Gudrun Elin Rohde

• Rohde, Gudrun; Haraldstad, Kristin; Helseth, Sølvi; Hagen, Milada; Skarstein, Siv & Mikkelsen, Hilde Timenes (2026). Health-related quality of life in parents of adolescents in 2019, 2021 and 2023. BMC Pediatrics. 26(1). doi: 10.1186/s12887-026-07115-8. Full text in Research Archive Show summary

  Abstract Purpose The objective of the present study is to describe levels of HRQOL in parents of adolescents over a span of four years (2019, 2021, and 2023) and identify which of selected sociodemographic variables associated with HRQOL over time. In addition, we compared all HRQOL domains with norm data from the general Norwegian population. Methods A longitudinal study involving 556 parents (at baseline) of adolescents from the general Norwegian population was conducted. Data were collected at baseline in 2019, in 2021 (when the COVID-19 pandemic was ongoing) and in 2023. HRQOL was assessed using RAND-36. Data were analysed using independent samples t-tests and linear mixed model for repeated measures. Results During the four-year (2019–2023), we observed a small but statistically significant decline in most HRQOL domains, and no domains increased again after the COVID-19 pandemic. Higher education, being in paid work and having a high household income were the most important associates of high HRQOL scores. We identified some statistical differences in HRQOL between the parents in the current study and Norwegian norms at all time points, although these were of limited clinical relevance. Conclusion Over four years, parents of adolescents experienced a small but persistent decline in HRQOL from before the COVID-19 pandemic through 2023, particularly in mental health domains, with no full return to pre-pandemic levels. Higher education, household income, and paid employment were consistently associated with better HRQOL.

• Bolliger, Céline; Collaço, Nicole; Raguindin, Peter Francis; Angoumis, Konstantinos; Cairns, Charlotte & Cartledge, Thomas J. [Show all 22 contributors for this article] (2026). Body image issues among adolescents and young adult cancer patients and survivors – A literature review from the STRONG AYA Project. EJC Paediatric Oncology. 8, p. 100547–100547. doi: 10.1016/j.ejcped.2026.100547. Full text in Research Archive
• Vetrano, Chiara; Balcerek, Magdalena; Rothmund-Grenier, Maria; Sodergren, Samantha; Rohde, Gudrun & Crazzolara, Roman [Show all 25 contributors for this article] (2026). Development of an age specific EORTC questionnaire to assess the health-related quality of life (HRQOL) of children with cancer aged 8–14 years – a mixed-methods content elicitation phase I & II EORTC QLG study. European Journal of Cancer. ISSN 0959-8049. 246, p. 117011–117011. doi: 10.1016/j.ejca.2026.117011. Full text in Research Archive
• Christensen, Mathilde Elsa; Rohde, Gudrun Elin & Frivold, Gro (2026). Adolescents’ experiences of being a relative of a critically ill patient in an intensive care unit: a qualitative study. BMC Health Services Research. 26(1). doi: 10.1186/s12913-026-14632-w. Full text in Research Archive Show summary

  Background: Existing literature suggests that adolescents often find critical illness overwhelming and receive inadequate support and information from both parents and healthcare professionals. Objective: To explore the experiences of adolescents as relatives in an intensive care unit (ICU). Design: This study utilised a qualitative approach with an exploratory and descriptive design with in-depth interviews. Participants: Sixteen adolescent relatives of critically ill patients were recruited from three different ICUs in Norway. Methods: The study utilised semi-structured in-depth qualitative interviews to gather data, which were subsequently analysed using reflexive thematic analysis. Results: We identified two main themes, and five subthemes. 1. Life turns upside down: exploring a threat to life’s security; (a) Alone in uncertainty during a relative’s critical illness, and (b) Seeking clarity and guidance to navigate the impressions from a transformed reality. 2. The significance of an inclusive environment; (a) Feeling invisible and excluded, (b) The need to be near and being prepared, and (c) Feeling involved by being informed. Conclusions: Adolescent relatives of critically ill patients experience significant uncertainty and distress. The ICU environment is perceived as intimidating and technical. They frequently feel overlooked and in need of a welcoming and supportive environment. By individually preparing adolescents before their initial visit, healthcare professionals can better meet their responsibilities, minimise trauma, and contribute to a sense of belonging for adolescent relatives in the ICU. Care can be improved by addressing their needs and providing tailored information. Health authorities should prioritise resource allocation to support family-centred care practices and ensure that these objectives are achieved. Clinical implications: Understanding adolescents’ experiences when a relative is admitted to an ICU is essential for all healthcare professionals who interact with critically ill patients and their families. This study suggests that adolescents need to feel a sense of belonging within the ICU and underscores the importance of systematic preparation and tailored communication in ICUs to adequately support and involve adolescents.

• Moi, Ellen Benestad; Skisland, Anne Valen -Sendstad; Haraldstad, Kristin; Johannessen, Berit; Rohde, Gudrun E. & Flateland, Sylvi Monika (2026). Communication and interaction between native-speaker Norwegian nurses and nurses with Norwegian as a second language in home-based care settings: a qualitative exploratory interpretive study. BMC Nursing. doi: 10.1186/s12912-026-04834-2. Full text in Research Archive Show summary

  Introduction: Language barriers between healthcare personnel can influence patient safety and result in inadequate follow-up and communication of the patient’s needs. Aim: The aim of this study was to explore how nurses with Norwegian as a first language (NFL) and nurses with Norwegian as a second language (NSL) experience communication and interaction with each other in home-based workplace settings. Method: The study involved in-depth interviews with 14 nurses: seven nurses with NFL and seven with NSL, and Braun and Clarke’s framework of reflexive thematic analysis were used. Results: Two main themes were identified: (1) the importance of mutual understanding in professional settings, with subthemes highlighting the need to double-check written communication and clarify oral exchanges; and (2) the value of social interactions among colleagues, emphasizing challenges posed by diverse cultural backgrounds and the necessity for clarification due to different native languages. Conclusion: This study underscores the communication challenges in interactions between nurses with NFL and NSL in home-based care. Misunderstandings related to limited language skills may pose a notable threat to patient safety. However, despite the language barriers, nurses with NFL and NSL show strong commitment to clarity and quality, and to working in a positive psychosocial work environment. These findings emphasize the need for organizational support, such as intercultural competence training and clear communication routines, to enhance collaboration and patient safety.

• Høiberg, Marie Tryland; Kvamme, Stine; Bentsen, Steffen Felle; Løkken, Karoline; Rohde, Gudrun E. & Torp, Hans [Show all 8 contributors for this article] (2026). Inter- and Intrarater Reliability of a Novel Ultrasound Doppler Device (earlybird) for Quantitative Assessment of Peripheral Arterial Flow. Medical devices : evidence and research.. 19. doi: 10.2147/mder.s579251. Full text in Research Archive Show summary

  Objective: Growing interest in quantitative Doppler assessment has underscored the need for reliable, operator-independent tools to evaluate peripheral arterial circulation. This study aimed to evaluate the reliability of a novel ultrasound Doppler device (earlybird) for measuring blood-flow velocity in lower-extremity arteries and to validate its consistency across raters. We further explored multiple hemodynamic parameters derived from the Doppler spectrogram to examine their reproducibility and potential clinical applicability. Methods: Thirty-five participants, including 25 with varying degrees of peripheral arterial disease (PAD) and 10 healthy individuals, were recruited. Four raters performed independent measurements of the peripheral blood-flow velocity in each participant (280 measurements). Six blood-flow parameters were extracted from the Doppler spectrograms: peak systolic velocity (PSV), time-averaged velocity (TAV), end-diastolic velocity (EDV), pulsatility index (PI), resistive index (RI), and acceleration time (AT). The intraclass correlation coefficient (ICC) was used to assess reliability, which was visualized in scatter plots and Bland–Altman plots with 95% limits of agreement. Results: Good correlation and agreement among the different raters were observed, with inter-rater reliability ranging from an ICC of 0.755– 0.835 (p < 0.001). Intra-rater reliability showed poor to excellent correlation, with ICCs ranging from 0.450 to 0.961, (p < 0.001). Bland–Altman plots revealed wide 95% limits of agreement for PSV, TAV, EDV, and PI, but narrower limits for RI (– 9.8% to 9.8%) and AT (– 17.3% to 17.1%). Conclusion: Earlybird was shown to be a reliable tool for assessing peripheral arteries across raters, with good inter- and intra-rater reliability. The angle-independent variables, RI and AT, showed narrow 95% limits of agreement, which justifies further exploration.

• Alkhaled, Tariq; Johannessen, Berit; Lie, Birgit; Alpers, Lise-Merete & Rohde, Gudrun (2026). Caring Across Cultures: A Cross-Sectional Study of Cultural Competence Among Nurses in Norway. Journal of Transcultural Nursing. ISSN 1043-6596. doi: 10.1177/10436596261423159. Full text in Research Archive Show summary

  Introduction: Cultural competence is essential for equitable, safe, and person-centered care in diverse populations. Nurses need to develop cultural understanding and abilities to provide culturally competent care. This study aimed to describe cultural competence among nurses working in somatic hospitals and investigate associations between demographic characteristics, knowledge and experience, self-efficacy, and cultural competence of nurses. Method: An online survey on nurses’ cultural competence was conducted with 201 nurses from three hospitals in Norway. Logistic regression analyses were used to examine associations between demographic characteristics, knowledge, and self-efficacy with cultural competence. Results: Significant associations were identified between age, gender, birthplace, international experience, and hospital affiliation with dimensions of cultural competence. Knowledge and self-efficacy of nurses were identified as critical factors positively associated with cultural competence. Discussion: Demographic factors influence nurses’ cultural competence and underline the importance of tailored training. Promoting knowledge and self-efficacy can improve culturally congruent care.

• Brédart, Anne; Kop, Jean-Luc; Shamieh, Omar; Fox, Louis; Alrjowb, Waleed & Conroy, Thierry [Show all 25 contributors for this article] (2026). Comorbidity, treatment toxicity and satisfaction with cancer care: an international cross-sectional study based on the EORTC PATSAT-C33 and OUT-PATSAT7. Supportive Care in Cancer. ISSN 0941-4355. 34(3). doi: 10.1007/s00520-026-10433-3. Full text in Research Archive
• Mikkelsen, Hilde Elisabeth Timenes; Barken, Tina Lien; Rohde, Gudrun E.; Helseth, Sølvi & Skarstein, Siv (2026). Parental health literacy in parents of adolescents aged 16–19: a qualitative study. BMC Public Health. 26(1). doi: 10.1186/s12889-026-26471-9. Full text in Research Archive Show summary

  Background: Parental health literacy is crucial for adolescent health outcomes — particularly during late adolescence, when teenagers take on greater health responsibility. There is a need for further research into parental health literacy and how parents access, understand, appraise, and apply health information, as this is vital for assisting their adolescents in making well-informed health decisions. This study aims to provide a deeper understanding of how parents of late-stage adolescents perceive their parental health literacy and to explore their experiences in transferring responsibility for health-related decisions to their adolescents. Methods: A study with a qualitative design was carried out using individual semi-structured interviews with 15 Norwegian parents of adolescents aged 16–19 years. Braun and Clarke’s reflexive thematic analysis was employed to analyze the data. Results: Three major themes were generated: (1) Transfer of health-related responsibility: from parental oversight to adolescent self-management, (2) parental health literacy and source credibility: navigating trustworthy information, and (3) enhancing parental health literacy to better support adolescents’ informed health decision‑making. Parents experience a shift as they balance their guidance with the adolescents’ growing autonomy. This involves selecting credible health information from digital platforms, healthcare professionals, and personal networks, underscoring the importance of parental health literacy in fostering adolescents’ informed decision-making and self-management of health. Conclusions: Parents of late‑stage adolescents are committed to supporting their children in managing health-related issues and to help develop adolescents’ capacity for autonomous health management, emphasizing the importance of parental health literacy. By facilitating the development of critical appraisal skills, and guiding informed decision-making, parents may contribute to strengthening adolescents’ competence and confidence in handling health-related matters more safely and independently. However, parents reported that losing access to their child’s health information after age 16 may hinder their ability to help. Empowering parents through strengthening their HL may improve individual and family health outcomes.

• Christensen, Mathilde Elsa; Frivold, Gro & Rohde, Gudrun E. (2026). Adolescent relatives' experiences and perceptions of everyday life when a family member is critically ill and admitted to an ICU and in the aftermath: A qualitative study. Intensive and Critical Care Nursing. ISSN 0964-3397. 93. doi: 10.1016/j.iccn.2026.104333. Full text in Research Archive Show summary

  Aims This study explored the experiences and perceptions of adolescents who were relatives of intensive care unit (ICU) patients, focusing on their everyday lives during and after the ICU stay. Design Inductive descriptive qualitative study. Methods Semi-structured, in-depth interviews were conducted and analysed using reflexive thematic analysis (RTA). Findings Sixteen adolescents as relatives of ICU patients in Norway were included. Three themes were identified: Navigating adolescence independently during critical illness, Relational bonds and A new everyday life. Eight sub-themes identified: Feeling isolated, need for support from knowledgeable adults, striving for normalcy, avoid being a burden, loyalty to their family, adaptation in roles and changed relations, experiencing mental and physical challenges and existential experiences. Conclusions Adolescent relatives of critically ill patients experienced substantial uncertainty and distress, with their attention persistently focused on the critically ill family member. Their lives were significantly altered, resulting in unpredictability. Some adolescents reported personal growth in the aftermath. The adolescents expressed a need for a structured support programme.

• Brédart, Anne; Kop, Jean-Luc; Shamieh, Omar; Fox, Louis; Alrjoub, Waleed & Conroy, Thierry [Show all 25 contributors for this article] (2026). Supportive cancer care and patient satisfaction: international prospective longitudinal study – secondary data analysis. BMJ Supportive & Palliative Care. ISSN 2045-435X. 16(5), p. 1097–1099. doi: 10.1136/spcare-2025-006024. Full text in Research Archive
• Andersen, John Roger; Flølo, Tone Nygaard; Gjeilo, Kari Hanne; Meyer, Käthe Birgitte; Norekvål, Tone Merete & Rohde, Gudrun E. (2026). Mapping quality of life in Norway: psychometric evaluation and network analysis of 15,148 responses from a public health study. PeerJ. 14, p. 1–18. doi: https:/peerj.com/articles/20529/. Full text in Research Archive Show summary

  Background The Norwegian Quality of Life Study (NQoLS) was established to inform public health policy by assessing self-reported health (SRH) and quality of life (QoL) outcomes across the general population, identifying factors that influence these outcomes, and highlighting vulnerable groups. In this study, we assessed the psychometric properties of the NQoLS measures and applied network analysis to explore the structural relationships among outcome variables. Methods The 2022 NQoLS is a cross-sectional study that included 15,148 adults from the general adult Norwegian population. No exclusion criteria were specified beyond the requirement that participants have a registered address, email, and/or phone number. The study assessed SRH and QoL through single- and multi-item measures across physical, psychological, and social domains. The psychometric evaluation included descriptive statistics, reliability testing, confirmatory factor analysis, and correlation analysis, followed by a network analysis to map how outcomes connect and cluster. Results Measures generally demonstrated acceptable reliability and validity. Model fit for multi-item scales was generally adequate following minor modifications. Network analysis identified a central cluster, including the Satisfaction with life scale, Hopkins Symptom Checklist-5, and Satisfaction with psychological health. These indicators were highly connected and structurally central. In contrast, physical health variables, including Satisfaction with physical health, Pain and discomfort, and General health, were more weakly connected and positioned at the network periphery. The sensitivity analysis, stratified by language preference, yielded results consistent with those of the entire sample. Conclusions The NQoLS provides a foundation for mapping SRH and QoL. Most measures worked well, though a few could be fine-tuned for a better fit and sensitivity. Based on our assessment and the structure revealed by the network analysis, physical health appears to be relatively underrepresented in the current survey, suggesting a potential area for future enhancement.

• Collaço, Nicole; Bolliger, Céline; Cairns, Charlotte; Sodergren, Samantha; Husson, Olga & Graaf, Winette T. A. van der [Show all 23 contributors for this article] (2025). Navigating Romantic Relationships and Sexual Intimacy: Challenges and Opportunities for Adolescents and Young Adults With Cancer ‐ A Literature Review of Qualitative Studies. Psycho-Oncology. ISSN 1057-9249. 34(9). doi: 10.1002/pon.70285. Full text in Research Archive Show summary

  Objective: This review explores the impact of cancer on adolescents' and young adults' (AYAs) romantic and sexual relationships, examining both challenges and opportunities. Methods: Qualitative studies on AYAs with cancer and/or their partners were searched based on a sub‐set of studies identified in a previous literature review within the EU Horizon STRONG‐AYA project, and supplemented with an additional search on romantic/sexual relationships. Articles were screened, reviewed in Rayyan and data extracted using a structured framework. Study quality was appraised, and findings were synthesised thematically. Results: Twenty studies were included. Findings revealed how cancer altered AYAs' sense of self, affecting the navigation of romantic relationships and sexual intimacy across four themes: (1) Romantic relationship development‐connection, isolation and changing priorities : Disrupted romantic trajectories and fears of being undesirable hindered relationship formation, though some re‐evaluated priorities, deepening emotional connections, (2) The disclosure dance: Finding the right time and way : AYAs struggled with when and how to disclose their diagnosis, with anxiety about burdening partners or altering dynamics. Open and honest communication fostered intimacy, (3) Body image, sexuality, intimacy, and fertility : Challenges in these areas impacted self‐worth, but also led to sexual empowerment and adapted intimacy, (4) Partnerships and social support during cancer : Unsupportive partners heightened isolation, while supportive partners reinforced self‐worth. Many AYAs experienced growth, resilience and a deeper understanding of themselves/their relationships. Conclusion: Results may inform age‐appropriate interventions to adequately address the unique challenges AYAs with cancer face in navigating romantic relationships and sexual intimacy.

• Brédart, Anne; Kop, Jean-Luc; Shamieh, Omar; Fox, Louis; Alrjoub, Waleed & Conroy, Thierry [Show all 26 contributors for this article] (2025). Phase IV international prospective validation of the EORTC patient satisfaction core questionnaire (EORTC PATSAT-C33) and outpatient module (EORTC OUT-PATSAT7). BMC Cancer. 25. doi: 10.1186/s12885-025-15119-3. Full text in Research Archive Show summary

  Background Advances in cancer care require ongoing monitoring of patient satisfaction using rigorous questionnaires. The EORTC Quality of Life Group has cross-culturally developed a patient satisfaction core questionnaire (PATSAT-C33) to be used in any hospital cancer care settings and an outpatient satisfaction module (OUT-PATSAT7) to address specific aspects of ambulatory care. This multi-center international prospective study aimed to validate the PATSAT-C33 and OUT-PATSAT7, including assessing its acceptability. Methods Patients (N = 690) affected by any cancer site or stage equally distributed by age and gender, were enrolled in in- and out-patient cancer settings from 20 institutions, 12 countries and 5 geographic/cultural areas. Among them, 675 completed the PATSAT-C33 alongside the EORTC QLQ-C30, Oberst’s perception of care quality 5-item, and ‘intention to recommend the hospital’ 1-item. Among the 532 outpatients, 526 also completed the OUT-PATSAT7. A subset completed a two-week retest (N = 120 & 96 for the PATSAT-C33 & OUT-PATSAT7, respectively) or one-year responsiveness-to-change assessment (RCA) (N = 166 & 155). Comprehensive psychometric testing was performed. Results Full item completion was high (85% & 88%), 83% of patients took ≤ 20 min to complete both questionnaires (40 items); 5% of patients required help with understanding questionnaire items. Confirmatory factor analyses evidenced satisfactory fit on the eleven PATSAT-C33 and two OUT-PATSAT7 multi-item scales (CFI/TLI > 0.90; RMSEA < 0.10 and = 0.108, respectively). Internal consistency was good to excellent (all ≥ 0.80); test–retest reliability was fair (0.48, 1 scale), good (0.60–0.74, 11 scales) to excellent (≥ 0.75, 7 scales). Convergent validity was supported by correlations of ≥ 0.40 with related Oberst’s scales and < 0.30 with unrelated QLQ-C30 scales. Known-groups differences was shown for comorbidity, toxicity, global health, care expectations and intention to recommend the hospital. Change over time was captured in groups defined based on change in global health, cancer care setting, and the receipt of supportive care over the past year. Conclusions This study supports the psychometric robustness of the EORTC PATSAT-C33 and OUT-PATSAT7 and their promising usefulness in monitoring cancer care within and across cancer care settings from different cultures and cancer patient populations.

• Sodergren, Samantha Claire; Husson, Olga; Janssen, Silvie; Rohde, Gudrun E.; Hossain, M. Jamal & Abaza, Haneen [Show all 41 contributors for this article] (2025). Development of a Health-Related Quality of Life Tool for Adolescents and Young Adults With Cancer. JAMA Network Open. 8(12). doi: 10.1001/jamanetworkopen.2025.49071. Full text in Research Archive Show summary

  Importance. A diagnosis of cancer during adolescence and young adulthood disrupts key developmental stages, affecting multiple domains of health-related quality of life (HRQOL). To provide a comprehensive assessment of the HRQOL issues of adolescents and young adults (AYAs) with cancer, a questionnaire dedicated to this age group is needed. Objective. To develop an HRQOL questionnaire, as a supplement to the European Organisation for Research and Treatment of Cancer (EORTC) QLQ-C30, that measures issues of relevance and importance to AYAs with cancer. Design, Setting, and Participants. This survey study was informed by a systematic review of AYA oncology literature published through December 31, 2015, and interviews with AYAs with cancer and health care professionals (HCPs) between February 2015 and February 2024. Participants were recruited from 19 cancer treatment centers in Europe, Asia, and various countries. Participants included HCPs providing care to AYAs with cancer and AYAs aged 14 to 39 years who were receiving treatment for cancer, had completed treatment within the past 12 months, or were receiving palliative care. Data analysis for the survey responses was performed from May to November 2024. Main Outcomes and Measures The primary study outcome was the development of an HRQOL questionnaire that assesses issues of importance and relevance to AYAs with cancer. A draft questionnaire was created and tested for relevance and importance. Exploratory factor analysis identified questionnaire subscales. Internal consistency of items within HRQOL domains was checked using Cronbach α. Results. A total of 253 AYAs (mean [SD] age, 25.5 [7.5] years; 129 males [51%]) completed the draft questionnaire, and 28 HCPs from 20 countries were also involved in this survey study. Pilot testing of the draft questionnaire resulted in a 30-item questionnaire covering 5 subscales (activity limitations and life disruptions, worry about cancer and the future, self-esteem, relationships, and positive changes) and 9 single questions. Reliability testing indicated good internal consistency, with Cronbach α ranging from 0.659 (relationships subscale) to 0.770 (positive changes subscale). Questions about distinguishing between important and nonimportant things and motivation to live life to the full were the most relevant to 89% (211 of 252) and 84% (224 of 252) of AYAs, respectively. Concerns about appearance changes and fertility were identified as priority questions by 24% (21 of 86) of AYAs. Conclusions and Relevance. In this survey study, a measurement tool was developed and tested that captures HRQOL issues of importance and relevance to AYAs from diverse cultures and with different cancer and treatment types. This HRQOL questionnaire could be a reliable and valid tool for both clinical trials and practice.

• Grasaas, Erik; Rohde, Gudrun E.; Mikkelsen, Hilde Elisabeth Timenes; Helseth, Sølvi; Hagen, Milada & Skarstein, Siv [Show all 7 contributors for this article] (2025). The relationship between parental self-efficacy, health-related quality of life, stress and educational level on adolescents’ self-efficacy: a cross-sectional study. Journal of Health, Population and Nutrition. ISSN 1606-0997. 44. doi: 10.1186/s41043-025-01163-z. Full text in Research Archive Show summary

  Background Self-efficacy is a well-known concept often referred to as the belief in the ability to perform in different situations. The concept of self-efficacy is particularly relevant during adolescence, as it serves as a self-regulatory mechanism through which adolescents can be motivated to change their behavior by significant others, such as parents. However, there is little research evidence on how parental factors are associated with adolescents’ self-efficacy. Hence, this current paper aimed to describe parental self-efficacy, health-related quality of life (HRQOL), stress, and educational level and explore associations between the participating parent’s self-efficacy, HRQOL, stress, and educational level on adolescents’ self-efficacy stratified by gender. Methods A cross-sectional study was performed among 508 Norwegian adolescent-parent dyads. Adolescents were 13–15 years old and completed an electronic survey during school hours with teacher and researcher present, whereas the participating parent completed the survey at home. The Survey comprised of a test battery of questionnaires, including sociodemographic data, self-efficacy for both adolescents and parents, and the parental factors: stress, HRQOL, and educational level. Separate multivariable regressions were conducted for the participating parent using STATA software. Results Descriptive analyses revealed a self-efficacy score of (mean/standard deviation (SD), 32.9 (4.0) vs. 34.1 (4.3)), HRQOL (mean/SD, PCS 51.1 (9.5) vs. 53.3 (7.0), MCS 51.9 (8.2) vs. 54.1 (7.2)) and stress (mean/SD, 0.28 (0.24) vs. 0.25 (0.15) among mothers and fathers respectively. Half of the mothers (506%) and 46.1% of the fathers reported ≥ 16 years of education. Multivariable regressions revealed all nonsignificant associations of all parental study variables on adolescents’ self-efficacy (all p > 0.05). Conclusions In this study, the parental factors examined were not associated with adolescents’ self-efficacy. These findings highlight the need for further observational and longitudinal studies with larger samples to better understand how parental factors influence adolescents’ self-efficacy.

• Rabben, Jannicke; Rohde, Gudrun Elin; Fossum, Mariann & Vivat, Bella (2025). Experiences and Perceptions of People With Advanced Cancer and Their Family Caregivers of Shared Decision-Making in Palliative Cancer Care. Journal of Advanced Nursing. ISSN 0309-2402. 81(8), p. 4976–4988. doi: 10.1111/jan.16705. Full text in Research Archive Show summary

  Aim: To explore the experiences and perceptions of people with advanced cancer and their family caregivers of shared decisionmaking, including how they and nurses are involved. Design: Exploratory interview study. Methods: Semistructured, individual interviews conducted in 2023 were analysed using reflexive thematic analysis. Results: Twenty-four participants (15 people with cancer and 9 caregivers) participated in this study. The analysis generated five themes; (1) Decisions are ultimately about living or dying, (2) Desires and expectations for involvement in decision-making, (3) Uncertainty about potential and capacity for shared decision-making, (4) Good quality information and communication are key for involvement and (5) Nurses' contributions are unclear. Conclusion: Overall, our participants were unsure about how decision-making about the complex and existential decisions in palliative cancer care was shared, or how it included them, or nurses. Implications for the Profession and Patient Care: People receiving care could benefit from more clarity on what shared decision-making is, how they can be involved and how nurses can facilitate and support shared decision-making. Impact: Part of the nursing role is to support and involve people with cancer and family caregivers in decisions about treatment and care. Our findings suggest that people receiving care may be unclear about the concept of shared decision-making, and so also about how nurses potentially or actually support decision-making. Our study further clarifies the challenges and possibilities for involving all stakeholders in shared decision-making. This additional insight may help in future development and implementation of shared decision-making. Reporting Method: COREQ. What Does This Paper Contribute to the Wider Global Clinical Community?Adds to knowledge and understanding of the complexity of shared decision-making in palliative cancer care and how nurses can contribute to this and advancing a person-centred approach.

• Rabben, Jannicke; Fossum, Mariann; Vivat, Bella & Rohde, Gudrun Elin (2025). Nurses' Perceptions of Their Involvement in Shared Decision-Making for Advanced Cancer Treatment and Palliative Care; a Qualitative Interview Study. Journal of Advanced Nursing. ISSN 0309-2402. 82(1), p. 719–731. doi: 10.1111/jan.16994. Full text in Research Archive Show summary

  Aim To explore nurses' perceptions of their involvement in shared decision-making for advanced cancer treatment and palliative care, and their contributions to patient involvement. Design Exploratory qualitative research. Methods In-depth interviews conducted in March–October 2023 with 15 nurses from two Norwegian hospitals were analysed using reflexive thematic analysis. Results Two broad themes were constructed: Theme (1) ‘Person-centredness; acquiring and sharing knowledge’; with subthemes; ‘Knowing and speaking for the person with cancer’, and ‘Providing informational, emotional and practical facilitation and support’, and Theme (2) Enacting the professional nurse role in complex situations'; with subthemes: ‘Palliative cancer care decision-making is particularly complex’, ‘Systems and cultures shape nurses’ roles and contributions', and ‘Balancing beneficence and patient autonomy’. Conclusion Participants perceived themselves as contributing to shared decision-making, while facing challenges and dilemmas in their professional roles. More supportive interprofessional working might improve how health professionals involve patients in shared decision-making. Implications for the Profession and Patient Care Increased development of nurses' contributions to shared decision-making about advanced cancer and palliative care could support their facilitation of patient involvement. Impact Although nurses can support people receiving palliative cancer treatment and care in shared decision-making, nursing's particular role and contribution has been unclear. Study findings suggest that nurses' important person-centred approach is challenging to maintain in treatment decision-making. These insights into nurses' involvement in shared decision-making could inform and contribute to the further development of interprofessional education, training, and leadership.

• Janssen, Silvie H. M.; Graaf, Winette T. A. van der; Hurley-Wallace, Anna; Vlooswijk, Carla; Padilla, Catarina S. & Cairns, Charlotte [Show all 26 contributors for this article] (2025). Core Patient-Centered Outcomes for Adolescents and Young Adults with Cancer: A Comprehensive Review of the Literature from the STRONG-AYA Project. Cancers. 17(3). doi: 10.3390/cancers17030454. Full text in Research Archive Show summary

  Background: In adolescents and young adults (AYAs) with cancer, the importance of patient-centered research outcomes is increasingly acknowledged and there is a need for consensus on the most relevant outcomes. This review provides a comprehensive overview of outcomes relevant to AYAs with cancer in order to develop an AYA-specific core outcome set (COS) as part of the European project STRONG-AYA. Methods: A literature search was conducted to identify relevant articles in five databases. Each article was reviewed by two independent researchers, using Rayyan (an online tool) to screen articles by their title/abstract and then by their full text. Subsequently, the data were extracted using a predefined, tailored extraction framework. Results: In total, 17,301 articles were screened, of which 1631 were included in the analyses. Registry studies (52.9%) were the most used study type. Well-represented continents were North America (50.3%) and Europe (27.8%). Of the five core areas, functioning (47.0%) and epidemiology (44.9%) were covered most often, followed by physiological/clinical (42.4%), resource use (6.1%), and adverse events (4.5%). The outcome domains that were represented the most include mortality/survival (43.1%), delivery of care (23.4%), outcomes relating to neoplasms (22.7%), and emotional functioning/well-being (19.2%). Conclusions: This literature review provides a foundation for the development of an AYA-specific COS for improving the relevance and efficiency of measuring outcomes, the pooling of (international) research data, and the value of care for current and future AYAs with cancer. Finalization and refinement of the COS should be a priority for future research.

• Rabben, Jannicke; Vivat, Bella; Fossum, Mariann & Rohde, Gudrun E. (2024). Shared decision-making in palliative cancer care: A systematic review and metasynthesis. Palliative Medicine. ISSN 0269-2163. 38(4), p. 406–422. doi: 10.1177/02692163241238384. Full text in Research Archive
• Robstad, Anja Nastasja; Paulsen, Anita; Vistad, Ingvild; Hott, Alexandra Christine; Berg, Kari Hansen & Øgård-Repål, Anita [Show all 9 contributors for this article] (2024). Experiences of pain communication in endometriosis: A meta-synthesis. Acta Obstetricia et Gynecologica Scandinavica. ISSN 0001-6349. p. 1–16. doi: 10.1111/aogs.14995. Full text in Research Archive Show summary

  Introduction: Endometriosis is the leading cause of chronic pelvic pain among women. The pain associated with endometriosis significantly impacts various aspects of patients' quality of life. A notable void in the literature is the absence of a systematic review exploring pain communication between patients with endometriosis and healthcare professionals. Hence, the aim of this qualitative systematic review was to synthesize findings on how patients with endometriosis experience communicating with healthcare professionals about pain and how healthcare professionals experience these interactions. Material and Methods: A systematic literature search was conducted related to patients with endometriosis and pain communication in CINAHL PLUS with full text and MEDLINE (via EBSCO host) on May 12, 2023, and updated January 26, 2024. Searches were supplemented by backward searching reference lists and forward searching citations of included reports in Scopus and Google Scholar. The review was guided by the four-step meta-synthesis methodology by Sandelowski and Barosso. Critical appraisal of included studies was conducted using Critical Appraisal Skill Program (CASP). Findings were analyzed thematically, using the approach described by Thomas and Harden. The meta-synthesis was based on a registered protocol in PROSPERO (CRD 42023425430), and the study is reported adhering to the PRISMA 2020 checklist. Results: Overall, 37 reports published from 2003 until 2023 contributed to the review, including 4842 participants. Through thematic analysis, we developed the following themes: “Navigating the double burden,” “Lack of mutual understanding,” and “The complexities of conveying pain.” Conclusions: The communication of pain between patients with endometriosis and healthcare professionals is complex, encompassing patterns of disbelief, normalization, and psychological attribution. Engaging in discussions about pain presents diverse challenges stemming from insufficient communication skills and assessment tools. Further research is warranted to comprehensively explore the perspectives of both patients and healthcare professionals, aiming to devise strategies that enhance communication and patient care.

• Reiråskag, Marie Aaslie; Brokke, Silje Støle; Rohde, Gudrun Elin; Bertelsen, Thomas Bjerregaard; Landrø, Nils Inge & Haaland, Vegard Øksendal (2024). Decision-making deficits in suicidal acute psychiatric patients: Insights from the Cambridge Gambling Task. Cogent Psychology. 11(1). doi: 10.1080/23311908.2024.2433851. Full text in Research Archive
• Schwartz, Carolyn E.; Huang, I-Chan; Rohde, Gudrun E. & Skolasky, Richard L. (2024). Uncovering the story within the story: a scoping review of response shift in qualitative research. Quality of Life Research. ISSN 0962-9343. p. 1–20. doi: 10.1007/s11136-024-03803-z. Full text in Research Archive
• Meyer, Käthe Birgitte; Rohde, Gudrun E. & Frivold, Gro (2024). Relatives’ and Intensive Care Unit Personnel’s Perspectives of Care in Organ Donation: Protocol for a Multiple Methods Study. JMIR Research Protocols. 13. doi: 10.2196/55643. Full text in Research Archive
• Rohde, Gudrun E.; Lehmann, Jens; Pilz, Micha J.; Rojas-Concha, Leslye; Holzner, Bernhard & King, Madeleine T. [Show all 8 contributors for this article] (2024). Norwegian and Swedish value sets for the EORTC QLU-C10D utility instrument. Quality of Life Research. ISSN 0962-9343. p. 1–15. doi: 10.1007/s11136-024-03824-8. Full text in Research Archive Show summary

  Purpose: This study aimed to develop utility weights for the European Organization for Research and Treatment of Cancer (EORTC) QLU-C10D, a cancer-specific utility instrument, tailored to the Norwegian and Swedish populations. The utility weights are intended for use in the specific welfare contexts of Norway and Sweden to support more precise healthcare decision-making in cancer treatment and care. Methods: This cross-sectional study included 1019 Norwegian and 1048 Swedish participants representative in age and gender of the two general populations. Participants completed a discrete choice experiment involving 960 choice sets, each consisting of two EORTC QLU-C10D health states described by the instrument’s domains and the duration of each state. Utility weights were calculated using generalized estimation equation models, and non-monotonic levels were merged to ensure consistent valuation. Results: In the Norwegian participants, the largest utility decrements were seen for the domain of physical functioning (decrement of − 0.263 for highest level “very much”), followed by pain (decrement − 0.205 for level “very much”) and role functioning (− 0.139). Among the cancer-specific domains, nausea had the largest utility decrement (− 0.124). In the Swedish participants, the largest utility decrements were also observed for physical functioning (− 0.207 for the response “very much”), followed by pain (− 0.139), role functioning (− 0.133), and nausea (− 0.119). Emotional functioning also exhibited a sizable utility decrement (− 0.115). Conclusion: This study provides the first set of utility weights for the EORTC QLU-C10D specific to Norway and Sweden, reflecting the unique health preferences of these populations. The generated utility decrements can inform cost-utility analyses and optimize resource allocation in cancer care within the Norwegian and Swedish healthcare systems.

• Skarstein, Siv; Helseth, Sølvi; Hagen, Milada; Haraldstad, Kristin; Rohde, Gudrun Elin & Mikkelsen, Hilde E. Timenes [Show all 7 contributors for this article] (2024). Use of Over-The-Counter Analgesics is Associated with Pain, Stress, and Quality of Life in Norwegian Adolescents: A Cross-Sectional Study. Children. 11(10), p. 1–11. doi: 10.3390/children11101247. Full text in Research Archive Show summary

  Introduction: Approximately 20% of Norwegian adolescents are frequently using Over-the-Counter Analgesics (OTCAs). The WHO emphasizes the need for research to identify the key determinants of health problems in adolescence. Thus, our aim was to describe and explore pain, stress, and Health-Related Quality of Life (HRQOL) in Norwegian adolescents and investigate possible associations upon high/low usage of OTCAs. Methods: This cross-sectional study included 315 adolescents (92 boys, 223 girls) with an average age of 14.1 years (13–15 years). All participants reported using OTCAs. Weekly usage was categorized as high and less than weekly as low. Using a validated questionnaire, we explored the following variables: pain, as measured using the Brief Pain Inventory, stress (Perceived Stress Questionnaire), and HRQOL (KIDSSCREEN-27). Binary logistic regression models were conducted using IBM SPSS Statistics (version 27). Results: Our descriptive findings reveal that high users of OTCAs reported higher pain intensity of 3.4 (SD = 1.9) and perceived stress of 0.38 (SD = 0.18) compared to low users, who reported 2.5 (SD = 1.9) and 0.32 (SD = 0.16), respectively. High OTCA users reported lower average scores than low users across all HRQOL subscales. Binary logistic regression revealed 30% higher odds for higher levels of pain intensity and 14 times higher odds of perceived stress associated with being a high user of OTCAs compared to a low user. Conclusions: Our study shows significantly higher odds for experiencing pain and stress among adolescents using OTCAs daily-to-weekly, compared to those seldom using such medicines. Health professionals should be aware of young people who have a high consumption of OTCAs and investigate whether the use is related to pain or stress. This might be important in designing a personalized and appropriate intervention. Parents and caregivers have an important responsibility in supporting adolescents’ appropriate pain management. Longitudinal studies are needed to better explore predictive factors of OTCA use in adolescents, particularly in relation to psychological variables such as stress and quality of life.

• Rojas-Concha, Leslye; Arrarrás, Juan Ignacio; Conroy, Thierry; Chalk, Tara; Guberti, Monica & Holzner, Bernhard [Show all 13 contributors for this article] (2024). Acceptability and usefulness of the EORTC ‘Write In three Symptoms/Problems’ (WISP): a brief open-ended instrument for symptom assessment in cancer patients. Health and Quality of Life Outcomes. 22(1). doi: 10.1186/s12955-024-02244-z. Full text in Research Archive Show summary

  Background: The use of open-ended questions supplementing static questionnaires with closed questions may facilitate the recognition of symptoms and toxicities. The open-ended ‘Write In three Symptoms/Problems (WISP)’ instrument permits patients to report additional symptoms/problems not covered by selected EORTC questionnaires. We evaluated the acceptability and usefulness of WISP with cancer patients receiving active and palliative care/treatment in Austria, Chile, France, Jordan, the Netherlands, Norway, Spain and the United Kingdom. Methods: We conducted a literature search on validated instruments for cancer patients including open-ended questions and analyzing their responses. WISP was translated into eight languages and pilot tested. WISP translations were pre-tested together with EORTC QLQ-C30, QLQ-C15-PAL and relevant modules, followed by patient interviews to evaluate their understanding about WISP. Proportions were used to summarize patient responses obtained from interviews and WISP. Results: From the seven instruments identified in the literature, only the free text collected from the PRO-CTAE has been analyzed previously. In our study, 161 cancer patients participated in the pre-testing and interviews (50% in active treatment). Qualitative interviews showed high acceptability of WISP. Among the 295 symptoms/problems reported using WISP, skin problems, sore mouth and bleeding were more prevalent in patients in active treatment, whereas numbness/tingling, dry mouth and existential problems were more prevalent in patients in palliative care/treatment. Conclusions: The EORTC WISP instrument was found to be acceptable and useful for symptom assessment in cancer patients. WISP improves the identification of symptoms/problems not assessed by cancer-generic questionnaires and therefore, we recommend its use alongside the EORTC questionnaires.

• Rohde, Gudrun Elin; Berg, Kari Hansen; Pripp, Are Hugo & Haugeberg, Glenn (2024). Perceived effects of health status on sexual activity in patients with axial spondyloarthritis: a 5-year follow-up study. Rheumatology International. ISSN 0172-8172. 45(1), p. 1–12. doi: 10.1007/s00296-024-05758-3. Full text in Research Archive Show summary

  Axial spondyloarthritis (ax-SpA) causes pain, fatigue, stiffness, loss of physical function, and poor health status, which can influence sexual activity and enjoyment. To explore whether patients with ax-SpA perceive that their health status effects their sexual activity and to identify predictors of these perceived effects on sexual activity after a 5-year follow-up. Data about demographics, disease, medication, health-related quality of life (HRQOL), and sexual quality of life (SQOL) were collected at the baseline and 5-year follow-up. The perceived effect of health status on sexual activity was measured by question 15 in the 15D questionnaire. Data were analysed using the McNemar and independent paired t tests and logistic regression. In the 244 patients with ax-SpA (30% women, 70% men; mean age, 46 years), measures reflecting disease activity decreased and comorbidities increased, and more patients were treated with biological drugs at 5 years. Compared with patients whose health status had little/no effect on sexual activity (n = 200), those who perceived that their health status had a large effect on sexual activity (n = 44) were older, exercised less, fewer were employed, had more comorbidities, higher disease activity, and lower HRQOL and SQOL. The baseline predictors of a negative effect of health status on sexual activity were old age and low SQOL. Patients reporting that their health status had a large effect on sexual activity at 5 years were older, had more disease activity, and lower HRQOL and SQOL.

• Rohde, Gudrun E.; Helseth, Sølvi; Småstuen, Milada Cvancarova; Mikkelsen, Hilde Elisabeth Timenes; Skarstein, Siv & Haraldstad, Kristin (2024). The relationship between gender, psychosocial factors, pain, health literacy and health-related quality of life in parents of Norwegian adolescents one year into the COVID-19 pandemic. BMC Public Health. 24(1). doi: 10.1186/s12889-024-18525-7. Full text in Research Archive
• Schwartz, Carolyn E.; Borowiec, Katrina; Waldman, Ariel H.; Sutherland, Tai; Contreras, Briana & Abatan, Elizabeth [Show all 10 contributors for this article] (2024). Emerging priorities and concerns in the wake of the COVID-19 pandemic: qualitative and quantitative findings from a United States national survey. Frontiers in Public Health. 12. doi: 10.3389/fpubh.2024.1365657. Full text in Research Archive
• Vivat, Bella; Speck, Peter; Uddin, Inayah; Rohde, Gudrun Elin; White, Nicola & Candy, Bridget [Show all 9 contributors for this article] (2023). What kinds of spiritual and/or religious interventions for the wellbeing of people living with terminal illnesses did RCTs investigate in 2011–22? Findings from a Cochrane …. BMJ Supportive & Palliative Care. ISSN 2045-435X. 13(1). doi: 10.1136/spcare-2023-MCRC.47. Full text in Research Archive Show summary

  Introduction People with terminal illnesses may have spiritual and/or religious concerns and often value professional assistance with addressing these. It is again being increasingly recognised that, as Cicely Saunders originally argued, attending to the spiritual and/or religious needs of people approaching the end-of-life benefits their health and wellbeing overall. Aims To explore the detail of spiritual and/or religious interventions for the wellbeing of adults with terminal illnesses in randomised controlled trials (RCTs) included in a 2011–22 Cochrane review. Methods We systematically searched six databases (AMED, CENTRAL, CINAHL, EMBASE, MEDLINE, and PsycINFO) for RCTs of spiritual and/or religious interventions for the wellbeing of adults with terminal illnesses between 2011 and 2022. Our primary outcomes were spiritual wellbeing, psychological wellbeing, quality of life, coping, death distress, and quality of death/dying. Results We identified 2569 citations, retrieved 98 full-texts, and included 40 studies, a much larger number and proportion than the 2012 review (40/2569 vs 5/3868). Studies were conducted globally: in Africa, the Americas, Asia, Australasia, and Europe. Interventions varied. Most involved psychotherapy (14) or life reflection (13). Five were explicitly spiritual or religious, e.g., Islamic prayer, or Buddhist chanting. Five comprised explicit spiritual/religious elements within a palliative care intervention. The remaining three investigated meditation or mindfulness. Studies also varied in their comparators, outcomes assessed, and outcome measures used. This variability between studies restricted and limited inter-study comparisons. Conclusions Increasing numbers of RCTs in this field are being conducted internationally. However, they vary widely in the interventions they investigate, the outcomes they address, and the measures they use. Impact This important, under-researched field is growing, with increasing numbers of RCTs investigating spiritual and/or religious interventions for wellbeing. However, studies are highly diverse, and, while variation is to be expected in a developing field, too much prevents comparisons of study findings. More consistency of design would enable more inter-study comparability.

• Skogen, Vegard; Langseth, Ranveig; Rohde, Gudrun Elin; Rysstad, Ole; Sørlie, Tore & Lie, Birgit (2023). Prevalence of mental distress and factors associated with symptoms of major depression among people living with HIV in Norway. AIDS Care. ISSN 0954-0121. doi: 10.1080/09540121.2023.2275043. Full text in Research Archive Show summary

  For people living with HIV (PLHIV) who can access lifesaving treatment, HIV has become a chronic lifelong condition; however, PLHIV have more mental and somatic comorbidities than their HIV-negative peers. In this cross-sectional study, we assessed the prevalence of mental distress and identified factors associated with major depression among 244 well-treated PLHIV residing in Norway. Participants completed validated questionnaires covering mental and somatic health. The prevalence of mental distress, defined as a score on the Hopkins Symptom Check List-25 >1.75, was 32%, and that of symptoms of major depression, defined as a score on the Beck Depression Inventory-II ≥20, was 15%. The factors associated with major depressive symptoms identified using logistic regression were risk of drug abuse (adjusted odds ratio (AOR) 15.1, 95% confidence interval (CI) 3.28, 69.3), fatigue (AOR 12.5, 95% CI 3.90, 40.0), trouble sleeping (AOR 7.90, 95% CI 2.85, 21.9), African origin (AOR 3.90, 95% CI 1.28, 11.9), low education (AOR 3.31, 95% CI 1.18, 9.30), and non-disclosure (AOR 3.22, 95% CI 1.04, 10.0). Our findings indicate that the prevalence rates of mental distress and major depressive symptoms are higher among well-treated PLHIV residing in Norway than in the general population. These conditions are under-diagnosed and under-treated, and increased awareness is needed.

• Andresen, Gunvor S.; Johannessen, Berit A. T.; Rohde, Gudrun E.; Haraldstad, Kristin & Skisland, Anne Valen -Sendstad (2023). Læreres erfaringer med veiledning av sykepleierstudenter i kliniske studier gjennom covid-19 pandemien. Sykepleien Forskning. ISSN 1890-2936. 18. doi: 10.4220/Sykepleienf.2023.92297. Full text in Research Archive
• Grasaas, Erik; Mikkelsen, Hilde Elisabeth Timenes; Haraldstad, Kristin; Helseth, Sølvi; Hagen, Milada & Skarstein, Siv [Show all 7 contributors for this article] (2023). Pain in Adolescence: Maternal and Paternal Factors Affecting Adolescents’ Pain in Norway—A Cross-Sectional Study. Children. 10(12). doi: 10.3390/children10121915. Full text in Research Archive Show summary

  Background: Pain in adolescence is considered a worldwide concern. Adolescents’ pain affects family functioning. However, bidirectional associations should be considered as parental determinates such as pain, stress, and sociodemographic factors are also shown to influence pain in adolescence. Objectives: This study explored the associations between maternal and paternal sociodemographic factors, pain, and stress and adolescents’ pain, and stress on adolescents’ pain. Methods: In total, 508 school-based Norwegian adolescents with a corresponding parent were included. All adolescents completed an electronic survey during school hours, and their respective parents responded electronically. The survey included sociodemographic data, the Perceived Stress Questionnaire, and the Brief Pain Inventory. Results: Herein, 385 adolescents reported an average pain of 2.1 (SD, 1.9), and 308 of the participating parents reported an average pain of 1.6 (SD, 1.8). Regressions stratified by parental gender revealed nonsignificant associations in fathers’ study variables predicting adolescents’ pain. However, having the highest maternal educational level (p ≤ 0.01) and working part-time (p ≤ 0.01) were associated with lower pain in adolescents. Conclusions: The findings of this study demonstrated that sociodemographic factors such as high educational status in mothers and mothers working part-time were associated with lower pain in Norwegian adolescents. These findings highlight the importance of a holistic approach to pain management in adolescence.

• Spooner, Caitlin; Vivat, Bella; White, Nicola; Bruun, Andrea; Rohde, Gudrun E. & Kwek, Pei Xing [Show all 7 contributors for this article] (2023). What outcomes do studies use to measure the impact of prognostication on people with advanced cancer? Findings from a systematic review of quantitative and qualitative studies. Palliative Medicine. ISSN 0269-2163. 37(9), p. 1345–1364. doi: 10.1177/02692163231191148. Full text in Research Archive Show summary

  Background: Studies evaluating the impact of prognostication in advanced cancer patients vary in the outcomes they measure, and there is a lack of consensus about which outcomes are most important. Aim: To identify outcomes previously reported in prognostic research with people with advanced cancer, as a first step towards constructing a core outcome set for prognostic impact studies. Design: A systematic review was conducted and analysed in two subsets: one qualitative and one quantitative. (PROSPERO ID: CRD42022320117; 29/03/2022). Data sources: Six databases were searched from inception to September 2022. We extracted data describing (1) outcomes used to measure the impact of prognostication and (2) patients’ and informal caregivers’ experiences and perceptions of prognostication in advanced cancer. We classified findings using the Core Outcome Measures in Effectiveness Trials (COMET) initiative taxonomy, along with a narrative description. We appraised retrieved studies for quality, but quality was not a basis for exclusion. Results: We identified 42 eligible studies: 32 quantitative, 6 qualitative, 4 mixed methods. We extracted 70 outcomes of prognostication in advanced cancer and organised them into 12 domains: (1) survival; (2) psychiatric outcomes; (3) general outcomes; (4) spiritual/religious/existential functioning/wellbeing, (5) emotional functioning/wellbeing; (6) cognitive functioning; (7) social functioning; (8) global quality of life; (9) delivery of care; (10) perceived health status; (11) personal circumstances; and (12) hospital/hospice use. Conclusion: Outcome reporting and measurement varied markedly across the studies. A standardised approach to outcome reporting in studies of prognosis is necessary to enhance data synthesis, improve clinical practice and better align with stakeholders’ priorities.

• Grasaas, Erik; Rohde, Gudrun E.; Haraldstad, Kristin; Helseth, Sølvi; Småstuen, Milada Cvancarova & Skarstein, Siv [Show all 7 contributors for this article] (2023). Sleep duration in schooldays is associated with health-related quality of life in norwegian adolescents: a cross-sectional study. BMC Pediatrics. 23(1). doi: 10.1186/s12887-023-04306-5. Full text in Research Archive Show summary

  Background Insufficient sleep is commonly reported in adolescence and is negatively associated with a wide range of health outcomes. A way to grasp the complicated challenge of how sleep impact different aspects of the adolescents´ everyday life is by examining the relationship between sleep duration in schooldays and weekends on different health-related quality of life (HRQOL) subscales. Furthermore, to expand the understanding of possible underlying mechanisms between sleep and HRQOL, testing for self-efficacy as a possible mediator is of importance. Methods A cross-sectional study was performed among 696 adolescents aged 13–15 years from a schoolbased setting. All participants completed an electronic survey in their respective classrooms. The survey included demographic data, the School Sleep Habits Survey, the KIDSCREEN-27 questionnaire measuring HRQOL, and the General Perceived Self-Efficacy Scale. Statistical analyses were conducted using SPSS Statistics software including PROCESS macro by Andrew Hayes. Results Our findings revealed overall similar sleep patterns in boys and girls including longer sleep duration in the study sample during weekends (10:09 h) than in schooldays (08:36 h). Regression analyses revealed that sleep duration in schooldays was positively and statistically associated with HRQOL subscales psychological well-being (95% CI [0.44 to 1.33]), autonomy and parents (95% CI [0.12 to 1.06]), school environment (95% CI [0.47 to 1.40]), and self-efficacy (95% CI [0.01 to 0.47]). Sleep duration in weekends revealed no associations with the HRQOL subscales, except for the HRQOL subscale psychological well-being (95% CI [0.09 to 0.85]). Mediation analyses revealed that sleep duration in schooldays explained most of the associations (64 −75%) in 4 out 5 HRQOL subscales, except in the association with the HRQOL subscale physical well-being revealing an indirect effect of 71.9%. Conclusions This cross-sectional study described sleep among Norwegian adolescents and demonstrated that sleep durations in weekends and schooldays impact HRQOL and self-efficacy, revealing overall better outcome in HRQOL and self-efficacy with sufficient sleep during schooldays. These findings support the regularity of sleep and highlight the importance of sufficient sleep during schooldays, especially in a school-based sample of adolescents.

• Skogen, Vegard; Rohde, Gudrun E.; Langseth, Ranveig; Rysstad, Ole; Sørlie, Tore & Lie, Birgit (2023). Factors associated with health-related quality of life in people living with HIV in Norway. Health and Quality of Life Outcomes. 21(1). doi: 10.1186/s12955-023-02098-x. Full text in Research Archive Show summary

  Background - Despite the advances in the treatment of HIV, people living with HIV (PLHIV) still experience impairment of health-related quality of life (HRQOL). The aim of the study was to explore factors associated with HRQOL in a well-treated Norwegian HIV population.<p> <p>Methods - Two hundred and forty-five patients were recruited from two outpatient clinics to participate in this cross-sectional study of addiction, mental distress, post-traumatic stress disorder, fatigue, somatic health, and HRQOL. The latter was measured using the 36-Item Short Form Health Survey (SF-36). Stepwise multiple linear regression analysis was used to examine the adjusted associations between demographic and disease-related variables and HRQOL.<p> <p>Results - The study population was virologically and immunologically stable. Their mean age was 43.8 (SD = 11.7) years, 131 (54%) were men, and 33% were native Norwegians. Compared with the general population (published in previous studies), patients reported worse SF-36 scores for five of eight domains: mental health, general health, social function, physical role limitation, and emotional role limitation (all p < 0.001). Compared with men, women reported better SF-36 scores within the domains vitality (63.1 (23.6) vs. 55.9 (26.7), p = 0.026) and general health (73.4 (23.2) vs. 64.4 (30.1), p = 0.009). In the multivariate analyses, higher SF-36- physical component score values were independently associated with young age (p = 0.020), being employed, student, or pensioner (p = 0.009), low comorbidity score (p = 0.015), low anxiety and depression score (p = 0.015), being at risk of drug abuse (p = 0.037), and not being fatigued (p < 0.001). Higher SF-36-mental component score values were independently associated with older age (p = 0.018), being from a country outside Europe or from Norway (p = 0.029), shorter time since diagnosis, low anxiety and depression score (p < 0.001), answering ‘no’ regarding alcohol abuse (p = 0.013), and not being fatigued (p < 0.001).<p> <p>Conclusions - HRQOL was poorer in PLHIV than in the general population in Norway. It is important to focus on somatic and mental comorbidities when delivering health-care services in the ageing population of PLHIV to improve HRQOL even among a well-treated group of PLHIV as found in Norway.

• Rohde, Gudrun E.; Johannessen, Berit; Maaseide, Markus; Flateland, Sylvi Monika; Skisland, Anne Valen -Sendstad & Moi, Ellen Benestad [Show all 7 contributors for this article] (2023). Being a nursing student during the coronavirus pandemic: a mixed methods study. BMC Nursing. 22(1). doi: 10.1186/s12912-023-01218-8. Full text in Research Archive Show summary

  Background The COVID-19 pandemic led to major changes in people’s lives via protective strategies aimed at limiting the transmission of COVID-19, including social distancing, lockdowns, cancelled or limited leisure activities and tutorials and supervision for students taking place digital. All of these changes may have influenced students’ health and quality of life. Aim To describe and explore fear of COVID-19 and psychological distress, as well as general health and quality of life, among baccalaureate nursing students at 1 year into the COVID-19 pandemic.

• Johannessen, Berit; Flateland, Sylvi Monika; Haraldstad, Kristin; Skisland, Anne Valen -Sendstad & Rohde, Gudrun E. (2022). Being an ethnic minority nursing student- A meta synthesis. Journal of Professional Nursing. ISSN 8755-7223. 40(May-June), p. 111–121. doi: 10.1016/j.profnurs.2022.03.011. Full text in Research Archive Show summary

  Background Our society is characterized by a general globalization and has become more culturally diverse. This diversity is mirrored in nursing education. Purpose The purpose of the meta-synthesis is to identify and synthesize data from primary, qualitative studies of ethnic minority nursing students' experiences in a nursing program. Method Electronic databases, Medline, Embase, and CINAHL, were searched for studies published in English or Nordic languages from 1980 to February 2020. Results The search generated 1070 unique citations, of which 19 articles met the inclusion criteria. The included studies had a total sample size of 255 students, age range 19–50 years. The participants originated from Asia (65), Africa (53), South America (45), and Eastern Europe (17). Seventy-five students' origins were unknown. The meta-synthesis revealed that participants' experiences were characterized by four main themes: to understand and be understood; the importance of supportive relations; motivated but emotionally distressed; and conflicting cultural expectations. Conclusion Ethnic minority nursing students experienced challenges related to language, socialization, cultural awareness, and relations with educators and other students. To meet the students' needs and increase their graduation rates, educational institutions and supervisors should work to promote and facilitate their integration and provide a good learning environment.

• Alkhaled, Tariq; Rohde, Gudrun E.; Lie, Birgit & Johannessen, Berit (2022). Beyond challenges and enrichment: a qualitative account of cross-cultural experiences of nursing patients with an ethnic minority background in Norway. BMC Nursing. 21. doi: 10.1186/s12912-022-01102-x. Full text in Research Archive
• Moi, Ellen Benestad; Skisland, Anne Valen -Sendstad; Johannessen, Berit; Haraldstad, Kristin; Rohde, Gudrun E. & Flateland, Sylvi Monika (2022). Working as a nurse in community health services during Covid-19: a qualitative study. BMC Nursing. 21(1). doi: 10.1186/s12912-022-01141-4. Full text in Research Archive
• Alkhaled, Tariq; Rohde, Gudrun E.; Lie, Birgit & Johannessen, Berit (2022). Navigating the care between two distinct cultures: a qualitative study of the experiences of Arabic-speaking immigrants in Norwegian hospitals. BMC Health Services Research. 22, p. 1–11. doi: 10.1186/s12913-022-07833-6. Full text in Research Archive Show summary

  Background During the past decades, there has been an increase in the number of immigrants to European and Scandinavian countries. This has challenged the health-care systems, which cater to the needs of patients despite their cultural and linguistic barriers, in these countries. Most studies on this topic have focused on the perspectives of health-care providers in delivering their service. The purpose of this qualitative study was to explore how hospitalized Arabic-speaking patients experienced their interaction with the Norwegian health-care system. Methods In-depth interviews with 20 participants and researcher’s participant observation were conducted to explore the idiosyncratic details and ascribed meanings that foreign-born patients attach to their everyday experience of the Norwegian health-care system. Thematic analysis was performed on the transcribed and translated versions of the in-depth interviews. Results The findings of this study indicated three interrelated core themes. Firstly, there exist challenges in understanding and being understood because of linguistic and cultural differences of newly migrated patients. Secondly, some patients missed the holistic and direct care available in their home countries. Finally, patients were satisfied with the Norwegian health-care system because of its compassion, care, and respect toward them as well as advanced health-care equipment. Conclusion Arabic-speaking patients in Norwegian hospitals experienced long waiting times and linguistic problems. Hence, a better and specialized interpreter service may resolve problems emanating from communication within the system and the subsequent delays in treatment. Compassionate care and the feeling of respect and love is the core strength of the Norwegian system as perceived by the patients.

• Rohde, Gudrun E.; Johannessen, Berit; Maaseide, Markus; Flateland, Sylvi Monika; Skisland, Anne Valen -Sendstad & Moi, Ellen Benestad [Show all 7 contributors for this article] (2022). Baccalaureate nursing students’ experiences of how the COVID-19 pandemic influenced learning – a mixed method study. BMC Nursing. 21(1). doi: 10.1186/s12912-022-00955-6. Full text in Research Archive Show summary

  Background The COVID-19 pandemic mandated the reconstruction of educational programs globally. For nursing students in need of practical learning and training as a part of their curriculum, the pandemic also caused restrictions and alterations in practical placements and limited access to simulation training at campuses. The aim of this study is therefore, to describe and explore how the COVID- 19 pandemic influenced baccalaureate nursing students’ experiences of learning and their social life as a student. Method We used a mixed method study design including quantitative data from one of the universities (University of Agder) from a national Norwegian survey of baccalaureate nursing students and qualitative data from focus-group interviews from the same university. The quantitative survey included 396 baccalaureate nursing students (response rate, 46%). We arranged five focus groups with a total of 23 students (15 females and 8 males). The students took part in one of the focus-group interviews. The quantitative data were analyzed using chi-square test for categorical data and ANOVA tests for continuous data, while the qualitative data were analyzed using Systematic Text Condensation and an editing analysis style. Results Most students (70%) were concerned about the quality of the education program. In clinical placement, 83% of students had cared for patients with confirmed COVID-19 or unclear COVID-19 status. The qualitative data revealed three main themes: missing the social dimension of learning; worries and challenges in clinical placement; and experiencing normal instructive days in clinical placement. The general picture emerging from our analysis is the importance of social interactions for learning. Conclusion As the COVID-19 pandemic continues, our findings of students’ worries about the quality of the education program and not reaching learning outcomes must be taken into consideration. Social interaction is considered crucial and fundamental for student learning. A follow-up study following baccalaureate completion is necessary to explore the consequences over time of disrupted education.

• Flølo, Tone Nygaard; Gjeilo, Kari Hanne; Andersen, John Roger; Haraldstad, Kristin; Hjelmeland, Inger Helen Hardeland & Iversen, Marjolein M. [Show all 13 contributors for this article] (2022). The impact of educational concerns and satisfaction on baccalaureate nursing students’ distress and quality of life during the Covid-19 pandemic; a cross-sectional study. BMC Nursing. 21(1). doi: 10.1186/s12912-022-00962-7. Full text in Research Archive Show summary

  Background High levels of psychological distress and poor overall quality of life (QOL) have been identified among nursing students during the COVID-19 pandemic. The pandemic necessitated improvised reconstructions of educational curriculums and restrictions in clinical placement and training at campuses, possibly reducing educational quality. Objectives We explored whether baccalaureate nursing students’ concerns and satisfaction with the educational curriculum, focusing on the conduct of clinical training, were associated with perceived psychological distress and overall QOL. Methods Baccalaureate nursing students (N=6088) from five Norwegian universities were invited to an internet-based, cross-sectional survey during the second wave of the pandemic. The survey included COVID-19 specific questions on health, education and clinical training, the Fear of COVID-19 scale (FCV-19S), The Hopkins Symptom Checklist (SCL-5) and overall QOL. Data from national surveys on satisfaction with the educational curriculum, before and during the pandemic were used for comparison. Results In total, 2605 (43%) students responded, of whom 1591 (61%) had been engaged in clinical training during the pandemic. Overall, 53% were either satisfied or fully satisfied with their educational curriculum, with the level of satisfaction being significantly lower than pre-pandemic reference values. Also, 79% were concerned or highly concerned about the educational quality. In multiple regression analyses for all students, lower levels of satisfaction and higher levels of quality concerns were associated with worse SCL-5 scores. Furthermore, satisfaction with the educational curriculum was positively associated with overall QOL. For students engaged in clinical training, only concerns about infecting others were additionally associated with psychological distress. None of the items related to clinical training were associated with overall QOL. Conclusion Nursing students’ educational satisfaction and quality concerns may significantly impact perceived psychological distress and overall QOL during a pandemic. However, with necessary adaptations implemented, concerns regarding the conduct of clinical training account for little of these associations.

• Rohde, Gudrun E. (2022). Health related quality of life in parents of adolescents one year into the COVID-19 pandemic: A two-year longitudinal study. Invited to write an Editorial. Quality of Life Research. ISSN 0962-9343. Full text in Research Archive
• Mikkelsen, Hilde Elisabeth Timenes; Skarstein, Siv; Helseth, Sølvi; Småstuen, Milada Cvancarova; Haraldstad, Kristin & Rohde, Gudrun E. (2022). Health-related quality of life, health literacy and COVID-19-related worries of 16- to 17-year-old adolescents and parents one year into the pandemic: a cross-sectional study. BMC Public Health. 22(22). doi: 10.1186/s12889-022-13737-1. Full text in Research Archive Show summary

  Background: The uncertain and challenging situation caused by the COVID-19 pandemic affects adolescents and their parents in an exceptional way. More knowledge of health-related quality of life (HRQoL), health literacy (HL) and COVID-19-related worries in adolescents and parents 1 year into the pandemic is needed. The present study aimed to describe HRQoL, HL and COVID-19-related worries of 16- to 17-year-old adolescents and parents of adolescents. Further, to assess the strength of associations between gender, HL, COVID-19-related worries and HRQoL. Methods: A cross-sectional study involving 215 adolescents and 320 parents was conducted, exploring HRQoL, HL, COVID-19-related worries and sociodemographic variables. KIDSCREEN-10 and RAND-36 were used to measure HRQoL. Data were analyzed using bivariate methods, multiple linear regression and robust regression. Results: Adolescents’ HRQoL was notably lower compared to previous Norwegian studies and European norms. Parents’ HRQoL was comparable to Norwegian norms. Adolescents and parents reported moderate-to-high HL and high degrees of COVID-19-related worries. Females reported significantly lower HRQoL and more worries compared to males. In adolescents, higher HL was significantly associated with higher HRQoL. COVID-19-related worries were not significantly associated with HRQoL. In parents, higher HL in the “understand health information” domain was significantly associated with higher HRQoL for mental well-being (mental component sum scores [MCS]) and with lower HRQoL for physical well-being (physical component sum scores [PCS]). Being worried a lot about infecting others and about family/friends becoming sick was significantly associated with higher MCS and lower MCS, respectively. COVID-19-related worries were not significantly associated with PCS. Conclusions: Our results indicate that the pandemic has a major negative impact on adolescents’ HRQoL. Parents’ HRQoL remained unchanged and comparable to previous studies. Our study demonstrates that HL, gender and COVID-19-related worries are significantly associated with adolescents’ and parents’ HRQoL, indicating that efforts aimed at increasing their HL might indirectly affect their HRQoL as well and that gender-specific interventions or strategies could be beneficial.

• Lien, Anette Windsland & Rohde, Gudrun E. (2022). Coping in the role as next of kin of a person with a brain tumour: a qualitative metasynthesis. BMJ Open. 12. doi: 10.1136/bmjopen-2021-052872. Full text in Research Archive Show summary

  Objective Being the next of kin of a person with a brain tumour is a stressful experience. For many, being a next of kin involves fear, insecurity and overwhelming responsibility. The purpose of this study was to identify and synthesise qualitative original studies that explore coping in the role as next of kin of a person with a brain tumour. Methods A qualitative metasynthesis guided by Sandelowski and Barroso’s guidelines was used. The databases Medline, CHINAL and PsycINFO were searched for studies from January 2000 to 18 January 2022. Inclusion criteria were qualitative original studies that aimed to explore coping experience by the next of kin of a person with brain tumour. The next of kin had to be 18 years of age or older. Results Of a total of 1476 screened records data from 20 studies, including 342 participants (207 females, 81 males and 54 unclassified) were analysed into metasummaries and a metasynthesis. The metasynthesis revealed that the next of kin coping experiences were characterised by two main themes: (1) coping factors within the next of kin and as a support system, such as their personal characteristics, perceiving the role as meaningful, having a support system, and hope and religion; (2) coping strategies—control and proactivity, including regaining control, being proactive and acceptance. Conclusion Next of kin of patients with brain tumours used coping factors and coping strategies gathered within themselves and in their surroundings to handle the situation and their role. It is important that healthcare professionals suggest and facilitate these coping factors and strategies because this may reduce stress and make the role of next of kin more manageable.

• Rohde, Gudrun E.; Helseth, Sølvi; Skarstein, Siv; Småstuen, Milada Cvancarova; Mikkelsen, Hilde Elisabeth Timenes & Haraldstad, Kristin (2022). Health-related quality of life in parents of adolescents one year into the COVID-19 pandemic: a two-year longitudinal study. Health and Quality of Life Outcomes. 20. doi: 10.1186/s12955-022-02069-8. Full text in Research Archive
• Schwartz, Carolyn E.; Huang, I-Chan; Rohde, Gudrun E. & Skolasky, Richard L (2022). Listening to the elephant in the room: response-shift effects in clinical trials research. Journal of Patient-Reported Outcomes. 6(1). doi: 10.1186/s41687-022-00510-6. Full text in Research Archive
• Mikkelsen, Hilde Elisabeth Timenes; Småstuen, Milada Cvancarova; Haraldstad, Kristin; Helseth, Sølvi; Skarstein, Siv & Rohde, Gudrun E. (2022). Changes in health-related quality of life in adolescents and the impact of gender and selected variables: a two-year longitudinal study. Health and Quality of Life Outcomes. 20(20). doi: 10.1186/s12955-022-02035-4. Full text in Research Archive Show summary

  Background: Increased knowledge about factors that can impact changes in adolescents’ health-related quality of life (HRQOL) is needed. The present study aimed to investigate possible HRQOL changes in adolescents at 14 and 16 years, and assess the impact of sociodemographic factors, gender, pain, self-esteem, self-efcacy, loneliness, and stress on HRQOL changes over time. Further, to assess HRQOL stratifed by gender. Methods: A longitudinal study involving 211 adolescents was conducted. Sociodemographic variables, pain, selfesteem, self-efcacy, loneliness, and stress were all assessed with well-validated instruments. KIDSCREEN-27 was used to measure HRQOL. Data were analyzed using independent t-tests, paired samples t-tests, and linear mixed models for repeated measures. Results: When all variables were added to the linear mixed models, stress, loneliness, and pain were signifcantly, independently associated with a reduction in HRQOL change scores for four of the fve KIDSCREEN subscales. Time was signifcantly associated with a reduction in physical and psychological well-being. Self-efcacy and self-esteem were signifcantly associated with an increase in HRQOL change scores for four and two subscales, respectively. Male gender was signifcantly negatively associated with changes in social support and peers compared to female gender. Conclusion: Our results demonstrated a signifcant decline in adolescents’ HRQOL regarding physical and psychological well-being for the age range 14–16 years. Furthermore, we found that stress, loneliness, and pain have a signifcant negative impact on HRQOL changes, whereas self-esteem and self-efcacy have a signifcant positive impact. Our results highlight the importance of increased understanding regarding factors associated with changes in adolescents’ HRQOL to enable accurate and strategic interventions.

• Grasaas, Erik; Skarstein, Siv; Mikkelsen, Hilde Elisabeth Timenes; Småstuen, Milada Cvancarova; Rohde, Gudrun E. & Helseth, Sølvi [Show all 7 contributors for this article] (2022). The relationship between stress and health-related quality of life and the mediating role of self-efficacy in Norwegian adolescents: a cross-sectional study. Health and Quality of Life Outcomes. 20, p. 1–9. doi: 10.1186/s12955-022-02075-w. Full text in Research Archive
• Rohde, Gudrun E.; Helseth, Sølvi; Mikkelsen, Hilde Elisabeth Timenes; Skarstein, Siv; Småstuen, Milada Cvancarova & Haraldstad, Kristin (2022). Stress, pain, and work affiliation are strongly associated with health-related quality of life in parents of 14-15-year-old adolescents. Health and Quality of Life Outcomes. 20(1), p. 1–10. doi: 10.1186/s12955-021-01913-7. Full text in Research Archive Show summary

  Background: For many adults, their role as a parent is a vital part of their lives. This role is likely to be associated with a parent’s health-related quality of life (HRQOL). The aim of this study was to explore the associations between gender, demographic and psychosocial variables, pain, and HRQOL in parents of 14–15-year-old adolescents. Methods: This was a cross-sectional study that included 561 parents. Data on demographic, psychosocial variables and pain were collected using validated instruments. HRQOL was assessed using the RAND-36. Data were analysed using univariate and hierarchical multiple linear regression analyses. Results: Four hundred and thirty-six (78%) mothers and 125 (22%) fathers with a mean age of 45 (SD=5) years were included. Eighty-one per cent were married/cohabiting, 74% worked full time, and 50% had university education of more than 4 years. Almost one-third reported daily or weekly pain, and more than half (58%) reported using pain analgesics during the previous 4 weeks. Mothers reported signifcantly lower scores on self-efcacy, self-esteem and for all RAND-36 domains, including the physical component summary (PCS) and mental component summary (MCS) and experienced greater stress than fathers. Hierarchical regression analyses showed that working part-time (beta=0.40) or full time (beta=0.52) (reference: not working) had the strongest positive efect on PCS. Absence from work for >10 days (beta=−0.24) (reference: no absence), short-term pain (beta=−0.14), chronic pain (beta=−0.37) (reference: no pain), and stress (beta=−0.10) had the strongest negative efects on PCS. High self-esteem (beta=0.11) had the strongest positive efect, whereas stress (beta=−0.58) and absence from work for>10 days (beta=−0.11) (reference: no absence) had the strongest negative efects on MCS. Conclusion: Mothers reported signifcantly lower scores on self-efcacy, self-esteem, and HRQOL, and experienced greater stress than the fathers. A high proportion of parents reported pain. Pain, stress, and low work afliation were strongly associated with decreased HRQOL in parents. We recommend that parents of adolescents should be provided guidance about coping with pain and stress, and facilitation of a strong work afliation because these seem to be important to parents’ HRQOL.

• Rotmund, Maria; Sodergren, Samantha C; Rohde, Gudrun E.; Rojas, Teresa de; Paratico, Gloria & Albini, Giorgia [Show all 10 contributors for this article] (2022). Updating our understanding of health-related quality of life issues in children with cancer: a systematic review of patient-reported outcome measures and qualitative studies. Quality of Life Research. ISSN 0962-9343. doi: 10.1007/s11136-022-03259-z. Full text in Research Archive
• Fegran, Liv; Johannessen, Berit; Ludvigsen, Mette Spliid; Westergren, Thomas; Høie, Magnhild & Slettebø, Åshild [Show all 9 contributors for this article] (2021). Experiences of a non-clinical set of adolescents and young adults living with persistent pain: a qualitative metasynthesis. BMJ Open. 11(4), p. 1–11. doi: 10.1136/bmjopen-2020-043776. Full text in Research Archive Show summary

  Purpose Around 15%–30% of adolescents and young adults (AYAs) experience persistent or chronic pain. The purpose of this study was to synthesise evidence from qualitative primary studies on how AYAs in a non-clinical population experience living with persistent pain. Method A qualitative metasynthesis guided by Sandelowski and Barroso’s guidelines was used. The databases Medline, Embase, Cinahl, PsycINFO, Mednar and ProQuest were searched for studies from 1 January 2005 to 15 February 2021. Inclusion criteria were AYAs aged 13–24 years with first-hand experience of living with persistent, recurrent or episodic non-clinical pain in any body site. Pain associated with a medical diagnosis, malignant diseases, medical procedures or sport activities was excluded. Results Of 2618 screened records, data from nine studies conducted in a Western cultural context including 184 participants (127 female and 57 male aged 11–28 years) were analysed into metasummaries and a metasynthesis. Headaches was the most focused pain condition (n=5), while three of the studies did not specify type of pain. The participants’ experiences were characterised by (1) juggling pain with everyday life; (2) exploring sources of information to manage pain; (3) AYAs’ use of medication to find relief and (4) non-pharmacological strategies for pain relief. Conclusion These AYAs experience of how pain influences everyday life, and their striving to find relief from pain by support from family, friends, professionals and the Internet should be strongly respected. Public health nurses and other healthcare professionals encountering AYAs need to respect their pain experiences, and to support them in healthy coping strategies. Further studies on this issue are needed, especially research focusing on AYAs pain in exposed populations and AYAs from non-Western cultures.

• Beisland, Elisabeth Grov; Gjeilo, Kari Hanne; Andersen, John Roger; Bratås, Ola; Bø, Bodil & Haraldstad, Kristin [Show all 15 contributors for this article] (2021). Quality of life and fear of COVID-19 in 2600 baccalaureate nursing students at five universities: a cross-sectional study. Health and Quality of Life Outcomes. 19. doi: 10.1186/s12955-021-01837-2. Full text in Research Archive Show summary

  Background The COVID-19 pandemic has caused significant disruptions in the implementation of programs across educational institutions. Nursing students, being both young adults and by practical training, part of the health care system, may be particularly vulnerable during the COVID-19 pandemic. The purpose of this study was to explore the associations between self-reported fear of COVID-19, general health, psychological distress and overall quality of life (QoL) in a sample of Norwegian baccalaureate nursing students compared to reference data. Methods The survey targeted baccalaureate nursing students from five universities in February 2021. An electronic questionnaire consisted of the Fear of COVID-19 Scale (FCV-19S), the Hopkins Symptom Checklist 5 (SCL-5), one general health and one overall QoL question. The respondents’ mean scores were compared to reference data. Hierarchical regression analyses were conducted, and effect sizes (Cohen’s d) were evaluated. Results In total, 2605 out of 6088 (43%) students responded. Their FCV-19S scores (mean 2.45, CI 2.42, 2.48) were significantly higher than those of the reference population (mean 1.8, P < 0.001). Nursing students scores showed significantly lower general health (mean 3.50 ± 0.93 SD, population mean = 3.57, Cohen’s d = 0.07), higher levels of psychological distress (mean 2.68 ± 1.03 SD, population mean = 2.12, Cohen’s d = 0.55) and lower overall QoL (mean 5.50 ± 2.16 SD, population mean = 8.00, Cohen’s d = 1.16) compared to pre-pandemic reference data. FCV-19S scores were significantly associated with levels of general health (Cohen’s d = 0.26), psychological distress (Cohen’s d = 0.76) and overall QoL (Cohen’s d = 0.18). Conclusions Baccalaureate nursing students reported worse outcomes during the Covid-19 pandemic on general health, psychological distress and overall QoL compared to the reference population. Level of fear of Covid-19, however, accounted for few of these differences. Other factors related to the pandemic may have reduced nursing students’ overall QoL.

• Astrup, Guro Lindviksmoen; Rohde, Gudrun E.; Rimehaug, Stein Arne; Andersen, Marit Helen; Bernklev, Tomm & Bjordal, Kristin [Show all 11 contributors for this article] (2021). Comparing the use of patient-reported outcomes in clinical studies in Europe in 2008 and 2018: a literature review. Quality of Life Research. ISSN 0962-9343. 31. doi: 10.1007/s11136-021-02946-7. Full text in Research Archive Show summary

  Purpose Several guidelines for the use of patient-reported outcomes (PROs) in clinical studies have been published in the past decade. This review primarily aimed to compare the number and compliance with selected PRO-specifc criteria for reporting of clinical studies in Europe using PROs published in 2008 and 2018. Secondarily, to describe the study designs, PRO instruments used, patient groups studied, and countries where the clinical studies were conducted. Methods A literature search was conducted in MEDLINE to identify eligible publications. To assess the number of publications, all abstracts were screened for eligibility by pairs of reviewers. Compliance with PRO-specifc criteria and other key characteristics was assessed in a random sample of 150 eligible full-text publications from each year. Randomized controlled trials (RCTs) were assessed according to the full CONSORT-PRO checklist. Results The search identifed 1692 publications in 2008 and 4290 in 2018. After screening of abstracts, 1240 from 2008 and 2869 from 2018 were clinical studies using PROs. By full-text review, the proportion of studies discussing PRO-specifc limitations and implications was higher in 2018 than in 2008, but there were no diferences in the other selected PRO-specifc criteria. In 2018, a higher proportion of studies were longitudinal/cohort studies, included≥300 patients, and used electronic administration of PRO than in 2008. The most common patient groups studied were those with cancer or diseases of the musculoskeletal system or connective tissue. Conclusion The number of clinical studies from Europe using PROs was higher in 2018 than in 2008, but there was little diference in compliance with the PRO-specifc criteria. The studies varied in terms of study design and PRO instruments used in both publication years.

• Berg, Kari Hansen; Rohde, Gudrun Elin; Pripp, Are Hugo; Prøven, Anne; Benestad, Espen Esther Pirelli & Østensen, Monika Elisabeth [Show all 7 contributors for this article] (2021). Increased proportion of comorbidities but no deterioration of sexual quality of life during a 5-year follow-up in patients with axial spondyloarthritis in the biologic treatment era. Rheumatology. ISSN 1462-0324. 60(9), p. 4112–4120. doi: 10.1093/rheumatology/keaa887. Full text in Research Archive
• E, Schwartz Carolyn; Rohde, Gudrun E.; Elijah, Biletch; BB, Stuart Richard; I-Chan, Huang & Joseph, Lipscomb [Show all 8 contributors for this article] (2021). If it's information, it's not "bias": a scoping review and proposed nomenclature for future response-shift research. Quality of Life Research. ISSN 0962-9343. doi: 10.1007/s11136-021-03023-9. Full text in Research Archive
• Mikkelsen, Hilde Timenes; Haraldstad, Kristin; Helseth, Sølvi; Skarstein, Siv; Småstuen, Milada Cvancarova & Rohde, Gudrun Elin (2021). Pain and health-related quality of life in adolescents and the mediating role of self-esteem and self-efficacy: a cross-sectional study including adolescents and parents. BMC Psychology. 9(1), p. 1–16. doi: 10.1186/s40359-021-00629-z. Full text in Research Archive Show summary

  Background: To promote health-related quality of life (HRQOL) in adolescents with pain, it is important to study factors associated with pain. This study aimed to describe selected factors and pain in 14–15-year-old adolescents and their parents, to assess how these factors are associated with adolescent pain groups, and to explore whether the relationship between pain intensity and HRQOL in adolescents with persistent pain is mediated by self-esteem and self-efficacy. Methods: A cross-sectional study was performed among 508 dyads of adolescents (14–15 years) and parents in a school-based setting. Among these, 148 adolescents had persistent pain. We explored the following variables: HRQOL, pain, self-efficacy, self-esteem, sleep, loneliness, stress and sociodemographic variables. All variables were assessed with well-validated instruments. HRQOL was measured with KIDSCREEN-27. Analyses included Chi-square, ANOVA, Mann–Whitney U tests, Kruskal–Wallis and the PROCESS macro method for mediation analyses. Results: Adolescents with pain reported significantly higher levels of stress, loneliness and lack of sleep and lower levels of self-efficacy, self-esteem and HRQOL compared to adolescents without pain. More girls than boys reported pain. Adolescents with persistent pain scored significantly worse on self-esteem, stress, loneliness, lack of sleep, school absence, pain and HRQOL compared to adolescents with shorter pain duration. Adolescent pain groups did not differ significantly considering parental factors. However, more adolescents with persistent pain reported that someone in their family had pain. The associations between pain intensity and the HRQOL subscales in adolescents with persistent pain were completely mediated by self-esteem, but not by self-efficacy. The highest degree of mediation was estimated for the HRQOL subscale school environment (indirect effect = 73.5%). Conclusions: Our findings highlight the complexity within adolescent pain, demonstrating that adolescents with pain differ from adolescents without pain when it comes to gender, school absence, factors within-person and between-persons. Longer pain duration makes adolescents more vulnerable. We confirm the importance of resilience factors for HRQOL but indicate that self-esteem is more important than self-efficacy. To promote HRQOL in adolescents with persistent pain, a strengthening of both their self-esteem and self-efficacy is recommended. We highlight the need for an individual, holistic approach to adolescent pain.

• Sodergren, Samantha C; Wheelwright, Sally; Fitzsimmons, Deborah; Efficace, Fabio; Sprangers, Mirjam A. G. & Fayers, Peter [Show all 22 contributors for this article] (2021). Developing Symptom Lists for People with Cancer Treated with Targeted Therapies. Targeted oncology. ISSN 1776-2596. 16, p. 95–107. doi: 10.1007/s11523-020-00769-z. Full text in Research Archive
• Johannessen, Berit; Høie, Magnhild; Haraldstad, Kristin; Helseth, Sølvi; Fegran, Liv & Westergren, Thomas [Show all 8 contributors for this article] (2020). School nurses’ and teachers’ perceptions of pain in young immigrants living in Norway. International Journal of Migration, Health and Social Care. ISSN 1747-9894. 16(1). doi: 10.1108/IJMHSC-01-2019-0005. Full text in Research Archive Show summary

  Purpose The number of adolescents experiencing pain is increasing. Pain has a major impact on several areas of daily living, such as function at school and school absenteeism, loss of appetite and socializing. One out of ten pupils in Norwegian schools is immigrants, and surveys have shown that immigrants suffer from poor health more often than the general population. The purpose of this study was to explore how school nurses and teachers experience pain in young immigrants in the school setting. Design/methodology/approach A qualitative design using focus group interviews was chosen for data collection. A total of 11 focus groups (17 school nurses and 25 teachers) consisting of school nurses and teachers in junior high schools (age: 13-16 years) in Southern Norway were conducted. Data were analyzed using a qualitative content analysis. Findings School nurses and teachers experienced communication of pain with young immigrants as characterized by cultural differences and language problems. Immigrants waiting for residency permits experienced pain more often than others. They also experienced that young immigrants often were absent from school and used pain as an excuse for not participating in classes, but this was not the case at the special school for immigrants. During Ramadan, they experienced that immigrant pupils had an increase of pain, especially headaches. Originality/value Culture affects the assessment and management of pain and different strategies may assist school nurses and teachers in their encounter with young immigrants with pain. There is a need for education in cultural competence among teachers and school nurses.

• Rohde, Gudrun E.; Berg, Kari Ellen; Pripp, Are Hugo; Prøven, Anne & Haugeberg, Glenn (2020). No deterioration in health-related quality of life in patients with axial spondyloarthritis followed for 5 years in ordinary outpatient clinics in the biological treatment era. Quality of Life Research. ISSN 0962-9343. 29(1), p. 99–107. doi: 10.1007/s11136-019-02308-4. Full text in Research Archive Show summary

  Background: Axial spondyloarthritis (ax-SpA) causes pain, fatigue, stiffness, loss of physical function and impaired health-related quality of life (HRQOL). Aims: The study aimed to explore the changes in HRQOL over 5 years in patients with ax-SpA and to identify baseline predictors associated with changes in HRQOL assessed using three HRQOL measures. Methods: Demographic, disease, medication and HRQOL data were collected at baseline and at 5-year follow-up. HRQOL was assessed using SF-6D, 15D and SF-36. Analyses involved McNemar, independent paired t tests and multiple regression. Results: In the 240 (women 31%, men 69%) ax-SpA patients assessed (mean age 46 years), measures reflecting disease activity decreased and co-morbidities increased, and more patients were treated with biologic drugs during follow-up. No deterioration in HRQOL was observed between baseline and 5-year follow-up; indeed, there was a significant increase in SF-6D and SF-36 PCS scores. Improvement in HRQOL measured by SF-6D was associated with younger age, higher education, low Bath Ankylosing Spondylitis (BAS) Activity Index (BASDAI), high BAS Patient Global Score and high C-reactive protein; improvement in SF-36 PCS was associated with younger age, higher education, low BASDAI and no use of biological treatment at baseline. Conclusion: Our ax-SpA outpatient clinic patients, with more patients treated with biologic drugs during the 5-year follow-up, did not deteriorate in HRQOL. In fact, the physical dimension in HRQOL improved over the years, as did measures reflecting disease activity. Our study adds evidence to the importance of suppressing inflammation to maintain and improve HRQOL in ax-SpA patients.

• Mikkelsen, Hilde Elisabeth Timenes; Haraldstad, Kristin; Helseth, Sølvi; Skarstein, Siv; Småstuen, Milada Cvancarova & Rohde, Gudrun E. (2020). Health‑related quality of life is strongly associated with self‑efficacy, self‑esteem, loneliness, and stress in 14–15‑year‑old adolescents: a cross‑sectional study. Health and Quality of Life Outcomes. 18. doi: 10.1186/s12955-020-01585-9. Full text in Research Archive Show summary

  Background: To enhance and better understand health-related quality of life (HRQOL) in adolescents, it is important to study factors associated with HRQOL. The present study aimed to assess possible associations between sociodemographic variables, self-efcacy, self-esteem, pain, sleep, loneliness, stress and HRQOL in 14 to 15-year-old adolescents. Methods: A cross-sectional study was performed among 696 adolescents (14–15 years) in a school-based setting. Sociodemographic variables, self-efcacy, self-esteem, pain, sleep, loneliness and stress were analyzed. The variables were all assessed with well-validated instruments. HRQOL was analyzed using KIDSCREEN 27. Analyses included Chisquare, independent t-tests, Mann–Whitney U tests, linear regression analyses and hierarchical regression analyses. The results from linear regression models were expressed as standardized beta. Results: The adolescents generally reported high levels of HRQOL. However, girls scored signifcantly worse on HRQOL, self-efcacy, self-esteem, pain, sleep, loneliness and stress compared to boys. Using hierarchical regression analyses we found that Self-efcacy (beta=0.11–0.24), Self-esteem: (beta=0.12–0.21), Loneliness: (beta=−0.24 to −0.45) and Stress: (beta=−0.26 to −0.34) revealed the strongest associations with the HRQOL dimensions. Sociodemographic-, pain- and sleep related covariates were all signifcantly associated with some of the KIDSCREEN subscales, however their efect on the outcome was smaller than for the psychosocial variables listed above. Being a girl, not living with both parents, not having both parents working, being absent from school more than 4 days, having pain and having lack of enough sleep were all independently negatively associated with HRQOL. Conclusions: HRQOL is strongly associated with self-efcacy, self-esteem, loneliness and stress in 14 to 15-year-old adolescents. Our fndings indicate that positive psychosocial factors such as self-efcacy and self-esteem might play a bufer role for negative psychosocial factors (e.g. stress) in adolescents. Further, our results show that girls score signifcantly worse on factors that are associated to HRQOL compared to boys. To improve HRQOL in school-based populations of adolescents, we suggest that future interventions should aim to strengthen self-efcacy and self-esteem. We recommend gender specifc interventions.

• Berg, Kari Hansen; Rohde, Gudrun E.; Prøven, Anne; Benestad, Esben Esther Pirelli; Østensen, Monika Elisabeth & Haugeberg, Glenn (2019). Sexual Quality of Life in Patients with Axial Spondyloarthritis in the Biologic Treatment Era. Journal of Rheumatology. ISSN 0315-162X. 46(9), p. 1075–1083. doi: 10.3899/jrheum.180413. Full text in Research Archive Show summary

  Objective. To examine the relationship between demographics, disease-related variables, treatment, and sexual quality of life (SQOL) in men and women with axial spondyloarthritis (axSpA). Methods. AxSpA patients were consecutively recruited from 2 rheumatology outpatient clinics in southern Norway. A broad spectrum of demographics, disease, treatment, and QOL data were systematically collected. SQOL was assessed using the SQOL-Female (SQOL-F) questionnaire (score range 18–108). Appropriate statistical tests were applied for group comparison, and the association between independent variables and SQOL-F was examined using multiple linear regression analysis. Results. A total of 360 (240 men, 120 women) axSpA patients with mean age 45.5 years and disease duration 13.9 years were included. Seventy-eight percent were married/cohabiting, 26.7% were current smokers, 71.0% were employed, 86.0% performed > 1-h exercise per week, and 88.0% were HLA-B27–positive. Mean (SD) values for disease measures were C-reactive protein (CRP) 8.5 (12.1) mg/l, Bath Ankylosing Spondylitis Disease Activity Index 3.1 (2.1), Bath Ankylosing Spondylitis Global Score (BAS-G) 3.8 (2.5), Bath Ankylosing Spondylitis Functional Index 2.7 (2.2), and Health Assessment Questionnaire 0.6 (0.5). The proportion of patients using nonsteroidal antiinflammatory drugs was 44.0%, synthetic disease-modifying antirheumatic drugs (DMARD) 5.0%, and biologic DMARD 24.0%. Mean (SD) total sum score for SQOL was 76.6 (11.3). In multivariate analysis, female sex, increased body mass index, measures reflecting disease activity (BAS-G and CRP), and current biologic treatment were independently associated with a lower SQOL. Conclusion. Our data suggest that inflammation in patients with axSpA even in the biologic treatment era reduces SQOL.

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• Rabben, Jannicke; Fossum, Mariann & Rohde, Gudrun E. (2025). Nurses' experiences and perceptions of involvement in shared decision-making in palliative cancer care; a qualitative interview study. Full text in Research Archive
• Rabben, Jannicke; Fossum, Mariann & Rohde, Gudrun E. (2025). The 19th World Congress of the European Association for Palliative Care 29 – 31 May 2025 Helsinki, Finland: Nurses’ experiences and perceptions of involvement in shared decision-making in palliative cancer care; a qualitative interview study. Palliative Medicine. ISSN 0269-2163. 39(2_suppl), p. 490–490. doi: 10.1177/02692163251335482. Full text in Research Archive
• Huang, I-Chan; Rohde, Gudrun E. & Baker, Justin N. (2025). Advancing response-shift assessment: insights and directions from a series of ISOQOL SIG meetings. Quality of Life Research. ISSN 0962-9343. doi: 10.1007/s11136-025-03943-w. Full text in Research Archive
• Reppen, Nils Kristian; Rabben, Jannicke; Rohde, Gudrun E. & Mikkelsen, Hilde Elisabeth Timenes (2024). Nå kan du ta kreftsykepleieutdanning på Sørlandet. [Internet]. Sykepleien.no. doi: https:/sykepleien.no/2024/12/na-kan-du-ta-kreftsykepleie-utdanning-pa-sorlandet. Full text in Research Archive
• Rohde, Gudrun Elin; Haraldstad, Kristin; Hagen, Milada; Mikkelsen, Hilde E. Timenes; Skarstein, Siv & Helseth, Sølvi (2024). Health-related quality of life in parents of adolescents assessed over a four-years period (2019, 2121 and 2023). Full text in Research Archive
• E, Schwartz Carolyn; Huang, I-Chan; Rohde, Gudrun Elin & Skolasky, Richard L (2024). Emerging priorities and concerns in the wake of the COVID-19 pandemic: Qualitative and quantitative findings from a United States national survey. Full text in Research Archive
• Sødergren, S.; Husson, Olga; Rohde, Gudrun Elin & Darlington, AS (2024). Development of an EORTC quality of life questionnaire specific to adolescents and young adults with cancer: Measuring what matters most to this unique patient group. Quality of Life Research. ISSN 0962-9343. doi: 10.1007/s11136-024-03786-x. Full text in Research Archive
• Rabben, Jannicke; Vivat, Bella; Fossum, Mariann & Rohde, Gudrun Elin (2024). The 13th World Research Congress of the European Association for Palliative Care: Patients and family caregivers are unsure about how they or nurses are involved in shared decision-making. Palliative Medicine. ISSN 0269-2163. doi: 10.1177/02692163241242338. Full text in Research Archive
• E, Schwartz Carolyn; I-Chan, Huang; Rohde, Gudrun Elin & Skolasky, Richard L. (2024). Uncovering the story within the story: A scoping review of response shift in qualitative research. Full text in Research Archive
• Janssen, S.; Husson, Olga; Sødergren, S.; Rohde, Gudrun Elin & Darlington, AS (2024). Core patient-centered outcomes for Adolescents and Young Adults (AYAs) with cancer: A comprehensive literature review from the STRONG-AYA project/consortium. Full text in Research Archive
• Rohde, Gudrun E. (2024). Vitenskap og forskning med et klinisk og pasientnært perspektiv Vitenskaper i endring - møteserie. Full text in Research Archive
• Andenæs, Randi; Andersen, Marit Helen; Helseth, Sølvi; Haraldstad, Kristin; Rohde, Gudrun E. & Rokne, Berit [Show all 7 contributors for this article] (2024). Går vi baklengs inn i fremtiden, minister Hoel? Full text in Research Archive
• Rabben, Jannicke; Fossum, Mariann; Vivat, Bella & Rohde, Gudrun Elin (2023). Patients’, relatives’, and healthcare professionals’ experiences and perspectives of shared decision-making in palliative cancer care: A systematic review and meta-synthesis. Annals of Oncology. ISSN 0923-7534. 34 (Supplement 2), p. S1234–S1234. doi: 10.1016/j.annonc.2023.09.1625. Full text in Research Archive
• Rohde, Gudrun E. & Mayo, N (2022). Revealing hidden change through a response shift lens: The role of individualized methods. Full text in Research Archive
• Rohde, Gudrun E.; Helseth, Sølvi; Småstuen, Milada Cvancarova; Mikkelsen, Hilde Elisabeth Timenes; Skarstein, Siv & Haraldstad, Kristin (2022). Changes in health-related quality of life in parents of adolescents, and the impact of gender, sociodemographic and psychological factors, and pain on the changes: A two-year longitudinal study. Full text in Research Archive
• Schwartz, Carolyn E.; Huang, I-Chan; Rohde, Gudrun E. & Skolasky, Richard L (2022). Listening to the elephant in the room: response-shift effects in clinical trials research. Full text in Research Archive
• Rohde, Gudrun E. (2022). Helse og livskvalitet. Full text in Research Archive
• Skolasky, Richard L; Rohde, Gudrun E.; Mayo, N; Huang, I-Chan & Schwartz, Carolyn E. (2022). ISOQOL RS SIG Discussion Panel. Full text in Research Archive
• Hansen, Linda Iren Mihaila; Kristoffersen, Karen; Omland, Lisa; Munday, Judy & Rohde, Gudrun Elin (2022). Documentation of the temperature of patients undergoing laprascopic surgery. Full text in Research Archive
• Vivat, B; Speck, Peter; Uddin, Imran; Rohde, Gudrun E.; Jones, L & Candy, Bridget [Show all 8 contributors for this article] (2022). Cochrane Pain Palliative and Supportive Care (PaPaS) Group review of spiritual and/or religious interventions for adults with terminal illnesses, 2011-21. Update of Candy et al. 2012. Full text in Research Archive
• Rohde, Gudrun E. (2021). Helse og livskvalitet; «Forskning viser at norsk ungdom i hovedsak rapporterer om god helse og livskvalitet, men hvordan går det etter 1 år med koronapandemi?». Full text in Research Archive
• Flølo, Tone Nygaard; Gjeilo, Kari Hanne; Andersen, John Roger; Haraldstad, Kristin; Hjelmeland, Inger Helen Hardeland & Iversen, Marjolein M. [Show all 13 contributors for this article] (2021). Associations between educational concerns and satisfaction, psychological distress and quality of life in baccalaureate nursing students during the COVID-19 pandemic. Full text in Research Archive
• Rohde, Gudrun E. (2021). Helse og livskvalitet; «Forskning viser at norsk ungdom i hovedsak rapporterer om god helse og livskvalitet, men hvordan går det etter 1 år med koronapandemi?». Full text in Research Archive
• Rohde, Gudrun E. (2021). Helse og livskvalitet; «Forskning viser at norsk ungdom i hovedsak rapporterer om god helse og livskvalitet, men hvordan går det etter 1 år med koronapandemi?». Full text in Research Archive
• Beisland, Elisabeth Grov; Gjeilo, Kari Hanne; Andersen, John Roger; Bratås, Ola; Bø, Bodil & Haraldstad, Kristin [Show all 15 contributors for this article] (2021). Sykepleierstudentene oppgir lav livskvalitet under pandemien. Sykepleien. ISSN 0039-7628. Full text in Research Archive
• Mikkelsen, Hilde E. Timenes; Skarstein, Siv; Helseth, Sølvi; Småstuen, Milada Cvancarova; Haraldstad, Kristin & Rohde, Gudrun Elin (2021). Health-related quality of life, health literacy and COVID-19-related worries of 16-17-year-old adolescents and parents, one year into the pandemic. Full text in Research Archive
• Haraldstad, Kristin & Rohde, Gudrun E. (2021). Livskvalitet og helse under covid-19, hvordan har sykepleiestudentene hatt det? [Internet]. https://www.uia.no/om-uia/podcast/helse-og-idrettspraten. Full text in Research Archive
• Rotmund, Maria; Sodergren, Samantha C; Rohde, Gudrun E.; Rojas, Teresa de; Paratico, Gloria & Albini, Giorgia [Show all 10 contributors for this article] (2021). What matters to children with cancer - A systematic review of qualitatitative studies and patient-reported outcome measures (PROMS). Full text in Research Archive
• E, Schwartz Carolyn; Rohde, Gudrun E.; Elijah, Biletch; BB, Stuart Richard; I-Chan, Huang & Joseph, Lipscomb [Show all 8 contributors for this article] (2021). Scoping review of the medical literature and description of research question and methods related to response shift detection methods. Full text in Research Archive
• E, Schwartz Carolyn; Rohde, Gudrun E.; Elijah, Biletch; BB, Stuart Richard; I-Chan, Huang & Joseph, Lipscomb [Show all 8 contributors for this article] (2021). Moving away from “bias”: Proposed nomenclature for portraying response-shift research. Full text in Research Archive
• Astrup, Guro Lindviksmoen; Rohde, Gudrun E.; Rimehaug, Stein Arne; Andersen, Marit Helen; Bernklev, Tomm & Bjordal, Kristin [Show all 10 contributors for this article] (2020). Comparing the use of patient-reported outcomes in clinical studies in Europe in 2008 and 2018; a literature review. Full text in Research Archive
• Mikkelsen, Hilde Elisabeth Timenes; Haraldstad, Kristin; Helseth, Sølvi; Skarstein, Siv; Småstuen, Milada Cvancarova & Rohde, Gudrun E. (2020). Health-related quality of life is strongly associated with self-efficacy, self-esteem, loneliness, and stress in 14–15-year-old adolescents. Full text in Research Archive
• Rohde, Gudrun E.; Helseth, Sølvi; Mikkelsen, Hilde Elisabeth Timenes; Skarstein, Siv; Småstuen, Milada Cvancarova & Haraldstad, Kristin (2020). HRQOL in adolescence parents. Full text in Research Archive
• Rohde, Gudrun E. (2019). Helse, omsorg og livskvalitet. Full text in Research Archive
• Berg, Kari Ellen; Rohde, Gudrun E.; Pripp, Are Hugo; Prøven, Anne & Haugeberg, Glenn (2019). No changes in sexual quality of life over a 5-years period in patients with axial spondyloarthritis. Quality of Life Research. ISSN 0962-9343. 28, p. S114–S114. Full text in Research Archive
• Rohde, Gudrun E. (2019). Helse, omsorg og livskvalitet. Full text in Research Archive

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