Quality Of Life Research[JOURNAL]
Sun
200 papers
Predicting health-related quality of life two years post-diagnosis across seven cancer types: using machine learning to identify vulnerable patients.
Oudijk WF, de Rooij BH, van Benthem KJ … +9 more , Etienne RS, Oerlemans S, Verkooijen HM, Aben KKH, Vink GR, May AM, Mols F, Katsimpokis D, Ezendam NPM
Qual Life Res · 2026 Feb · PMID 41677945 · Full text
PURPOSE: Cancer survivors often experience long-term consequences affecting their Health-Related Quality of Life (HRQoL). Sociodemographic factors, clinical characteristics, and health-related behaviours influence HRQoL,...
PURPOSE: Cancer survivors often experience long-term consequences affecting their Health-Related Quality of Life (HRQoL). Sociodemographic factors, clinical characteristics, and health-related behaviours influence HRQoL, making some individuals vulnerable to adverse HRQoL. This study develops linear regression and machine learning models to predict HRQoL two-year post-diagnosis and to identify key vulnerability factors. METHODS: This longitudinal study included data of survivors of seven cancer types. Nineteen predictor variables were derived from questionnaires completed within three months post-diagnosis (baseline) from the Netherlands Cancer Registry. Linear regression, random forest, XGBoost, neural network, and Support Vector Machine (SVM) regressors were employed to predict the EORTC QLQ-C30 summary score 1.5-2.5 years post-diagnosis. Permutation testing assessed vulnerability factors. RESULTS: The analyses included 4,538 individuals. All models achieved similar R (0.3) and RMSE (9) scores. Linear regression, random forest, XGBoost, and SVM models identified lower physical, cognitive, and emotional functioning at diagnosis, along with more comorbidities, cancer type (especially endometrial), and higher BMI as the top vulnerability factors. Treatment, age, and education were not associated with vulnerability. All models tended to overestimate low HRQoL which might be due to the limited number of observations with low HRQoL values. CONCLUSIONS: The predictors used in this analysis explained only 30% of the variation in long-term HRQoL. Similar to previous studies predicting HRQoL in cancer, these predictors miss crucial information. Baseline functioning, comorbidities, cancer type and BMI appeared to be the key vulnerability factors. Future studies should prioritize accurate prediction of low HRQoL scores.
Qualitative testing of the EQ-HWB-9 with a 'blank' EQ-HWB VAS and EQ-5D-5L with skin bolt-ons in a rare genetic skin disease population.
Metyovinyi Z, Plázár D, Becker K … +2 more , Medvecz M, Rencz F
Qual Life Res · 2026 Feb · PMID 41677942 · Full text
PURPOSE: Epidermal differentiation disorders (EDDs) are rare genetic skin disorders that significantly impact patients’ health and wellbeing. This study assessed the content validity of two experimental EuroQol instrumen...
PURPOSE: Epidermal differentiation disorders (EDDs) are rare genetic skin disorders that significantly impact patients’ health and wellbeing. This study assessed the content validity of two experimental EuroQol instruments (EQ-5D-5Lbolt-ons and EQ-HWB-9) and explored potential endpoint options for a visual analogue scale (VAS) for EQ-HWB-9 in this population. METHODS: Semi-structured interviews were conducted with 20 adult patients with EDDs at a university dermatology clinic (2024–2025). Participants completed the EQ-5D-5L with skin irritation and self-confidence bolt-ons and EQ-HWB-9 using a think-aloud protocol. Probing questions explored item relevance, missing concepts, and comprehensibility. An EQ-HWB VAS with endpoints blanked out was also presented for feedback. RESULTS: Participants found both instruments generally comprehensive, understandable, and relevant for EDD. The EQ-5D-5L with bolt-ons was considered suitable for measuring health- and disease-related aspects (e.g., skin irritation bolt-on was the most relevant item for all but one patients), while the EQ-HWB-9 was seen as relevant to measure broader life impacts. Three participants suggested combining the EQ-HWB-9 loneliness item with others, and three participants recommended splitting the sadness/depression item. One participant noted missing social/romantic relationship items in both instruments. Overall, 32 different concepts were proposed as EQ-HWB VAS endpoint labels, including both health-related and broader wellbeing concepts, such as overall feeling, mood, quality of life, and harmony. CONCLUSION: Both the EQ-5D-5L with bolt-ons and EQ-HWB-9 demonstrated acceptable content validity in this genetic disease population. Our findings provide useful input for finalizing these experimental instruments and offer the first exploratory qualitative results about potential endpoints for an EQ-HWB VAS.
Quality of life, anxiety and cancer worry following hereditary cancer testing: a 6-month Swedish follow-up study.
Heyman Y, Röjlar H, Hawranek C … +2 more , Numan Hellquist B, Rosén A
Qual Life Res · 2026 Feb · PMID 41677932 · Full text
PURPOSE: As genetic testing becomes increasingly integrated into routine care, understanding its impact on psychological well-being and health-related quality of life (HRQoL) is essential. This study assessed HRQoL, anxi...
PURPOSE: As genetic testing becomes increasingly integrated into routine care, understanding its impact on psychological well-being and health-related quality of life (HRQoL) is essential. This study assessed HRQoL, anxiety and cancer worry following hereditary cancer testing in a Swedish clinical setting and identified predictors of these outcomes. METHODS: Participants were recruited from four outpatient cancer genetics clinics across Sweden. Eligible individuals either carried a pathogenic variant or met clinical criteria for familial breast or colorectal cancer. Questionnaires were completed shortly after receiving test results and again 6 months later. HRQoL was measured using the RAND-36, anxiety using the State-Trait Anxiety Inventory and cancer worry using the Cancer Worry Scale. Outcomes were compared with age- and sex-adjusted Swedish population data. Predictors of outcomes were analysed using multivariable linear regression. RESULTS: A total of 254 participants completed at least one questionnaire. HRQoL improved across all domains over 6 months, while anxiety and cancer worry declined. Participants without a recent cancer diagnosis had scores close to population norms at both time points. Those diagnosed within the previous year had lower HRQoL and higher anxiety and cancer worry, although they improved over time. Poorer outcomes were linked to a recent cancer diagnosis, being an index case, female sex and younger age, while education level and the test result itself were not associated with worse results. CONCLUSION: Genetic testing was not associated with substantial short- or medium-term negative effects on HRQoL, anxiety or cancer worry. Individual risk factors should be considered when offering psychosocial support. Genetic testing is becoming more widely used, but earlier research on how testing affects everyday life often involved small groups or older data. Testing is also used in new ways today, which creates a need for updated studies to understand people’s experiences and to see who might need extra support. In this study, we examined quality of life, anxiety and cancer-related worry in people tested for hereditary breast, ovarian or colorectal cancer. They completed questionnaires shortly after receiving their results and again 6 months later. We compared their answers with those from the general Swedish population. Quality of life improved over time, and anxiety and cancer worry decreased. People without a recent cancer diagnosis had scores similar to population norms. Those with a recent diagnosis had lower scores but also improved. Younger people, women and those recently diagnosed with cancer reported more anxiety and worry and lower quality of life scores. Education level and the test result itself did not affect these outcomes. Overall, genetic testing did not appear to cause lasting negative effects. Support may be most helpful for people with these risk factors.
Psychometric properties comparison of EQ-5D-Y-3L and CHU9D in children and adolescents across different BMI classifications in Jiangsu, China.
Liang J, Dong H, Yang J … +6 more , Xu X, Wu Q, Gu M, Yi H, Liu L, You H
Qual Life Res · 2026 Feb · PMID 41653378 · Publisher ↗
BACKGROUND: This study aims to assess and compare the psychometric properties of EQ-5D-Y-3L and CHU9D in children and adolescents across different BMI classifications in Jiangsu, China. And to identify the more appropria...
BACKGROUND: This study aims to assess and compare the psychometric properties of EQ-5D-Y-3L and CHU9D in children and adolescents across different BMI classifications in Jiangsu, China. And to identify the more appropriate tool for BMI-related health related quality of life (HRQoL) assessment. METHODS: A multi-stage stratified random sampling approach was employed among children and adolescents aged 9 to 17 in Jiangsu Province. The feasibility, construct validity (including convergent, discriminant, and known-group validity) and ability to detect changes of these instruments were evaluated. Random forest models and restricted cubic spline analyses were utilized to examine factors associated with HRQoL. RESULTS: A survey of 37,574 participants (mean age: 13.53 years; 51.6% males) yielded complete data. The EQ-5D-Y-3L showed a higher ceiling effect (70.0%) than CHU9D (42.2%). Utility values for both instruments were highly correlated (r = 0.64), and the intraclass correlation coefficient (ICC) between the two utility values was 0.637. Moderate-to-high correlations were found in conceptually similar dimensions (r = 0.41–0.58, p < 0.001). Significant differences were observed in the two utility values and EQ-VAS across different BMI classifications (p < 0.001), with the CHU9D utility values and EQ-VAS demonstrating higher relative efficiency (RE > 1) and effect sizes (0.038–0.218) compared to EQ-5D-Y-3L utility values (0.044–0.104). Age, gender, BMI, boarding at school, and parents’ education were significantly related to HRQoL (p < 0.05). CONCLUSIONS: Both EQ-5D-Y-3L and CHU9D show acceptable psychometric properties in Chinese children and adolescents, while utility values are not interchangeable. The CHU9D is recommended due to its superior ability to detecting changes and lower ceiling effect. Further study on the psychometric properties of EQ-VAS is needed.
Is EQ-5D-5L sensitive enough to detect treatment-related changes in health status of prostate cancer patients? A nationwide Norwegian longitudinal study from the prostate cancer registry.
Iversen MM, Kirkeleit J, Norekvål TM … +4 more , Oterhals K, Gjelsvik Y, Johannesen TB, Breivik K
Qual Life Res · 2026 Feb · PMID 41636918 · Full text
PURPOSE: To examine the generic European Quality of Life 5-Dimensions questionnaire (EQ-5D-5L) responsiveness to change in health status of patients with invasive prostate cancer (PCa) from pre- to post-treatment and com...
PURPOSE: To examine the generic European Quality of Life 5-Dimensions questionnaire (EQ-5D-5L) responsiveness to change in health status of patients with invasive prostate cancer (PCa) from pre- to post-treatment and compare these results with the responsiveness of disease-specific instruments assumed to be particularly sensitive to change in a large sample of PCa patients. METHODS: In this nationwide registry study (2017–2019), PCa patients in Norway (n = 620) and a matched reference group from the general population without previous cancer history (n = 1776) were invited. All participants completed the EQ-5D-5L, the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC-QLQ-C30) and the Expanded Prostate Cancer Index Composite short form (EPIC-26) pre- and post-treatment. Paired t-tests were performed with latent change scores in a structural equation model framework. RESULTS: EQ-5D-5L showed minor changes from pre- to post-treatment for four dimensions and sum score (Cohen’s d ≤ 0.20). EORTC-QLQ-C30 revealed a moderate decline in social function (-9.85, p < 0.001, Cohen’s d -0.52). EPIC-26 showed a large decline in sexual function (-38.1, p < 0.001, Cohen’s d -1.42), and urine incontinency (-24.3, p < 0.001, Cohen’s d -1.86). Correlations between change in EQ-5D-5L and change in domains found to be important for participants with PCa (sexual function, urine incontinence and social function) revealed small to medium correlations for the PCa group. CONCLUSIONS: The low responsiveness indicates that the EQ-5D-5L is not sensitive enough in detecting health status changes due to significant problem areas in PCa patients. Adding disease-specific measures is pivotal to measuring these changes in health status.
Longitudinal associations between congruence in dyadic care type and health-related quality of life among multiple chronic conditions patient-caregiver dyads.
De Maria M, Stokes JE, Saurini M … +5 more , Vellone E, Ausili D, Matarese M, Buck HG, Irani E
Qual Life Res · 2026 Feb · PMID 41636887 · Publisher ↗
PURPOSE: Patient–caregiver (i.e. dyadic) partnerships are essential in the management of multiple chronic conditions, as they can significantly influence emotional adjustment and the overall dynamics of the relationship....
PURPOSE: Patient–caregiver (i.e. dyadic) partnerships are essential in the management of multiple chronic conditions, as they can significantly influence emotional adjustment and the overall dynamics of the relationship. This study aims to examine how congruence—defined as patients and caregivers reporting the same dyadic care type (patient-oriented, caregiver-oriented, or collaborative)—predicts mental health-related quality of life (HRQoL) and how specific congruent management approaches contribute to HRQoL in patient-caregiver dyads over 12 months. METHODS: Multicenter, observational, longitudinal study. 871 Italian patient–caregiver dyads were recruited. Each dyad comprised a patient aged 65 years or older living with multiple chronic conditions and their family caregiver. Data were collected at baseline (time 0), 6 (time 1), and 12 months (time 2). Mental HRQoL was assessed with the Short Form-12 Mental Component Summary (MCS; scores range 0–100, with higher scores indicating better outcomes). Descriptive statistics and longitudinal mixed effects models with autoregressive errors were used for data analysis. RESULTS: Patient-oriented congruency was associated with better patient mental HRQoL - (B = 3.17) while caregiver-oriented congruency was associated with worse patient mental HRQoL (B = − 4.36). Becoming a collaborative-congruent dyad was associated with improved mental HRQoL (B = 1.60). There were no significant associations with caregiver mental HRQoL. CONCLUSION: The improvement in patient mental HRQoL as a result of becoming a collaborative congruent dyad supports the importance of collaborative management approaches. Nurses can guide dyad members to reflect on their respective roles in managing multiple chronic conditions to enhance their teamwork skills for collaborative approaches.
Predicting health-related quality of life for patients with gastroesophageal cancer.
Kuijper SC, Cara I, Geleijnse G … +8 more , Slingerland M, Nieuwenhuijzen GAP, Lagarde SM, Klarenbeek BR, Kouwenhoven EA, van Hillegersberg R, Verhoeven RHA, van Laarhoven HWM
Qual Life Res · 2026 Feb · PMID 41634387 · Full text
BACKGROUND: Gastroesophageal cancer has a poor prognosis, and treatment significantly impacts health-related quality of life (HRQoL). Accurate prediction of HRQoL changes after treatment can support shared decision-makin...
BACKGROUND: Gastroesophageal cancer has a poor prognosis, and treatment significantly impacts health-related quality of life (HRQoL). Accurate prediction of HRQoL changes after treatment can support shared decision-making. This study aimed to develop and validate HRQoL prediction models for patients with gastroesophageal cancer using established risk-prediction models and a newly proposed sequential score model. METHODS: HRQoL data came from the Prospective Observational Cohort Study of Esophageal-Gastric Cancer Patients registry, linked to the Netherlands Cancer Registry. The EORTC QLQ-C30 functioning scales were used as outcomes. Risk-prediction models, based on logistic elastic-net regression, estimated the probability of meaningful HRQoL deterioration at 3, 6, and 12 months post-treatment. The sequential score model, using XGBoost regression, predicted the next HRQoL score at any time. Calibration curves and integrated calibration index (ICI) assessed predictive performance, with Brier scores and AUC for risk-prediction models and root mean squared error plus Out-of-Sample r for sequential models. RESULTS: Risk-prediction models showed strong performance (ICI: 0.03-0.08; Brier score: 0.09-0.17; AUC: 0.79-0.87) for predicting significant deterioration in Summary Score, Physical Functioning, and Fatigue, with good calibration. Sequential score models explained up to 40% of the variance in HRQoL scores. CONCLUSION: Both models effectively predicted HRQoL in gastroesophageal cancer patients, demonstrating potential to enhance patient care and information sharing through accurate prediction of HRQoL outcomes.
Unconscious death thoughts: Do they play a role in time trade-off and visual analogue scale scores for health?
Stalmeier P, Rencz F, Rutjens B … +1 more , Roudijk B
Qual Life Res · 2026 Feb · PMID 41634385 · Full text
BACKGROUND: Several factors influence the Time Trade-off (TTO) and Visual Analogue Scale (VAS) health measures. In qualitative TTO studies, respondents often report thoughts of death which may induce mortality awareness....
BACKGROUND: Several factors influence the Time Trade-off (TTO) and Visual Analogue Scale (VAS) health measures. In qualitative TTO studies, respondents often report thoughts of death which may induce mortality awareness. According to Terror Management Theory (TMT), mortality awareness gives rise to anxiety and increases unconscious death thought accessibility (DTA), potentially mitigated by secure attachment. Therefore a relation between DTA and attachment versus TTO and VAS is expected. RESEARCH QUESTIONS: (1) Does DTA occur in TTO and VAS methods, (2) How are DTA and attachment related to TTO and VAS scores. We hypothesize: (1) DTA increases when respondents complete TTO or VAS tasks, and (2) TTO scores increase in those with a secure attachment. METHODS: In an online experiment, 4572 members of the general public were randomised to one of four conditions: TTO, VAS, Mortality Salient (MS), and control. TTO and VAS scores were obtained for a hypothetical wheelchair health state, and for self-experienced health. MS and control conditions served as manipulation checks. DTA was measured with a validated word completion task. ANOVAs and Pearson’s correlations examined differences between conditions and associations among variables. RESULTS: Mean (SD) DTA scores were: TTO = 2.86, (1.75); VAS = 2.94, (1.72); MS = 3.24, (1.89); control = 2.98, (1.70). The MS condition showed elevated DTA. Unexpectedly, DTA in the TTO condition tended to be lower than in the control condition, 95% CI [− .27, .03]. DTA was not associated with the TTO. DTA was negatively correlated with the VAS, both for the wheelchair and self-experienced states (both r = − 0.13, p < .01). Attachment showed negative correlations with the TTO and VAS self-experienced health scores (− 0.17 to − 0.13, p < 0.001), but was not associated with hypothetical wheelchair scores. CONCLUSION: DTA and attachment are novel factors influencing TTO and VAS scores. Our data suggest that VAS may reflect broader psychological health concepts than the TTO, despite that both methods quantify health. The rational nature of the TTO may suppress DTA. In this online context, DTA was unrelated to hypothetical wheelchair state scores, suggesting that DTA might have little impact on national health valuation studies.
Testing culturally relevant EQ-5D-5L bolt-ons for the Chinese general population: first quantitative phase of a mixed methods study.
Fan J, Mao Z, Rencz F … +3 more , Yang Z, Luo N, Wang P
Qual Life Res · 2026 Feb · PMID 41634167 · Publisher ↗
OBJECTIVE: As part of a large mixed-methods study, we aim to develop culturally relevant additional dimensions (bolt-ons) for the EQ-5D-5L in China. In the qualitative phase, we developed seven candidate bolt-ons. In thi...
OBJECTIVE: As part of a large mixed-methods study, we aim to develop culturally relevant additional dimensions (bolt-ons) for the EQ-5D-5L in China. In the qualitative phase, we developed seven candidate bolt-ons. In this first quantitative phase, we aimed to test the psychometric properties of these bolt-ons in the Chinese adult general population. METHODS: An online survey was conducted among a representative sample of the Chinese general population (n = 1,037) to collect data on the EQ-5D-5L + bolt-ons, SF-6Dv2, EQ-HWB-9, general health status, and socio-demographics. Psychometric analysis was performed to assess the EQ-5D-5L + bolt-ons, including ceiling, informativity, convergent and divergent validity, known-group validity and explanatory power. RESULTS: Adding bolt-ons reduced the ceiling of the EQ-5D-5L by 2.3%-points (adaptation to society) to 7.6%-points (tiredness/lack of strength). Tiredness/lack of strength had the highest relative informativity (Shannon's evenness index = 0.67). Appetite and social relationships showed the best divergent validity from the five core dimensions. Tiredness/lack of strength demonstrated strong or moderate correlations with SF-6Dv2 vitality (r = 0.648) and EQ-HWB-9 exhaustion (r = 0.541) dimensions. Adding tiredness/lack of strength, climate adaptation and emotional control improved the explanatory power for the EQ VAS score. Tiredness/lack of strength enhanced the known-groups validity for differentiating between respondents based on the presence of chronic diseases and in group comparisons by SF-6Dv2 level sum scores. CONCLUSION: The tiredness/lack of strength bolt-ons performed best, but the sleep problems and appetite bolt-ons also improved several psychometric properties of the EQ-5D-5L in the Chinese general population. Combined with patient evidence, these findings may inform evidence-based bolt-on selection in the Chinese context.
Health-related quality of life in patients receiving medicinal cannabis: systematic review and meta-analysis of primary research findings 2015-2025.
Tait MA, Acret L, Costa DSJ … +3 more , Campbell R, White K, Rutherford C
Qual Life Res · 2026 Feb · PMID 41621036 · Full text
PURPOSE: The global burden of chronic health conditions is significant. Medicinal cannabis (MC) is a legalised treatment option for patients with chronic health conditions in some countries. Health-related quality of lif...
PURPOSE: The global burden of chronic health conditions is significant. Medicinal cannabis (MC) is a legalised treatment option for patients with chronic health conditions in some countries. Health-related quality of life (HRQL) is an important patient-reported outcome across all chronic health conditions. We aimed to determine how studies of MC therapy justify, measure, and report HRQL, and assess the current evidence for HRQL following MC treatment. METHODS: Systematic review searching AMED, Medline, Web of Science, Scopus, Embase, Cinahl, and PsycINFO from Jan 2015 to Apr 2025. Studies using validated HRQL measures pre-, and post-MC treatment for any chronic health condition were included. Screening and data extraction were performed independently by two reviewers. Completeness of HRQL reporting was evaluated. Meta-analyses for short-term (2-weeks to 3-months), medium-term (> 3 to < 12-months), and long-term (≥ 12-months) HRQL outcomes were conducted, with Risk of Bias (RoB) assessed in randomised control trials (RCTs). RESULTS: Of 16,674 retrieved citations, 64 studies were retained for analysis:12 RCTs; 38 cohort studies; 13 case series; 1 non-randomised experimental study. Thirty-nine studies (61%) provided justification for assessing HRQL and five (8%) provided HRQL definitions. Studies used generic (n = 52, 81%) or condition-specific (n = 12, 19%) HRQL measures, with EQ-5D-5L most commonly used. Meta-analyses: RCTs showed small short-term HRQL improvements (Cohen's d = 0.30, p = 0.03), with some concerns or low RoB. For observational studies, HRQL improved in all follow-up periods (d = 0.43 to 0.74; all p < 0.001). HRQL improvement varied between, and within, different health conditions. CONCLUSION: This systematic review and meta-analyses of studies published between 2015 and 2025 found that few studies provided HRQL definitions, and a third of studies did not explain why they measured HRQL. To ensure appropriate measures are used for this important treatment outcome, future studies should define HRQL and justify the HRQL assessment in the context of research objectives. Overall, improvements in HRQL were observed across studies of patients using MC.
Mixed-Methods to Define Meaningful Change using Exit Interviewand Clinical Trial Data in Patients with Tenosynovial Giant Cell Tumor (TGCT).
Gelhorn HL, Cutts KN, Harrow B … +9 more , Tait C, Saunders A, Fikre T, Han Y, Zeringo NA, Van De Sande M, Tap W, Gelderblom H, Bernthal N
Qual Life Res · 2026 Feb · PMID 41621028 · Full text
BACKGROUND: Tenosynovial giant cell tumor (TGCT) is a locally aggressive neoplasm associated with limited range of motion (ROM), stiffness, joint damage, pain, and reduced physical functioning (PF). The MOTION Phase 3 tr...
BACKGROUND: Tenosynovial giant cell tumor (TGCT) is a locally aggressive neoplasm associated with limited range of motion (ROM), stiffness, joint damage, pain, and reduced physical functioning (PF). The MOTION Phase 3 trial (NCT05059262) was a randomized, placebo-controlled, double-blind study of vimseltinib among patients with TGCT. The objective of the current study was to define meaningful changes in clinical outcome assessments (COAs) measuring active ROM, PF, and stiffness using qualitative and quantitative data from patients in the MOTION trial. METHODS: Embedded exit interviews with patients in MOTION were conducted to explore meaningful changes in Patient Global Impression of Change (PGIC) anchors, active ROM, Patient-Reported Outcomes Measurement Information System (PROMIS)-PF, and Worst Stiffness numeric rating scale (NRS). Anchor- and distribution-based analyses of the MOTION data, informed by the exit interviews, were used to define responder thresholds. RESULTS: In the MOTION trial, 96/123 patients (78%) completed an exit interview. Most considered "minimally improved" responses for each question (PGIC-PF: 67%; PGIC-ROM 73%) as meaningful. Responder estimates ranged from 1.45 to 4.9 (PROMIS-PF), from 6.0 to 14.8 (active ROM), and from - 2.3 to - 0.5 (Stiffness). The cumulative distribution function curves show a clear separation between treatment groups at a wide range of values around the proposed thresholds. CONCLUSIONS: The responder definitions were at least a 3-point improvement for PROMIS-PF, a 10% improvement for active ROM, and a 2-point improvement for the Worst Stiffness NRS. Qualitative interviews facilitate integrating the patient perspective in the selection of anchors and defining meaningful change.
Quality of life among older informal caregivers in Sweden: the role of loneliness and social isolation.
Kirvalidze M, Mateo-Abad M, Beridze G … +4 more , Bernal-Alonso A, Forjaz MJ, Rodríguez-Blázquez C, Calderón-Larrañaga A
Qual Life Res · 2026 Feb · PMID 41621026 · Full text
PURPOSE: Older adults are increasingly taking up caregiving roles due to the mismatch between available formal care services and growing demands. We aimed to identify profiles of older caregivers according to their quali...
PURPOSE: Older adults are increasingly taking up caregiving roles due to the mismatch between available formal care services and growing demands. We aimed to identify profiles of older caregivers according to their quality of life (QoL), and to explore the associations of such profiles with loneliness and social isolation. METHODS: A cross-sectional analysis was conducted using cohort data from the Swedish National study on Aging and Care in Kungsholmen (SNAC-K). The study included a total of 994 unique caregivers aged 60 and above, assessed between 2001 and 2016. Multiple correspondence analysis and cluster analysis were used to obtain caregiver profiles according to the items of SF-12 QoL instrument. Multinomial logistic regressions with robust standard errors were performed to study the associations between QoL, loneliness and social isolation. RESULTS: Three distinct QoL profiles were identified: good (57.9%), moderate (34.8%), and moderate physical, poor mental (7.3%) QoL. The latter profile was characterized by the predominance of female spousal caregivers, who provided the most hours of care. Loneliness and social isolation were independently associated with higher odds of being in the moderate physical, poor mental QoL profile, compared to the good QoL profile. Men with higher social isolation levels were more likely to be in the worse QoL profile compared to women with similarly high levels of isolation. CONCLUSION: Our findings emphasize that a substantial proportion of older caregivers have suboptimal QoL, and that those with poor mental QoL also experience higher levels of loneliness and social isolation. Targeted policies to reduce caregiver burden and enhance their QoL are essential.
Air pollution and heat wave seriously affect the quality of life of children with obstructive sleep apnea.
Wu H, Fu X, Yu Q … +5 more , Yang Z, Su X, Wu W, Zhang G, Wu H
Qual Life Res · 2026 Feb · PMID 41621022 · Publisher ↗
PURPOSE: Obstructive Sleep Apnea (OSA) impairs children's quality of life (QoL), but the impact of air pollution and heat wave on pediatric OSA-related QoL remains unclear. This retrospective cross-sectional study invest...
PURPOSE: Obstructive Sleep Apnea (OSA) impairs children's quality of life (QoL), but the impact of air pollution and heat wave on pediatric OSA-related QoL remains unclear. This retrospective cross-sectional study investigated associations between short-term air pollutant (PM, PM, SO, and NO) exposure, heat wave, and QoL in children with OSA, including pollutant lag effects. METHODS: A retrospective cross-sectional study was conducted at Henan Provincial Children's Hospital (2021-2023). Eligible participants were ≤ 14-year-old Henan residents with confirmed OSA (OAHI > 1) via polysomnography. QoL was assessed by the OSA-18 Scale. Air pollutant and heat wave data were from national monitoring networks. Generalized Linear Regression Models (GLMs) analyzed continuous QoL outcomes, with sensitivity analyses performed. RESULTS: 1943 children were included. The statistical analysis results showed that PM lag03-lag07; PM lag0-lag6, lag01-lag07; SO lag0-lag2, lag01-lag07; NO lag7, lag05-lag07 were statistically correlated with the impact on the QoL of pediatric patients. The maximum effect values OR were 1.042 (95% CI 1.006, 1.079), 1.030 (95% CI 1.016, 1.045), 1.774 (95% CI 1.279, 2.462), and 1.101 (95% CI 1.013, 1.197), respectively. Additionally, heat wave was associated with worse QoL (OR:1.537, 95% CI 1.021, 2.313). Sensitivity analyses confirmed result stability. CONCLUSIONS: Air pollutants (especially SO and NO) and heat waves reduce QoL in children with OSA, highlighting the need for targeted environmental interventions.
Generic instruments for assessing self-management abilities and behaviors in patients with chronic diseases: a COnsensus-based standards for the selection of health measurement INstruments (COSMIN)-based systematic review.
Liu K, Meng G, Li C … +3 more , Wang S, Fan X, Chen Q
Qual Life Res · 2026 Feb · PMID 41621004 · Publisher ↗
AIMS: To evaluate and synthesize the psychometric properties of generic instruments measuring self-management abilities and behaviors in patients with chronic diseases that have been validated in the literature. DESIGN:...
AIMS: To evaluate and synthesize the psychometric properties of generic instruments measuring self-management abilities and behaviors in patients with chronic diseases that have been validated in the literature. DESIGN: A systematic review of psychometric properties with the COnsensus-based Standards for the Selection of health Measurement INstruments (COSMIN) methodology. METHODS: A systematic search was conducted in PubMed, EMBASE, Web of Science, Scopus, CINAHL, ProQuest Health and Medical Collection, CNKI and WANFANG DATA from May 15, 2025 to May 20, 2025. Inclusion of articles published before May 15, 2025. Two independent researchers screened literatures, extracted data and evaluated psychometric properties using COSMIN criteria while assessing evidence quality via the GRADE method. This review was reported following PRISMA-COSMIN for OMIs 2024 statement checklist. RESULTS: We identified 15 eligible instruments from 58 studies. Among these, CanSMART Self-management Task Questionnaire (CanSMART) and Patient-Reported Outcomes Measurement Information System (PROMIS) were recommended against use. Other instruments were classified as No Conclusion, indicating they may be suitable for use but require further validation. The Short Form Patient Activation Measure (PAM-13) and Six-item Self-Efficacy to Manage Chronic Disease Scale (SEMCD-6) were recommended for current use based on their sufficient content validity. CONCLUSION: With the exception of CanSMART and PROMIS, all instruments require further validation. The PAM-13 and SEMCD-6 stand out as the most currently applicable instruments. These findings support healthcare providers, researchers, and policymakers in selecting validated instruments to assess and enhance self-management in chronic disease populations, ultimately contributing to improved patient-centered care, quality of life, and health outcomes.
Impact of adverse childhood experiences on health-related quality of life in Australian women with endometriosis: a population-based cohort study.
Gete DG, Doust J, Mortlock S … +2 more , Abbott J, Mishra GD
Qual Life Res · 2026 Feb · PMID 41620997 · Full text
PURPOSE: To examine the associations between adverse childhood experiences (ACEs) and health-related quality of life (HRQoL) among Australian women with endometriosis. METHODS: This population-based cohort study included...
PURPOSE: To examine the associations between adverse childhood experiences (ACEs) and health-related quality of life (HRQoL) among Australian women with endometriosis. METHODS: This population-based cohort study included 1,120 women with endometriosis born in 1973–78 and 1989–95, using data from the Australian Longitudinal Study on Women’s Health and its sub-study, the Genetic variants, Early Life exposures, and Longitudinal Endometriosis symptoms Study. HRQoL was assessed using the Endometriosis Health Profile-30, and ACEs were measured using a validated 21-item questionnaire. Ordinal logistic regression models were used for analyses. RESULTS: Women who experienced ACEs were more likely to be diagnosed with endometriosis than those who did not. Among women with endometriosis, a clear dose-response relationship was observed, with higher cumulative ACE scores and greater trauma severity associated with progressively poorer HRQoL across all domains. In the 1973–78 cohort, the strongest associations between cumulative ACEs and HRQoL were observed in the domains of social support, self-image, and emotional well-being, with adjusted odds ratios (95% CIs) of 1.41 (1.24, 1.58), 1.41 (1.24, 1.60), and 1.30 (1.15, 1.46), respectively. Women reporting very/extremely traumatic experiences also had significantly worse outcomes across all domains, particularly for social support 4.42 (2.36, 8.28), emotional well-being 4.38 (2.36, 8.12), and self-image 3.29 (1.77, 6.11). Psychological abuse, physical abuse, and household mental illness were consistently associated with poorer HRQoL, particularly in the social support domain. Similar patterns were observed in the 1989–95 cohort, though with some domain-specific variations. CONCLUSION: Childhood adversity significantly impairs HRQoL in women with endometriosis, particularly psychological abuse, physical abuse, and household mental illness. These findings highlight the need for trauma-informed care in endometriosis management, with careful consideration of the limitations of routine ACE screening.
Changes in health-related quality of life during outpatient rehabilitation: a prospective observational cohort study in four patient groups.
Oosterveer DM, Ophelders MEH, Mourits BMP … +3 more , Scholten EWM, Visser-Meily JMA, de Graaf JA
Qual Life Res · 2026 Feb · PMID 41620990 · Full text
PURPOSE: To evaluate changes in health-related quality of life (HRQoL) of different patient groups, as measured using the EuroQoL (EQ5D) during outpatient multidisciplinary rehabilitation. METHODS: Patients with acquired...
PURPOSE: To evaluate changes in health-related quality of life (HRQoL) of different patient groups, as measured using the EuroQoL (EQ5D) during outpatient multidisciplinary rehabilitation. METHODS: Patients with acquired brain injury, chronic pain, neurodegenerative diseases or oncological diagnoses, who received outpatient multidisciplinary rehabilitation, were included in a multi-center prospective observational cohort study. They completed the EQ5D, consisting of an index and a Visual Analogue Scale (VAS), at the start of outpatient rehabilitation (T0) and 6 months thereafter (T1), and two perceived change questions (about quality of life and about general health) at T1. RESULTS: Both EQ5D index and VAS improved for the total sample (n = 419, 68.8% females, mean age 54.5 years) and for each patient group, with the exception of the EQ5D VAS in patients with neurodegenerative diseases. The latter group showed less improvement, as measured on the EQ5D index, than patients with chronic pain (p = 0.004), and less on VAS compared to the other patient groups (all p < 0.05). At an individual level, 76.8% (304/396) of all patients reported improvement on the perceived change question about quality of life and 279/419 (66.6%) on the perceived change question about general health. Again, patients with neurodegenerative diseases had the lowest percentages (49/83 (59.0%) and 39/85 (47.0%), respectively). CONCLUSION: All patient groups improved on HRQoL during outpatient multidisciplinary rehabilitation, both at group and individual level. However, patients with neurodegenerative diseases showed slightly less improvement than other patient groups, which may reflect the progressive nature of their disease rather than lower rehabilitation effectiveness.
Analysis of quality-adjusted survival time without symptoms or toxicity for pembrolizumab plus chemotherapy as treatment for previously untreated participants with advanced or metastatic esophageal cancer.
Zhang Y, Diez Garcia M, Shah S … +4 more , Joo S, Valderrama A, Zhang S, Enzinger PC
Qual Life Res · 2026 Feb · PMID 41620988 · Full text
BACKGROUND: Results of the KEYNOTE-590 trial showed that first-line pembrolizumab plus chemotherapy significantly improved overall and progression-free survival versus chemotherapy alone, and the safety profile was manag...
BACKGROUND: Results of the KEYNOTE-590 trial showed that first-line pembrolizumab plus chemotherapy significantly improved overall and progression-free survival versus chemotherapy alone, and the safety profile was manageable for participants with previously untreated advanced or metastatic esophageal cancer. Using the quality-adjusted time without symptoms or toxicity (Q-TWiST) method of analysis, we assessed the benefit/risk profile of pembrolizumab plus chemotherapy. METHODS: Using data from the KEYNOTE-590 study, we partitioned participant survival time into three health states: time living with all-cause grade ≥ 3 adverse events (AEs) before disease progression (PD; TOX), time before start of PD or death without grade ≥ 3 AEs (TWiST), and time from the start of PD to death or the censoring date (REL). We calculated Q-TWiST by summing the restricted mean time spent in each health state weighted by health state utilities estimated using the EuroQol 5-Dimension, 5-Level quality-of-life questionnaire (EQ-5D-5L). The relative gain in quality-adjusted survival time was defined as the Q-TWiST difference divided by the survival time from chemotherapy alone. A relative gain of > 10% is considered “clinically important,” and a relative gain of > 15% is considered “clearly clinically important.” This analysis was primarily focused on clinical significance rather than statistical significance due to the nature of the Q-TWiST analyses. No prespecified formal hypothesis testing was performed, and hence, there was no adjustment for multiplicity. RESULTS: At a maximum follow-up of 30 months, Q-TWiST was 2.23 months longer with pembrolizumab plus chemotherapy versus chemotherapy alone for all randomly assigned participants and was clearly clinically important, with a relative Q-TWiST gain of 17.86%. In all three subpopulations, including participants with esophageal squamous cell carcinoma (ESCC), programmed cell death ligand 1 (PD-L1) combined positive score (CPS) ≥ 10, and ESCC PD-L1 CPS ≥ 10, Q-TWiST gain with pembrolizumab plus chemotherapy versus chemotherapy was 2.29 to 3.87 months, equivalent to a relative Q-TWiST gain of 18.12% to 33.47%, which are all clearly clinically important. CONCLUSIONS: Although this analysis is limited by missing data and short follow-up time, pembrolizumab plus chemotherapy provided clinically meaningful and substantial benefit in quality-adjusted survival by Q-TWiST analysis versus chemotherapy alone in participants with advanced esophageal cancer. TRIAL REGISTRATION: Trial registration for KEYNOTE-590 ClinicalTrials.gov, NCT03189719 (date of registration: June 14, 2017).
Patients' interpretations of individual PROMIS-10 Global Health items: a cognitive interview study in high-impact chronic pain.
Madley ES, Vaegter HB, Razinak LMS … +2 more , Broholm D, Ravn SL
Qual Life Res · 2026 Feb · PMID 41620986 · Full text
PURPOSE: The purpose of this study was to explore the content validity of the Danish version of the PROMIS-10 Global Health questionnaire in patients with high-impact chronic pain by (1) identifying problematic items and...
PURPOSE: The purpose of this study was to explore the content validity of the Danish version of the PROMIS-10 Global Health questionnaire in patients with high-impact chronic pain by (1) identifying problematic items and reasons for misunderstandings between participants' interpretations and the intended meaning, and (2) exploring how participants understand and interpret the items. METHODS: Individual cognitive interviews were conducted with participants with high-impact chronic pain referred to two Danish Pain Centers using a structured step-by-step interview approach. The first objective was analyzed mainly using a deductive structured approach, while the second objective was analyzed mainly using an inductive thematic approach focusing on participants' perspectives. RESULTS: Participants (n = 19) generally understood the items as intended but showed 21% and 11% non-congruency for items 8r (fatigue) and 7r (pain intensity), as they responded based on a longer timeframe than "the past 7 days". Overall, participants interpreted the items through a physical, psychological and social perspective. Further, items 5 (social activities and relationships) and 6 (daily physical activities) were perceived to overlap thematically with item 9r (social activities and roles). Additionally, the provided examples in items 5 and 6 influenced responses, and some deemed item 7r irrelevant, as it did not reflect their pain experiences. CONCLUSION: The findings contribute to the validation of PROMIS-10 Global Health in patients with high-impact chronic pain by providing insights into how participants understand and interpret the items, highlighting areas for minor refinement. Further qualitative research on the validity of PROMIS-10 Global Health in this population is needed.
What constitutes important change in individual PROMIS-10 global health items in patients with high-impact chronic pain: a qualitative interview study.
Madley ES, Broholm D, Ravn SL … +1 more , Vaegter HB
Qual Life Res · 2026 Jan · PMID 41571957 · Full text
PURPOSE: Health-related quality of life is a key outcome for patients with high-impact chronic pain, and the PROMIS-10 Global Health questionnaire is widely used to assess it. This study examined what patients perceive a...
PURPOSE: Health-related quality of life is a key outcome for patients with high-impact chronic pain, and the PROMIS-10 Global Health questionnaire is widely used to assess it. This study examined what patients perceive as important changes in PROMIS-10 Global Health items by 1) 1) examining how much each item should change to be perceived as important, and 2) exploring why and how these changes were considered important. METHODS: Individual semi-structured interviews with 17 participants with high-impact chronic pain were conducted. Analysis for objective one involved determining item-level thresholds for important change by aggregating participants’ reported change scores for each item. Analysis for objective two involved thematic analysis to explore how and why such changes were perceived as important. RESULTS: For items rated on a 5-point Likert scale, change scores perceived as important ranged from a mean of 1.09 (median = 1) for item 1 (general health) to a mean of 1.84 (median = 2) for item 8r (fatigue). For item 7r (pain intensity), rated on a 0–10 scale, a mean change score of 4.36 (median = 4.25) was considered important. Thematic analysis identified one to two themes per item, reflecting perceived important improvement across physical, mental, and social health. CONCLUSION: This is the first qualitative study to explore what patients with high-impact chronic pain perceive as important changes in PROMIS-10 Global Health items. Findings reflect important improvements across physical, mental, and social health, highlighting the value of patient perspectives in clinical use. Further qualitative research is needed to enhance interpretation and inform clinical applications.
Identifying key outcome domains with underlying specific patient-reported outcomes for psychomotor therapy in mental health care in the Netherlands: a multi-phased qualitative study.
de Haan A, Moeijes J, Scheffers M … +1 more , van der Wees P
Qual Life Res · 2026 Jan · PMID 41563641 · Full text
PURPOSE: Psychomotor therapy is an experiential therapy using movement- and body-oriented interventions to diminish psychiatric symptoms and improve psychosocial functioning. However, routine evaluation of patient-report...
PURPOSE: Psychomotor therapy is an experiential therapy using movement- and body-oriented interventions to diminish psychiatric symptoms and improve psychosocial functioning. However, routine evaluation of patient-reported outcomes (PROs) and standardisation of patient-reported outcome measures (PROMs) in psychomotor therapy research and practice in adult mental healthcare are lacking, resulting in a gap in systematic research and evaluation of psychomotor interventions. This study aims to select the five most relevant outcome domains with underlying PROs for psychomotor therapy from the perspective of psychomotor professionals and patients. METHOD: A multi-phased qualitative study was conducted in the Netherlands, consisting of three sub-studies: (i) the selection of the five most relevant outcome domains with underlying PROs from the perspective of psychomotor professionals (N = 53), using a modified Nominal Group Technique in an adapted serial design; (ii) the selection of the five most relevant outcome domains with underlying PROs from the perspective of patients (N = 27) using a narrative approach in (focus) groups; and (iii) the synthesised selection from (i) and (ii). RESULTS: Psychomotor professionals selected body experience, movement experience, emotion regulation, stress regulation, and sensory awareness as the most relevant outcome domains. Patients selected body experience, social interaction, movement experience, emotion regulation, and integration of thinking, feeling and behaviour. After synthesising both selections, the five most relevant outcome domains for psychomotor therapy are body experience, movement experience, emotion regulation, social interaction, and stress regulation. CONCLUSION: The five most relevant outcome domains with underlying PROs in psychomotor therapy in adult mental healthcare in the Netherlands have been identified and are broadly supported by psychomotor professionals and patients. These outcome domains provide the foundation for selecting PROMs for evaluating interventions and monitoring outcomes in psychomotor therapy.
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