Quality Of Life Research[JOURNAL]
Sun
200 papers
Circadian preference and quality of life in adults with autism spectrum disorder: a Brazilian cross-sectional self-reported survey.
Lima JG, Macedo MTS, de Oliveira F Baldo T … +1 more , Baldo MP
Qual Life Res · 2026 Mar · PMID 41764700 · Full text
PURPOSE: Adults with Autism Spectrum Disorder (ASD) often experience significant challenges that affect their quality of life (QoL), including mental health issues, socioeconomic strain, and circadian rhythm disruptions....
PURPOSE: Adults with Autism Spectrum Disorder (ASD) often experience significant challenges that affect their quality of life (QoL), including mental health issues, socioeconomic strain, and circadian rhythm disruptions. Chronotype, or an individual’s biological preference for sleep-wake patterns, has been associated with well-being in neurotypical populations but remains underexplored in adults with ASD. This study aimed to investigate the association between chronotype and perceived QoL in Brazilian adults with ASD. METHODS: We conducted a cross-sectional, web-based survey as part of the SOLACE-ASD Brasil project. A total of 439 adults (≥ 18 years) with a self-reported diagnosis of ASD completed standardized questionnaires assessing chronotype (Morningness-Eveningness Questionnaire) and QoL (EUROHIS-QOL 8). Sociodemographic, behavioral, and clinical variables were also collected. Associations were examined using multiple linear regression and ANCOVA, adjusting for potential confounders. RESULTS: Intermediate chronotype was the most prevalent (40.1%), followed by evening (38.7%) and morning (21.2%) chronotypes. Overall, 60.4% of participants reported low QoL. Evening-type individuals had significantly lower overall and physical health QoL scores than morning and intermediate types. In multivariate analysis, evening chronotype, unemployment, low income, tobacco use, and physical inactivity were independently associated with lower QoL. CONCLUSION: Chronotype is an independent predictor of QoL in adults with ASD, with evening preference linked to worse outcomes. These findings highlight the importance of considering circadian biology in public health strategies and suggest that chronotype-targeted interventions could improve QoL in this population.
Dual trajectories of capacity management behavior and quality of life in hemodialysis patients: a longitudinal study.
Zhang M, Cai Y, Hou Y … +2 more , Ma B, Chen O
Qual Life Res · 2026 Mar · PMID 41764688 · Publisher ↗
PURPOSE: To examine the individual and dual trajectories of capacity management behavior and quality of life among hemodialysis patients, and to explore factors that may influence these trajectories. METHODS: A longitudi...
PURPOSE: To examine the individual and dual trajectories of capacity management behavior and quality of life among hemodialysis patients, and to explore factors that may influence these trajectories. METHODS: A longitudinal study was conducted involving 310 hemodialysis patients and their caregivers. Of these, 282 dyads completed follow-up assessments at three and six months. Group-based dual-trajectory modeling and logistic regression were used to analyze the trajectories of capacity management behavior and quality of life, as well as their interrelationships and predictive factors. RESULTS: Four trajectories of capacity management behavior, six trajectories of physical quality of life, and two trajectories of mental quality of life were identified among hemodialysis patients. Patients who demonstrated more consistent and stable capacity management behaviors were more likely to maintain a higher quality of life. Early and effective capacity management behaviors appeared to be more beneficial for sustaining quality of life than later improvements. Similarly, patients with a higher quality of life tended to exhibit better and more consistent performance in these behaviors. Predictors across latent trajectory groups included education level, insomnia, and caregiver contributions to self-care. CONCLUSIONS: There was a bidirectional association between dynamic changes in capacity management behaviors and quality of life among hemodialysis patients. It is necessary to develop tailored intervention strategies at an early stage based on their trajectory patterns and predictive factors.
Transcultural translation and adaptation of EuroQol's EQ-5D-5L for Nepal: process description and recommendations for an interpretation guide.
Singh R, Bhattarai K, Gurung D … +5 more , Neupane M, Derrett S, Smit B, Rai S, Kohrt BA
Qual Life Res · 2026 Mar · PMID 41764687 · Publisher ↗
PURPOSE: Ensuring cultural equivalence of measurement tools for comparability across settings, populations, and languages is a challenge for global health research. Development of a guide to interpret the meaning of dime...
PURPOSE: Ensuring cultural equivalence of measurement tools for comparability across settings, populations, and languages is a challenge for global health research. Development of a guide to interpret the meaning of dimensions within tools is an important but neglected part of transcultural translation. Our objective was to transculturally translate the EuroQol Research Foundation’s EQ-5D-5L in Nepali and develop an interpretation guide for Nepal. METHODS: The EQ-5D-5L was translated into Nepali using modified guidelines from the EuroQol Version Management Committee. We conducted forward translations (n = 2), backward translations (n = 3), and cognitive debriefing interviews (n = 26; 13 female; 17–72 years old). RESULTS: Cognitive debriefing demonstrated different understandings of EQ-5D-5L dimensions and severity rankings by age and gender. Younger adults interpreted mobility as exercise, working age adults as movement needed to complete livelihood tasks. Usual activities were interpreted by female respondents as household obligations, and by men as work outside the home. Younger adults interpreted anxiety and depression as occurring due to life dissatisfaction. Older adults described anxiety as occurring due to physical or emotional pain or unfulfilled desires, and depression due to grief. One shortcoming of the tool was its timeline being restricted to the current day. CONCLUSION: Based on these interpretations, a guide was created with indicator meanings according to gender and age. Given the differences in interpretation, cost effectiveness analysis with EQ-5D-5L would benefit from age and gender specific analysis. Ultimately, developing an interpretation guide can facilitate contextualized understandings of transculturally adapted instruments in global health.
Quality of life surveys developed or validated in children or youth with special healthcare needs: a scoping review.
Ames SG, Comeau M, Piper C … +7 more , Houlihan BV, Bjella K, Friedman H, Lomangino S, Taylor IK, Shelton C, Stille CJ
Qual Life Res · 2026 Mar · PMID 41764674 · Publisher ↗
PURPOSE: Current survey measures of quality of life (QoL) may not be sufficient to describe domains that are important to children and youth with special healthcare needs (CYSHCN) and their families. A better understandi...
PURPOSE: Current survey measures of quality of life (QoL) may not be sufficient to describe domains that are important to children and youth with special healthcare needs (CYSHCN) and their families. A better understanding of current QoL surveys for CYSHCN is needed. METHODS: A scoping review of the literature was conducted utilizing the Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines. A comprehensive search strategy was developed and performed across multiple electronic databases (Ovid Medline, Embase, CINAHL, and Web of Science) to identify studies published between 1/1/2000 and 2/27/2023. Two independent reviewers screened abstracts for inclusion, followed by full-text reviews with discrepancies resolved by a third party when necessary. Articles included focused on the development or validation of a measure of QoL in CYSHCN. Data extraction was performed to capture key information. Surveys were obtained when able for item review. RESULTS: Out of an initial 11,212 abstracts screened for inclusion, a final 305 articles were included. These articles represented 47 distinct surveys of QoL. Surveys were developed in a variety of health care conditions and available in multiple languages and forms. Of the 41 surveys available for item review, 61% (n = 25/41) included a domain of physical function as a key component of QoL. CONCLUSION: A scoping review of measures of QoL in CYSHCN identified a large volume of literature incorporating 47 unique surveys. However, few surveys considered CYSHCN directly in their initial development and validation, leading to concerns about the ability of these surveys to accurately assess QoL in CYSHCN.
Comorbidity patterns and health-related quality of life in a cohort of Australian women cancer survivors.
Zhang H, Yu XQ, David M … +7 more , Byles J, Yap ML, Steinberg J, Rutherford C, Banks E, Canfell K, Rahman MM
Qual Life Res · 2026 Mar · PMID 41764673 · Full text
PURPOSE: This study aimed to identify dominant comorbidity patterns among women cancer survivors and examine how these patterns relate to health-related quality of life (HRQL). METHODS: 1544 participants (born 1946–1951)...
PURPOSE: This study aimed to identify dominant comorbidity patterns among women cancer survivors and examine how these patterns relate to health-related quality of life (HRQL). METHODS: 1544 participants (born 1946–1951) from the Australian Longitudinal Study on Women’s Health diagnosed with cancer during the follow-up period from 1993 to 2019 were included. HRQL is measured with Short Form-36 included in the survey. Latent class analysis was applied to identify comorbidity patterns, and linear regression was used to assess their association with HRQL domains, adjusting for demographic factors. RESULTS: Five distinct comorbidity classes were identified: relatively healthy (n = 880, 57%); hypertension and arthritis (n = 278, 18%); arthritis and osteoporosis (n = 139, 9%); respiratory conditions (n = 170, 11%); and complex multimorbidity (n = 93, 6%). Compared to the relatively healthy class, women in all other classes had significantly lower average HRQL (p < 0.01). For example, the classes’ adjusted mean score for general health domain varied: relatively healthy (mean = 70.8, reference), hypertension and arthritis (mean = 63.1, 95% CI = 59.9, 66.3), arthritis and osteoporosis (mean = 60.0, 95% CI = 55.8, 64.1), respiratory conditions (mean = 60.9, 95% CI = 57.2, 64.7), and complex multimorbidity (mean = 48.6, 95% CI = 43.4, 53.8). Women in the complex multimorbidity class had the lowest HRQL across all domains: physical functioning [adjusted mean difference from relatively healthy (AMD=− 22.2 and 95% CI − 27.4, − 17.0)], mental health (AMD=-11.4, 95% CI=− 15.4, -7.5). CONCLUSION: Comorbidity patterns varied substantially among women cancer survivors and were strongly associated with differences in HRQL. Survivors with complex multimorbidity experienced the greatest impairments. Incorporating comorbidity profiling into survivorship care may help identify high-risk groups and support targeted interventions to optimise quality of life.
Biases in the measurement of health-related quality of life in the EQ-5D-5L among those with serious physical traumatic injuries: the ADVANCE cohort study.
Dyball D, Schofield S, Burdett H … +6 more , LeFeuvre P, Bennett AN, Cullinan P, Boos CJ, Bull AMJ, Fear NT
Qual Life Res · 2026 Mar · PMID 41764672 · Full text
PURPOSE: Physical traumatic injuries are likely to impact on a person’s Health-Related Quality of Life (HRQOL). We present data on HRQOL, from which EQ-5D-5L index scores are derived, and overall perceived health in UK A...
PURPOSE: Physical traumatic injuries are likely to impact on a person’s Health-Related Quality of Life (HRQOL). We present data on HRQOL, from which EQ-5D-5L index scores are derived, and overall perceived health in UK Armed Forces personnel who sustained serious physical combat injuries and compare them to demographically similar personnel without such injuries (uninjured group). To ensure that perception of HRQOL is similar between groups, we also assess for measurement bias through Differential Item Functioning (DIF). METHODS: 577 personnel in an injured group (including subgroups of limb amputation injuries (n = 160) and non-amputation injuries (n = 417)) and 564 personnel in the uninjured group who sustained no such injuries were assessed in the ADVANCE cohort study. Health index values were derived from the EQ-5D-5L, overall perceived health from the EQ-visual analogue scale, and mobility from a Six-Minute Walk Test (6MWT). DIF was identified using multiple indicator multiple causes modelling. RESULTS: Compared to the uninjured group, personnel injured with associated limb loss had significantly higher likelihood of reporting low health index scores (Relative Risk Ratio (RRR) 7.18 (95% Confidence Interval (CI) 4.25, 12.29; relative to high health index scores)), however no difference in the probability of reporting low or moderate overall perceived health, relative to high, was observed. Those injured without limb loss had a significantly higher probability of reporting low health index values (RRR 3.58 (95%CI 2.57, 5.03)) and low overall perceived health (RRR 1.91 (95%CI 1.34, 2.66)). Measurement bias was observed in items regarding mobility and anxiety/depression for those injured with associated limb loss and self-care for those with injured without. Differences in 6MWT only partially explained the bias observed in the mobility item. CONCLUSION: Personnel who experience serious traumatic injuries perceive aspects of HRQOL differently to personnel who experience no such injuries, with heterogenous biases expressed depending on presence of limb amputation. Researchers evaluating HRQOL in health interventions may need to account for this bias if comparing individuals with different traumatic injuries/conditions.
Understanding the burden of congenital cytomegalovirus (cCMV) infection: concept elicitation interviews with caregivers of pediatric cCMV patients and development of a conceptual disease model.
Currie BM, Van Kriekinge G, Pimienta A … +4 more , Saucier CD, Jacobs KD, Waldman LT, Salvatore CM
Qual Life Res · 2026 Mar · PMID 41764671 · Full text
PURPOSE: Congenital cytomegalovirus (cCMV) is the most common congenital infection worldwide. cCMV can result in long-term impairments such as hearing loss and developmental delay. The study objective was to understand t...
PURPOSE: Congenital cytomegalovirus (cCMV) is the most common congenital infection worldwide. cCMV can result in long-term impairments such as hearing loss and developmental delay. The study objective was to understand the caregiver experience of cCMV and caregiver-reported perceptions of the experience for cCMV patients. METHODS: This non-interventional, cross-sectional study interviewed 25 caregivers of patients (aged 4 months to 17 years) with confirmed cCMV in the United States. Semi-structured qualitative interviewing methods were used to elicit descriptions of cCMV symptoms and their impact on the patient as perceived by the caregiver. Separate questions assessed the caregiver burden of a patient with cCMV. Transcripts were analyzed using an iterative coding process to identify key concepts. RESULTS: All caregivers reported increased healthcare needs for their child with cCMV. Other caregiver-reported patient impacts spanned multiple domains including emotional, physical and social functioning, education and communication. For example, a child with cCMV-related communication/hearing difficulties experiencing sadness or social isolation, or with cCMV-related seizures resulting in worry or apprehension. The caregiver impacts of caring for a child with cCMV also covered multiple domains including emotional, role and social functioning, work, sleep, and family planning. Emotional functioning was considered the greatest impact by approximately half of caregivers. CONCLUSION: These results advance understanding of experiences related to cCMV for caregivers and caregiver-reported perceptions of the patient experience. This may help healthcare professionals improve routine clinical practice for families affected by cCMV. The results and conceptual model may also support the development of a disease-specific clinical outcome assessment tool.
The minimal clinically important difference for the patient activation measure in a culturally and linguistically diverse cohort with chronic conditions.
Boland R, Descallar J, Naylor JM … +2 more , Williams G, Brady B
Qual Life Res · 2026 Mar · PMID 41764669 · Full text
PURPOSE: To estimate the Minimally Clinically Important Difference (MCID) for the Patient Activation Measure (PAM) in a culturally diverse sample of people with chronic disease. METHODS: This study was embedded in a larg...
PURPOSE: To estimate the Minimally Clinically Important Difference (MCID) for the Patient Activation Measure (PAM) in a culturally diverse sample of people with chronic disease. METHODS: This study was embedded in a larger cluster randomised trial exploring chronic disease management interventions in a culturally diverse sample of 254 adults. Patients were consecutively recruited across 16 outpatient clinics in Sydney, Australia and completed a range of outcomes related to the trial, including the Patient Activation Measure at recruitment and 6 months later. For the current study, the MCID for the PAM was estimated using two distribution methods and four anchor-based methods: mean change difference, and from the receiver operating characteristic curve, the Euclidean and Farra methods, and the Youden Index. A modified self-reported global impression of change, aligned to key elements of the PAM, was used as the external criterion and scores were dichotomised into ‘improved’ and ‘not improved.’ Therefore, the results are likely to overestimate the MCID. RESULTS: 228 participants completed pre- and post-assessments; 51% in the improved group and 49% in the not improved group. Anchor-based methods produced MCIDs between 4 and 7.9, with a value of 4.7 from the preferred Youden method. Distribution-based methods produced MCIDs ranging from 0.26 (standardised effect size) to 5.88 PAM points. CONCLUSION: Different methods of calculating the PAM for MCID provided different results. Using the preferred Youden Index method, an MCID of 4.7 PAM points was identified as clinically meaningful in this culturally diverse chronic disease cohort. Wider estimates from other anchor-based methods (4.0 to 7.9) are reported to illustrate methodological variability. TRIAL REGISTRATION: Study data were collected during a two-phase hybrid cluster randomised controlled trial, approved by the South Western Sydney Local Health District Human Research Ethics Committee (2021/ETH12279) and registered prospectively on the Australian and New Zealand Clinical Trials Registry (ACTRN12622000697785).
Assessing the assessment: a scoping review of the mode of patient-reported outcome assessment in solid cancer clinical trials.
Hubel N, Krepper D, van der Weijst L … +13 more , Machingura A, Seidl C, Vorbach SM, Veil M, Giesinger JM, Sztankay M, Kern S, Fitzsimmons D, Kuliś D, Pe M, Holzner B, Lehmann J, EORTC Quality of Life Group
Qual Life Res · 2026 Mar · PMID 41764668 · Full text
PURPOSE: Transparent reporting of how patient-reported outcomes (PROs) are collected is essential to ensure reproducible and interpretable data. Different modes of assessment may affect data quality and feasibility, yet...
PURPOSE: Transparent reporting of how patient-reported outcomes (PROs) are collected is essential to ensure reproducible and interpretable data. Different modes of assessment may affect data quality and feasibility, yet their use in cancer trials is poorly described. Electronic PRO (ePRO) assessment may improve data quality and enable active review, but it is unclear how often different modes of assessment like ePRO assessment are used and in which trials. METHODS: We systematically searched PubMed for randomized controlled trials (published 2019-2023) that used cancer-specific PRO measures in patients with the six most common solid cancers. Trial characteristics, PRO reporting practices, and evidence of active review of PRO data were summarized descriptively. Univariate logistic regression was used to examine predictors of (1) reporting the mode of PRO assessment and (2) use of ePROs exclusively. RESULTS: Of 9331 references screened, 296 trials were included in the analysis. 135 (45.6%) reported the mode of PRO assessment: paper (51.9%), ePRO (20.7%), mixed modes (24.4%). Trials were more likely to report the mode of assessment if they were industry-sponsored (OR = 2.00, 95%, p = .005), or had larger sample sizes (OR = 1.11, 95%, p < .001). ePRO assessment exclusively was used more in recently registered trials (OR = 1.41, p < .001) and in industry-sponsored trials (OR = 8.38, p < .001). Active, in-stream review of PRO results was reported in 2.0% of trials. CONCLUSION: Despite clear guidelines, reporting of the mode of PRO assessment remains inadequate, and active review of PRO data is uncommon. Strengthening transparency and using PROs more actively within trials could enhance patient-centered cancer research.
Real-world evaluation of health-related quality of life in hematology patients treated with rituximab: results of a multicentric cross-sectional cohort study.
Urru SAM, Mayer F, Spila Alegiani S … +13 more , Paoloni F, Guella A, Murru R, Bucaneve G, Formoso G, Racanelli V, Forti A, Fozza C, Longo G, Fulgenzio C, Musicco F, Campomori A, SURE Working Group
Qual Life Res · 2026 Mar · PMID 41764665 · Publisher ↗
BACKGROUND: Advancements in treating hematologic malignancies have improved survival, but health-related quality of life (HRQoL) remains a key concern due to the physical, emotional, and social impact of disease and trea...
BACKGROUND: Advancements in treating hematologic malignancies have improved survival, but health-related quality of life (HRQoL) remains a key concern due to the physical, emotional, and social impact of disease and treatment. AIMS: This study aimed to assess HRQoL in patients undergoing treatment for hematologic malignancies, identifying the most affected domains to guide supportive interventions. METHODS: HRQoL was evaluated using the 42-item Functional Assessment of Cancer Therapy-Lymphoma (FACT-Lym) in a prospective, multicenter observational study on rituximab safety across Italian hematology units (March 2018-June 2022). RESULTS: Of 772 patients with Non-Hodgkin Lymphoma (NHL) or Chronic Lymphocytic Leukemia (CLL), 412 (62.6%) completed the HRQoL assessment. Overall, patients reported acceptable quality of life. Key concerns included reduced enjoyment of life (45.1%), poor sleep (42.0%), and dissatisfaction with quality of life (41.0%). Functional impairments and emotional distress were also reported. CLL patients showed slightly better physical and lymphoma-specific well-being than NHL patients. Patients with other hematologic diseases had lower scores across several domains. CONCLUSIONS: While HRQoL is generally acceptable in NHL and CLL, functional well-being is most impacted. Routine integration of HRQoL assessments is essential to identify unmet needs and support patient-centered care.
Correction: Validity of EQ-5D-5L breathing and cognition bolt-ons in non-hospitalized patients after COVID-19.
Stavem K, Garratt AM
Qual Life Res · 2026 Feb · PMID 41739310 · Full text
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Correction: Exploring the lived experiences of women with metastatic breast cancer and their HRQoL questionnaire preferences: a qualitative study.
Tolstrup L, Vogsen M, Hildebrandt MG … +3 more , Sørensen RW, Maguire R, Dieperink KB
Qual Life Res · 2026 Feb · PMID 41739269 · Full text
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Balancing ideals and realities: health care professionals' perspectives of and attitudes toward digital patient-centered cancer care.
Lundereng ED, Brkic A, Absolom K … +19 more , Andvik E, Beernaert K, Cresswell K, Dajani OF, De Glas N, Fallon M, Freitas-Durks V, Guldhav KV, Hjermstad MJ, Kaasa S, Kurita GP, Lund JÅ, Mitrea N, Damink SO, Paulsen Ø, Pedersen GM, Skåre TS, Lundeby T, The MyPath consortium
Qual Life Res · 2026 Feb · PMID 41709015 · Full text
PURPOSE: Patient-centered care (PCC) improves quality of life, symptom management and healthcare outcomes in oncology. However, integration into routine cancer care remains limited. Digital solutions using patient-report...
PURPOSE: Patient-centered care (PCC) improves quality of life, symptom management and healthcare outcomes in oncology. However, integration into routine cancer care remains limited. Digital solutions using patient-reported outcome measures (PROMs) offer a potential mechanism to operationalize PCC. This study explored healthcare professionals' (HCPs) pre-implementation perspectives on using digital PROMs to support PCC in Norwegian oncology outpatient clinics, informing the design and implementation strategies of the European MyPath digital solution. METHODS: Semi-structured interviews (n = 29) and three focus groups (n = 16) were conducted with varied HCPs across four Norwegian hospitals. Interviews explored perceptions of PCC, experiences with PROMs, and requirements for digital implementation. Data were analyzed using thematic analysis, combining inductive and deductive coding guided by the TPOM framework. RESULTS: Four themes emerged: (1) balancing PCC with disease-centered practices, (2) integrating PCC into daily routines, (3) customization and patient acceptance of digital tools, and (4) combining patient-reported data with clinical autonomy. HCPs viewed digital PROMs as promising for facilitating PCC but emphasized that successful implementation requires workflow alignment, adaptable digital solutions, and strong stakeholder engagement. Concerns included patient digital literacy, workload implications, and overreliance on PROMs at the expense of direct patient interaction. CONCLUSION: Our findings highlight a tension between HCPs' needs for technical functionality and workflow alignment, and the support required to adapt their practice to fully realize PCC through digital tools. Integrating PCC successfully requires organizational, cultural, and workflow adaptations, alongside active HCP engagement in design and implementation. These changes are essential to reposition PCC as an integral rather than competing component of high-quality cancer care.
The association among psychological factors, pain severity and quality of life in people living beyond adolescent and young adult cancer: a systematic review and meta-analysis.
Yang M, Smeets L, Ahmed I … +4 more , Rheel E, Ickmans K, Pleysier S, Roose E
Qual Life Res · 2026 Feb · PMID 41706339 · Publisher ↗
PURPOSE: This systematic review and meta-analysis examined associations among psychological factors, pain severity, and quality of life (QoL) in people living beyond adolescent and young adult (AYA) cancer. METHODS: Four...
PURPOSE: This systematic review and meta-analysis examined associations among psychological factors, pain severity, and quality of life (QoL) in people living beyond adolescent and young adult (AYA) cancer. METHODS: Four databases were searched from inception till November 16th, 2024. This review was registered on the International Prospective Register of Systematic Reviews database (PROSPERO) (No. CRD42024613478). Meta-analysis estimated effect sizes as Pearson correlation coefficients (r) by using a random-effects model. Certainty of evidence was assessed using the GRADE approach. RESULTS: Seventeen articles (13,446 participants) were included. A multilevel meta-analysis of 12 studies (11,962 participants) found that adverse psychological factors may be associated with poorer QoL overall (r = − 0.31; 95% CI: − 0.40 to − 0.22, very low certainty). Adverse psychological factors including worse perceived vulnerability, mental health, anger, cancer-related impact, life satisfaction, body image, depressive symptoms, anxiety, and distress may be associated with overall poorer QoL. Both worse psychological well-being and worse body image may have associations with worse global QoL. Worse mental health, cancer-related impact, life satisfaction, anger, depressive symptoms, anxiety, body image, and psychological well-being may be associated with poorer social functioning. Worse mental health, anger, and body image may be associated with poorer physical functioning. Worse body image and distress may be related to poorer emotional functioning. Worse anger, depressive symptoms, and body image may be associated with worse pain interference. Worse body image may also be associated with poorer role and cognitive functioning. Evidence was insufficient to pool results on pain severity. CONCLUSION: Adverse psychological factors are associated with poorer overall QoL and QoL dimensions in people living beyond AYA cancer. AYA-tailored therapies can be developed based on these findings to enhance healthcare for this unique group of oncology patients. More research is needed to clarify the association among specific psychological factors, pain severity, and multidimensional aspects of QoL.
Needs and health-related quality of life domains relevant to people in Europe with advanced cancer in need of palliative care: a systematic review of qualitative research.
Lizano-Barrantes C, Amat-Fernandez C, Garin O … +21 more , Luer-Aguila R, Pardo Y, Rojas-Concha L, Thong MSY, Apolone G, Brunelli C, Caraceni A, Couespel N, Bos N, Groenvold M, Kaasa S, Ciliberto G, Lombardo C, Pietrobon R, Pravettoni G, Sirven A, Vachon H, Gilbert A, Velikova G, Ferrer M, EUonQoL Working Group
Qual Life Res · 2026 Feb · PMID 41706236 · Full text
PURPOSE: There is a need for a comprehensive summary of qualitative research on the health-related quality of life (HRQoL) of people with advanced cancer requiring palliative care. We aim to systematically review qualita...
PURPOSE: There is a need for a comprehensive summary of qualitative research on the health-related quality of life (HRQoL) of people with advanced cancer requiring palliative care. We aim to systematically review qualitative studies on outcomes, needs, experiences, preferences, concerns and HRQoL of people in Europe with advanced cancer requiring palliative care over the last decade. METHODS: Protocol registered ( www.crd.york.ac.uk/PROSPERO , CRD42024575065). The search was conducted in PubMed and Scopus, from 2013 onward. INCLUSION CRITERIA: qualitative studies addressing constructs related to the HRQoL of adults with cancer requiring palliative care in Europe. Abstracts and full texts were reviewed, data extracted, and risk of bias assessed independently by two researchers. A thematic analysis stratified by study objective was performed, grouping the emerging themes into categories (primary outcome). RESULTS: Of 18,256 articles identified, 20 fulfilled the inclusion criteria: 10 studies with a generic objective (whole palliative process or end-of-life phase), and 10 with specific focuses. Five categories (35 themes) emerged from the studies with generic focuses: 'Psychological Function' (n = 15), 'Clinical Management' (n = 8), 'Symptoms and Physical Function' (n = 6), 'Social Function' (n = 5), and 'End-of-life' (n = 1). Themes from the 7 studies focusing on treatment, services, and self-management also fitted into these categories, adding 'Spiritual Well-being'. CONCLUSION: These findings emphasise the predominance of the psychological function domain in cancer patients requiring palliative care, including cancer-related anxiety and distress, coping mechanisms, control and decision-making, and fearing and expecting death. Additionally, clinical management unmet needs were identified in health care, information and communication, and end-of-life settings (home vs. hospital).
Muscle quality during cancer treatment and associations with health-related quality of life.
Rodrigues JL, O'Connell NS, Sutton AL … +7 more , Ruddy KJ, Weaver KE, Lesser GJ, Ky B, D'Agostino RB, Hundley WG, Bellissimo MP
Qual Life Res · 2026 Feb · PMID 41678067 · Full text
PURPOSE: Breast cancer (BC) survivors report declines in health-related quality of life (HRQoL), including worsening physical function and fatigue levels. It is uncertain if these changes are associated with muscle quali...
PURPOSE: Breast cancer (BC) survivors report declines in health-related quality of life (HRQoL), including worsening physical function and fatigue levels. It is uncertain if these changes are associated with muscle quality. This study estimated changes in muscle quality and HRQoL in BC participants over 24 months of treatment and tested associations with muscle quality and HRQoL. METHODS: Women (n = 149, 50.3 ± 10.7 years) diagnosed with stage I-III BC (PREVENT-WF-98213) reported HRQoL via Patient-Reported Outcomes Measurement Information System (PROMIS) surveys at baseline prior to cancer treatment and at 6-months and 24-months follow up from treatment initiation. Paraspinal intermuscular fat (IMF) and skeletal muscle (SM) were determined by magnetic resonance imaging, and the IMF:SM ratio was calculated to estimate muscle quality. Analyses included linear mixed-effects models adjusting for study group (placebo/statin), age, race, and body mass index. RESULTS: HRQoL declined from baseline to 6-months but returned to baseline levels by 24-months. Muscle quality worsened from baseline through 24-months manifested by an increase in IMF. Individuals with better muscle quality at baseline reported declines in HRQoL from baseline to 6-months (mean difference [MD] = - 0.12 ± 0.03, p < 0.001), whereas participants with poor baseline muscle quality did not (MD = - 0.06 ± 0.003, p = 0.14). An increase in IMF:SM over 24-months trended towards worse physical function (- 8.76 ± 5.79, p = 0.132). CONCLUSION: Muscle quality worsened over 24-months and trended toward worse physical function at 24-months follow-up. From initial declines during treatment, participants reported recovered HRQoL by 24-months. Further work in a larger cohort is needed to confirm associations with muscle quality and physical function.
Weighted predictive modelling estimation of patient acceptable symptom state for forgotten joint score, Oxford hip score, and EuroQol health index 3 and 12 months after total hip arthroplasty in a United Kingdom cohort.
Abugu GU, Holloway N, Riches P … +3 more , Clarke J, Giardini ME, Chopra S
Qual Life Res · 2026 Feb · PMID 41677987 · Full text
PURPOSE: Patient acceptable symptom state (PASS) enhances interpretation of patient-reported outcome measures (PROMs). However, very few studies have defined PASS values for widely used PROMs and are based on methods sen...
PURPOSE: Patient acceptable symptom state (PASS) enhances interpretation of patient-reported outcome measures (PROMs). However, very few studies have defined PASS values for widely used PROMs and are based on methods sensitive to distribution of PROM scores or weak correlation. This study utilises a new anchor-based method to estimate PASS thresholds for Forgotten Joint Score (FJS), Oxford Hip Score (OHS) and EuroQol health index (EQ-5D-5L) at 3 and 12 months after primary total hip arthroplasty (PTHA). METHODS: This retrospective cohort study used data for PTHAs performed at a high-volume arthroplasty centre in Scotland between April 2021 and March 2023. PROMs were FJS, OHS and EQ-5D-5L. A new weighted predictive modelling method was used to define PASS values. Anchor questions used were surgery-specific satisfaction for the FJS and OHS, and EQ-Visual Analogue Scale for the EQ-5D-5L. RESULTS: A total of 2793 PTHAs were performed, of which 65 to 73% had complete PROMs data. Respective median age and BMI were 69 years and 29.1 kg/m² and 57% were female. The Spearman correlations between anchors and PROMs ranged between 0.35 and 0.54. PASS thresholds (95% CI) at 3 and 12 months respectively were 31.5 (29.5–33.9) and 38.3 (36.5–42.4) for FJS, 31.5 (29.1–32.8) and 36.2 (35.1–36.8) for OHS, 0.814 (0.795–0.822) and 0.867 (0.845–0.875) for EQ-5D-5L. CONCLUSION: We report new PASS thresholds for FJS, OHS and EQ-5D-5L 3 and 12 months following PTHA. These thresholds reflect the symptom (health) state at which an average Scottish patient considers their outcome acceptable.
Quality of life in oncology drug approvals: evidence from Swiss decisions in relation to global regulatory trends.
Horst A, Löffler-Perez N, Rohr UP … +1 more , Wac K
Qual Life Res · 2026 Feb · PMID 41677984 · Full text
BACKGROUND: In oncology, health-related quality of life (HRQoL) is along with overall survival a decisive clinical element in regulatory and clinical decision-making. Consequently, health authorities are increasingly int...
BACKGROUND: In oncology, health-related quality of life (HRQoL) is along with overall survival a decisive clinical element in regulatory and clinical decision-making. Consequently, health authorities are increasingly interested in HRQoL data when evaluating new cancer treatments, as it promises to better capture patient-relevant outcomes. Although strongly encouraged by regulatory agencies such as the FDA, EMA and Swissmedic, the inclusion of HRQoL data in regulatory submissions by pharmaceutical companies remains sparse due to variability in data quality, reporting standards, methodological rigor, and operational constraints. METHODS: We retrospectively analysed 342 Swissmedic-approved oncology applications (2001-2020) to assess the volume, role, and trends of HRQoL data. For each application, we recorded HRQoL inclusion, domains based on the WHO framework, measurement instruments, and differences across document types and application categories. RESULTS: HRQoL data appeared in 216 of 342 reports (63.2%). Inclusion was higher for new active substances (69.4%) than indication extensions (59.6%). Physical health dominated (87.1% of applications), while psychological (20.2%), social (1.8%), and environmental (6.7%) domains were rarely reported. Of 216 applications including HRQoL, only 62 (28.7%) suggested a benefit, 8 (3.7%) demonstrated a clinically meaningful improvement, and just 2 (0.9%) were reflected in product labels. CONCLUSIONS: Although HRQoL reporting in Swiss oncology submissions is increasing, it is still mostly limited to physical health. Our findings suggest underreporting of more universal HRQoL domains and limited regulatory utility mostly due to incomplete information and underuse of HRQoL integration in the statistical analysis plan by pharmaceutical companies, issues that align with challenges documented across international agencies.
Health-related quality of life among adults with chronic diseases: a linked, retrospective cohort study using the EQ-5D-5L in Queensland, Australia.
Endo T, Clemens SL
Qual Life Res · 2026 Feb · PMID 41677969 · Full text
PURPOSE: People with chronic diseases are known to have lower EQ-5D-5L utility scores, but data are not readily available in an Australian context. Using linked administrative hospital and population survey data, we aime...
PURPOSE: People with chronic diseases are known to have lower EQ-5D-5L utility scores, but data are not readily available in an Australian context. Using linked administrative hospital and population survey data, we aimed to calculate utility scores for adults with different disease profiles. METHODS: We conducted a retrospective cohort study using a cross-sectional population-level health survey (2022–2023) linked to administrative hospital data for adults 18 years and older in Queensland, Australia to assess: (1) chronic disease and comorbidity prevalence, (2) Health-related quality of life (HRQoL) differences among adults with pre-existing chronic conditions, and (3) to model differences in disutility days by chronic diseases. RESULTS: The mean EQ-5D-5L utility score for the cohort was 0.917, but was lower among those with chronic diseases, for example chronic obstructive pulmonary disease (COPD), coronary heart disease (CHD) and diabetes had corresponding mean values of 0.780, 0.850 and 0.832, respectively. After adjustment, on average the disutility days that could be averted by preventing chronic diseases equalled approximately a month annually for some conditions, ranging from 14.8 days for CHD to 36.5 days for COPD. Prevalence estimates using linked administrative hospital data were comparable to results from the National Health Survey, which used self-report, although comorbidity was found to be substantially higher in the current study. CONCLUSION: People living with chronic diseases have substantially higher number of disutility days annually. Preventing or delaying onset of chronic conditions would likely improve HRQoL and positively impact individuals, society and the economy.
Making sense of PROM outcomes: a mixed method study to optimize graphical visualization formats for children.
Limmen S, van Muilekom MM, Korteling DL … +6 more , Teela L, Boers M, Terwee CB, van Oers HA, Haverman L, Luijten MAJ
Qual Life Res · 2026 Feb · PMID 41677968 · Full text
OBJECTIVE: Graphs are often used to increase patient understanding of Patient Reported Outcome Measure (PROM) scores. We aimed to investigate which graph visualization options are best interpreted by children. METHODS: W...
OBJECTIVE: Graphs are often used to increase patient understanding of Patient Reported Outcome Measure (PROM) scores. We aimed to investigate which graph visualization options are best interpreted by children. METHODS: We conducted a quantitative study to assess children’s interpretation accuracy and perceived clarity of different PROM visualizations graphs through a test, and a qualitative study using ‘think aloud’ interviews about the same visualizations to explore how different visual elements were used for interpretation. Participants included (1) children from the Dutch general population (quantitative) and (2) children (8-18y) treated at Emma Children’s Hospital (quantitative and qualitative).We created sample graphs (e.g. bar, line) based on literature, varied graphical elements (e.g. addition of numerical information yes/no), and presented them in randomized order. Logistic and linear mixed models analyzed interpretation accuracy and clarity ratings. We analyzed interviews with a deductive approach. RESULTS: We included 558 children in the quantitative study (1: 546, 2: 12), and 14 in the interviews. Foundational elements like clear labeling were found beneficial. ‘Heatmap’ and ‘color’ as indicators of concerning scores had higher interpretation accuracy and clarity, and SD-lines lower. Bar graphs had slightly higher accuracy. Radar graphs scored significantly worse on interpretation accuracy and clarity compared to all other graphs. Interviews revealed a preference for single domain graphs with color-coding indicating concerning scores. CONCLUSION: We recommend using bar graphs incorporating heatmaps or color as concerning score indicators in clinical encounters with children. Application of our results will likely facilitate patient engagement in consultations and potentially improve patient-centered care.
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