Quality Of Life Research[JOURNAL]
Sun
200 papers
Lung function trajectory: a partial mediator of the relationships between depressive symptoms and health-related quality of life in the aging population.
Li T, Zhang Z, Ma R … +6 more , Chu H, Qian Y, Xia J, Li P, Wang Z, Zou T
Qual Life Res · 2026 Apr · PMID 41961144 · Publisher ↗
OBJECTIVE: Depressive symptoms are prevalent, heterogeneous conditions involving physical and psychological manifestations, and are associated with impairment of health-related quality of life (HRQoL). We aimed to estima...
OBJECTIVE: Depressive symptoms are prevalent, heterogeneous conditions involving physical and psychological manifestations, and are associated with impairment of health-related quality of life (HRQoL). We aimed to estimate the association between depressive symptoms, lung function trajectories, and HRQoL in aging individuals, and explore whether lung function trajectory explains part of the association between depressive symptoms and HRQoL in ageing population. METHODS: This study used data from waves 2, 4, 6, and 7 of the Survey of Health, Ageing and Retirement in Europe (SHARE), comprising 7848 observations from participants aged 50 years and older across multiple European countries. Group-based trajectory modelling identified distinct longitudinal trajectories of lung function by sex. Multinomial logistic regression was used to examine the associations of depressive symptoms and lung function trajectories with HRQoL. To assess whether the association between depressive symptoms and HRQoL could be explained by an indirect pathway involving lung function trajectory, a parallel-process latent growth curve model was performed. RESULTS: A strong dose-response relationship was observed between the cumulative exposure level of depressive symptoms, lung function trajectories, and HRQoL. The longitudinal analysis revealed that the association between depressive symptoms and HRQoL was partially accounted for by an indirect association involving lung function trajectory. A statistically significant indirect effect of depressive symptoms on HRQoL through the intercept of lung function was observed in both males and females. CONCLUSIONS: The findings underscore that depressive symptoms, lung function decline, and HRQoL are interrelated in the aging population. This suggests that strategies addressing depressive symptoms could be relevant for comprehensive care aimed at preserving lung health and HRQoL.
Factors influencing the caregiver burden on primary family caregivers of stroke survivors: a scoping review.
Hongwei Y, Juan W, Hui J … +6 more , Zhongjian L, Xuechun L, Yaqiong A, Mingyue Z, Lingmei R, Xiaoqian W
Qual Life Res · 2026 Apr · PMID 41920479 · Full text
BACKGROUND: Stroke is a leading cerebrovascular disease characterized by high incidence and significant disability rates. Following the acute phase, most stroke survivors require prolonged home-based rehabilitation and c...
BACKGROUND: Stroke is a leading cerebrovascular disease characterized by high incidence and significant disability rates. Following the acute phase, most stroke survivors require prolonged home-based rehabilitation and care, a responsibility predominantly undertaken by primary family caregivers. The sustained demands of caregiving often impose considerable physical, psychological, and social burdens on these individuals. OBJECTIVE: This review aims to systematically identify and synthesize the factors influencing the caregiving burden among primary family caregivers of stroke survivors. METHODS: This scoping review followed the Joanna Briggs Institute’s methodological framework. A comprehensive literature search was conducted in the following databases: Web of Science, PubMed, CINAHL, Cochrane Library, Embase, CNKI, CBM, Wanfang Date, and VIP. The search included articles published from inception until October 24, 2025. All study designs reporting on factors influencing the caregiving burden of primary family caregivers of stroke survivors were eligible for inclusion. RESULTS: A total of 2005 records were identified, of which 35 articles met the inclusion criteria. The included studies comprised 30 cross-sectional studies (85.71%), four prospective cohort studies (11.43%), and one mixed-methods study (2.86%). Most of the included studies were from Asian countries, including China (n = 28), South Korea (n = 2), Poland (n = 2), Greece (n = 1), India (n = 1), and Thailand (n = 1). Eleven studies (31.4%) reported incidence data, but substantial heterogeneity precluded direct quantitative synthesis. A total of 65 influencing factors were identified and grouped into three categories: caregiver-related factors, patient-related factors, and family and social support factors. The most frequently reported factors included caregiver age (n = 19), average daily caregiving hours (n = 19), patient activities of daily living (n = 19), caregiver - patient relationship (n = 16), and caregiver education level (n = 16). CONCLUSION: The caregiving burden among primary family caregivers of stroke survivors is influenced by a wide range of factors. To reconcile inconsistent or contradictory findings, further research using standardized assessment tools and methodologies is warranted.
From QI-disability to QID-12: creating a brief proxy-report measure of quality of life for children with intellectual disability.
Licari MK, Whitehouse AJO, Ludwig NN … +10 more , Wojnaroski M, Hommer R, Conecker G, Hecker J, Muzyczka K, Leonard H, Williams KJ, Reddihough DS, Downs J, Jacoby P
Qual Life Res · 2026 Apr · PMID 41920472 · Full text
PURPOSE: Quality of Life Disability (QI-Disability) is a 32-item parent-report measure assessing quality of life (QOL) in children with intellectual disability across domains of physical health, positive emotions, negati...
PURPOSE: Quality of Life Disability (QI-Disability) is a 32-item parent-report measure assessing quality of life (QOL) in children with intellectual disability across domains of physical health, positive emotions, negative emotions, social interactions, leisure and outdoors, and independence. This study aimed to develop and validate a short form for use in clinical and research settings. METHODS: Caregivers of 1,699 children with intellectual disability aged 3–18 years and representing mild to profound functional impairments, completed the QI-Disability measure as part of different studies. A Genetic Algorithm (GA) was applied to select a reduced item set. The short form was evaluated against the original scale using correlational, reliability, and Rasch analyses. RESULTS: The GA-derived 12-item set (QID-12) represented each of the six QOL domains. Correlation between QID-12 and QI-Disability total scores was high (r = 0.97). Internal consistency of QID-12 was acceptable (α = 0.85). Rasch analysis demonstrated good fit of all items to the partial credit model, person separation reliability was 0.84, and there was no evidence of multidimensionality (p > 0.99). Item targeting was appropriate across the ability spectrum. Disordered category thresholds were observed for three items, but overall psychometric performance remained satisfactory. CONCLUSION: QID-12 provides a valid and reliable short form of the QI-Disability. It retains coverage of the key domains of child QOL while substantially reducing respondent burden, supporting its use in both clinical practice and population research.
Characterizing heterogeneity in health-related quality of life trajectories in coronary artery disease: a longitudinal latent Markov analysis.
Michael HU, Wilson TA, Southern DA … +7 more , Arimoro OI, Awosoga OA, Graham MM, Wilton SB, James MT, Lix LM, Sajobi TT
Qual Life Res · 2026 Apr · PMID 41920451 · Publisher ↗
PURPOSE: This study used latent Markov modelling (LMM) to identify distinct HRQOL states and predictors of transitions in a large CAD cohort. METHOD: Data were from 6,030 patients in the Alberta Provincial Project for Ou...
PURPOSE: This study used latent Markov modelling (LMM) to identify distinct HRQOL states and predictors of transitions in a large CAD cohort. METHOD: Data were from 6,030 patients in the Alberta Provincial Project for Outcome Assessment in Coronary Heart Disease (APPROACH) registry who underwent coronary angiography between 2004 and 2014. HRQOL was assessed using the 7-item Seattle Angina Questionnaire (SAQ-7) at 2 weeks, 1 year, and 3 years post-angiography. LLM identified distinct subgroups and transition probabilities between states. Covariates were incorporated via multinomial logistic regressions for state membership and transitions. RESULT: The mean age was 65.5 years (SD 10.6); 79.3% of the participants were male. Four states were identified: Poor, Moderate, Optimal, and Good. At week 2, Poor, Moderate, and Optimal comprised 28.2%, 39.0%, and 32.8% of patients, respectively. The Good state emerged at year 1, becoming predominant by year 3 (70.0%). The Good state showed high stability (85% probability of persistence). Among patients starting in Poor, 53% transitioned to Good and 15% to Optimal by year 3. Younger age (Odds Ratio [OR] = 0.97 per year, 95% confidence interval [CI]: 0.95–0.99), male sex (OR = 2.18, 95% CI: 1.35–3.54), and coronary artery bypass grafting (OR = 1.98, 95% CI: 1.04–3.74) were associated with transitions from Poor to Optimal state. CONCLUSION: HRQOL trajectories after CAD diagnosis are dynamic and heterogeneous, with most patients experiencing improvement within one year. Person-centred latent state modelling offers insight into long-term health status and may guide tailored recovery strategies.
Measuring health-related quality of life in multiple sclerosis: comparing the acceptability, validity and responsiveness of the EQ-5D-3L and MSIS-8D.
Goodwin E, Michalowsky B, Middleton R … +1 more , Hawton A
Qual Life Res · 2026 Apr · PMID 41920450 · Full text
PURPOSE: Concerns have been raised about the sensitivity and responsiveness of the EQ-5D, one of the most commonly used preference-based health-related quality of life measures, in the context of multiple sclerosis (MS)....
PURPOSE: Concerns have been raised about the sensitivity and responsiveness of the EQ-5D, one of the most commonly used preference-based health-related quality of life measures, in the context of multiple sclerosis (MS). In response to these concerns, a condition-specific preference-based measure, the Multiple Sclerosis Impact Scale Eight Dimensions (MSIS-8D), was developed. This research aimed to assess the psychometric and distributional properties of the MSIS-8D compared to the EQ-5D-3L, in people with MS. METHODS: Analyses were undertaken using data from the UK MS Register. Both measures were compared in terms of acceptability (missing data), distributional properties (health state frequencies, health state density curves and indices), construct validity in relation to disability, mobility, fatigue, anxiety and depression (discriminative and convergent validity, using ANOVA, independent t-tests and Spearman correlations), and responsiveness to symptom onset and relapse (mean change scores, standardised response means, standardised effect sizes, paired t-tests). RESULTS: The MSIS-8D exhibited superior distributional properties, while the EQ-5D-3L showed greater acceptability. Both measures demonstrated excellent construct validity. Neither measure appeared responsive to symptom onset, and only the MSIS-8D met all criteria for responsiveness when people moved from a non-relapse to a relapse state. CONCLUSION: Although the MSIS-8D appears to offer superior distributional properties and responsiveness compared to the EQ-5D-3L, the responsiveness of both measures in this analysis was limited. This adds weight to existing concerns about the ability of utility measures used in healthcare decision-making to fully capture treatment effects in MS.
Caregiver strain is strongly associated with health and family outcomes in military couples following traumatic brain injury in service members and veterans.
Brickell TA, Ivins BJ, Wright MM … +2 more , French LM, Lange RT
Qual Life Res · 2026 Apr · PMID 41920439 · Publisher ↗
PURPOSE: To examine the relationship between intimate partner (IP) caregiver strain with health and family outcomes in military couples with service members and veterans (SMV) experiencing chronic symptoms following trau...
PURPOSE: To examine the relationship between intimate partner (IP) caregiver strain with health and family outcomes in military couples with service members and veterans (SMV) experiencing chronic symptoms following traumatic brain injury (TBI). METHODS: Participants included 202 military couples (N = 404) classified into two groups: [1] Caregiving (169 dyads) and [2] Non-Caregiving (33 dyads). The Caregiving group was further classified into [1a] High Caregiver Strain (61 dyads) and [1b] Low Caregiver Strain (86 dyads) groups; excluding 22 dyads to maximize group distinction. Dyads completed measures of physical, psychological, social, caregiving, neurobehavioral, and/or family outcomes. RESULTS: IPs in the High Caregiver Strain group reported significantly worse scores on health and family outcome measures compared to IPs in the Low Caregiver Strain and Non-Caregiving groups (p<.05, d=0.57-1.97). SMVs of IPs in the High Caregiver Strain Group reported worse scores on outcome measures compared to SMVs of IPs in the Low Caregiver Strain and Non-Caregiving Groups (p<.05, d=0.33-0.1.60). High caregiver strain was associated with assisting SMVs with greater difficulty performing activities (p<.05, d=0.44-0.75) and providing care more hours per day (p<.001, PR = 1.90), but not TBI severity (p=.272, PR = 1.66). A higher prevalence of dyads in the High Caregiver Strain group reported clinically elevated symptoms (≥ 60T) on the health and family outcome measures (11.5%-92.0%). CONCLUSION: Caregiver strain was strongly associated with health and family outcomes in military couples with SMVs experiencing chronic symptoms post-TBI. More attention to the relationship between IP caregiver strain, SMV chronic symptoms, and health and family outcomes in military families is required.
Psychometric validation of the Danish cancer caregiver roles and responsibilities scale.
Nielsen IH, Landbo C, Rosenberg T … +4 more , Piil K, Tolver A, Shilling V, Jarden M
Qual Life Res · 2026 Apr · PMID 41920430 · Full text
PURPOSE: The purpose of this study was to translate and culturally adapt the Caregiver Roles and Responsibilities Scale (CRRS) into Danish and to conduct a psychometric analysis of its validity and reliability among info...
PURPOSE: The purpose of this study was to translate and culturally adapt the Caregiver Roles and Responsibilities Scale (CRRS) into Danish and to conduct a psychometric analysis of its validity and reliability among informal caregivers of cancer patients in Denmark. METHODS: The translation and cultural adaptation followed the Functional Assessment of Chronic Illness Therapy (FACIT) translation methodology. Cognitive debriefing interviews were carried out with ten native Danish-speaking caregivers to assess comprehensibility and relevance. Psychometric properties were evaluated using a survey, test-retest design, with data collected from 180 caregivers at baseline (t0) and a subsample of 80 caregivers at the second time point (t1), 10 days after baseline, to evaluate test–retest reliability using Intraclass Correlation Coefficient (ICC). RESULTS: The Danish CRRS demonstrated good psychometric properties, with Cronbach’s α values exceeding the acceptable threshold of 0.70 for most subscales, indicating high internal consistency. ICC analysis showed strong test—retest reliability across all subscales (ICC ≥ 0.80) and excellent reliability for the total CRRS score (ICC = 0.91), confirming the measure’s reliability over time. CONCLUSION: The Danish CRRS demonstrated good validity and test—retest reliability. The CRRS is now available for Danish-speaking individuals to use in both clinical cancer care and research for assessing the impact of cancer on the lives and wellbeing of informal caregivers.
Systematic review of the psychometric properties of quality-of-life outcome measures used with adult inpatient psychiatric populations.
McLernon S, Steen S, Bone C … +1 more , Delgadillo J
Qual Life Res · 2026 Apr · PMID 41920425 · Full text
PURPOSE: To systematically review available quality of life (QoL) measures used in adult psychiatric inpatient settings following the Consensus-based Standards for the selection of health Measurement Instruments (COSMIN)...
PURPOSE: To systematically review available quality of life (QoL) measures used in adult psychiatric inpatient settings following the Consensus-based Standards for the selection of health Measurement Instruments (COSMIN) method. METHODS: Systematic searches across four databases were conducted following a pre-registered review protocol: MEDLINE, PsycINFO, Scopus, and CINAHL. Forward and backwards citation searches were also conducted. Psychometric properties (content validity, structural validity, internal consistency, cross-cultural validity, test-retest reliability, measurement error, criterion validity, construct validity, and responsiveness) were assessed against the COSMIN criteria. A narrative synthesis was employed to integrate the results. The GRADE approach was used to assess overall certainty of the evidence. Reliable change indices (RCI) were calculated for QoL measures where sufficient data were available. RESULTS: Twenty-two QoL measures were included in the review, from 38 studies. Most measures had evidence of good structural validity and internal consistency in this clinical population. However, no outcome measure covered all measurement properties defined by COSMIN and a limited number covered content validity. CONCLUSION: Overall, a small subset of QoL measures demonstrated adequate performance across multiple psychometric properties, including: S-QOL-41, ReQoL, SF-36, and MHQOL.
Self-stigma and suicide risk mediates the associations of inattention/impulsivity symptoms with psychological distress and quality of life among people with schizophrenia.
Nguyen TTT, Soraci P, Huang HW … +6 more , Chen YL, Huang YT, Pisanti R, Chang KC, Griffiths MD, Lin CY
Qual Life Res · 2026 Apr · PMID 41920423 · Full text
PURPOSE: The present study examined whether self-stigma mediated the associations from inattention/impulsivity symptoms and suicide risk to psychological distress and quality of life (QoL) among individuals with schizoph...
PURPOSE: The present study examined whether self-stigma mediated the associations from inattention/impulsivity symptoms and suicide risk to psychological distress and quality of life (QoL) among individuals with schizophrenia. METHODS: A longitudinal study was conducted comprising 241 individuals with schizophrenia who were recruited from daycare and outpatient units in Southern Taiwan. Eligible participants were adults (≥ 20 years) diagnosed with schizophrenia and enrolled in a daycare program or receiving regular outpatient follow-up. After providing informed consent, participants were interviewed to assess self-stigma, inattention and impulsivity symptoms, suicide risk, psychological distress, and QoL. Individuals with a history of moderate to severe substance use disorder (except tobacco use disorder) or head injury were excluded. RESULTS: Self-stigma mediated the relationships between inattention and impulsivity symptoms and both psychological distress and QoL among Taiwanese individuals with schizophrenia. More specifically, the indirect effect of inattention and impulsivity symptoms at Time 1 (T1) on each QoL domain (physical, psychological, social, and environment QoL at T3 through self-stigma at T2 was significant (β = - 0.05 to - 0.03, p < 0.05). The indirect effect on psychological distress at T3 was also significant (β = 0.06, 95% CI [0.01, 0.12], p = 0.019). In addition, self-stigma at T1 significantly predicted each QoL domain (β = - 0.19 to - 0.13, p < 0.001) and psychological distress at T3 (β = 0.24, 95% CI [1.94, 4.10], p < 0.001) through self-stigma at T2. CONCLUSION: The present study demonstrated the robust influence of self-stigma in increasing psychological distress and poor QoL in each specific domain, suggesting clinical approaches are needed for managing self-stigma, inattention and impulsivity symptoms, and suicide risk among individuals with schizophrenia.
Total treatment interval and quality of life of women living with breast cancer in Ethiopia: the mediating role of financial toxicity.
Kibret AA, Jiang H, Woldetsadik ES … +3 more , Tafese MD, Deressa BT, Liu C
Qual Life Res · 2026 Apr · PMID 41920414 · Full text
PURPOSE: Delays in breast cancer care are common in low-resource settings and may adversely affect patients’ quality of life (QoL). Prolonged total treatment interval (TTI) can also impose substantial financial hardship....
PURPOSE: Delays in breast cancer care are common in low-resource settings and may adversely affect patients’ quality of life (QoL). Prolonged total treatment interval (TTI) can also impose substantial financial hardship. This study aimed to get insights into the potential mechanisms of how prolonged treatment interval impacts QoL through a mediation model and explore the mediating role of financial toxicity (FT) among Ethiopian women with breast cancer. METHODS: A cross-sectional study was conducted among 458 women with histologically confirmed breast cancer receiving treatment at three oncology centers in Ethiopia (Black Lion, Jimma, and Hiwot Fana Hospitals) between July and September 2024. QoL was assessed using the EORTC QLQ-C30, where higher functioning and global health scores indicate better QoL, while higher symptom scores reflect greater symptom burden. Financial toxicity was measured using the COST–FACIT tool, with lower scores indicating greater financial hardship. TTI was calculated as days from symptom recognition to treatment initiation. Mediation and moderated mediation analyses were performed using PROCESS v4.3 for R, controlling for sociodemographic and clinical factors. RESULTS: Of 456 (99.6%) women with complete data, 71% experienced delayed treatment initiation (> 90 days). The mean (SD) global health status and EORTC QLQ-C30 summary scores were 81.2 (19.9) and 85.8 (15.2), respectively. Longer TTI was significantly associated with poorer QoL, with declines observed in both global health status (r = − 0.22, p < 0.001) and the QLQ-C30 summary score (r = − 0.17, p < 0.001). In multivariable models, longer TTI (> 90 days) was associated with lower FT scores, indicating greater financial hardship (β = −2.72, p = 0.001). Financial toxicity was positively associated with GHS scores (β = 0.63, p < 0.001). The indirect effect of TTI on GHS through financial toxicity was significant (β = −1.70, 95% CI [− 2.94, − 0.66]), while direct and total effects were not. Similar patterns were observed for the EORTC QLQ-C30 summary and functional/symptom domains. Cancer stage did not significantly moderate the indirect pathway. CONCLUSION: Prolonged TTI impair quality of life among women with breast cancer in Ethiopia primarily through increased financial hardship rather than direct clinical effects. Interventions aimed at reducing delays and mitigating financial burden may enhance patient well-being and treatment outcomes in low-resource settings.
Impact of inactivated influenza vaccination on health-related quality of life for young children using Japanese experimental EuroQol toddler and infant populations (EQ-TIPS) v2.0.
Kitano T, Kurosawa N, Okamura T … +6 more , Hachisuka S, Yamamoto N, Nishikawa H, Onaka M, Suzuki R, Yoshida S
Qual Life Res · 2026 Apr · PMID 41920404 · Publisher ↗
PURPOSE: Evidence regarding health-related quality of life (HRQL) measurement for conditions with daily fluctuations is scarce. This study aimed to evaluate the impact of inactivated influenza vaccination (IIV) on daily...
PURPOSE: Evidence regarding health-related quality of life (HRQL) measurement for conditions with daily fluctuations is scarce. This study aimed to evaluate the impact of inactivated influenza vaccination (IIV) on daily variations in HRQL in young children. METHODS: This prospective study evaluated the daily HRQL of children aged 0–3 years between Day − 1 and Day 7 following IIV using the Japanese version of proxy-reported EuroQol Toddler and Infant Populations with three level (EQ-TIPS-3L) v2.0 and EuroQol Visual Analog Scale (EQ-VAS). To detect fluctuations in scores between the pre-vaccination and post-vaccination periods, responsiveness was assessed using the standardized response mean (SRM). Known-group validity was assessed by comparing the mean score differences between pre-vaccination and the worst post-vaccination days among those with and without adverse events. RESULTS: Responses for at least 5 of 9 days (between Day − 1 and Day 7) were obtained for 106 IIV doses (60 for the first dose and 46 for the second dose). SRM was 0.20 in the level sum score of EQ-TIPS-3L and 0.54 in EQ-VAS. Cohen’s effect size for score differences between those with and without any adverse event was 0.51 in the LSS of EQ-TIPS-3L and 0.42 in EQ-VAS, respectively. CONCLUSION: This study evaluated the performance of the experimental EQ-TIPS-3L v2.0, in capturing daily changes in HRQL following IIV among children aged 0–3 years. Although its responsiveness was low in detecting changes following IIV, the effect size between those with and without adverse events was medium. Future studies may include an evaluation of the EQ-TIPS-5L and its use for more severe conditions.
Population norms for the EQ-5D-3L and EQ-5D-5L in Peninsular Malaysia.
Vasan Thakumar A, Li X, Shafie AA … +1 more , Cheng LJ
Qual Life Res · 2026 Apr · PMID 41920393 · Full text
PURPOSE: Population norms for preference-based health-related quality of life (HRQoL) instruments provide essential reference data for burden-of-disease assessments, economic evaluations, and quality-adjusted life year (...
PURPOSE: Population norms for preference-based health-related quality of life (HRQoL) instruments provide essential reference data for burden-of-disease assessments, economic evaluations, and quality-adjusted life year (QALY) calculations. Although Malaysian EQ-5D value sets are available, population norms have not been established. This study aimed to establish the first population norms for the EQ-5D-3L and EQ-5D-5L in Peninsular Malaysia, compare their distributional characteristics, and identify factors associated with HRQoL. METHODS: We conducted a cross-sectional study among 1,137 adults aged 18 years or older across eight locations in four regional clusters of Peninsular Malaysia. Quota-based sampling was stratified by urbanicity, sex, age, and ethnicity. Participants completed the EQ-5D-5L, EQ-5D-3L, and EQ visual analogue scale (EQ VAS). We calculated index scores using Malaysian value sets and constructed survey weights using iterative proportional fitting to the 2020 Malaysian census. We estimated population norms overall and by sociodemographic strata. Multivariable regression analyses identified factors independently associated with HRQoL. RESULTS: The weighted mean EQ-5D-5L index score was 0.919 (SD 0.105), the EQ-5D-3L index score was 0.945 (SD 0.090), and the EQ VAS score was 85.4 (SD 12.5). The ceiling effect was substantially lower for the EQ-5D-5L than for the EQ-5D-3L (44.4% vs. 68.5%), with 96 and 29 unique health profiles observed, respectively. Pain/discomfort and anxiety/depression were the most frequently reported problems. Older age, unemployment, rural residence, and doctor-diagnosed disease were associated with lower HRQoL. CONCLUSION: This study provides the first population norms for the EQ-5D-3L and EQ-5D-5L in Peninsular Malaysia. These norms serve as essential reference values for clinical research, economic evaluations, and health policy decision-making.
Carers' interpretation of the recall period and perspective-taking when completing the EQ health and wellbeing instrument (EQ-HWB)-9 as proxies for people with dementia: a think-aloud study.
Ng CA, Doherty K, Bryan M … +6 more , Carlton J, Luckett T, Mulhern B, Norman R, Wills K, Roydhouse J
Qual Life Res · 2026 Apr · PMID 41920390 · Full text
PURPOSE: Patient-reported outcome measures are often administered with specific recall periods to standardise reporting. However, research on recall periods in proxy reporting is limited. This study sought to explore (1)...
PURPOSE: Patient-reported outcome measures are often administered with specific recall periods to standardise reporting. However, research on recall periods in proxy reporting is limited. This study sought to explore (1) how informal carers interpret the “last 7 days” recall period of the EQ health and well-being instrument (EQ-HWB)-9 and (2) the perspective they adopt when completing the measure to report on the health and well-being of persons with dementia. METHODS: A qualitative, descriptive study was conducted. Convenience sampling was used for recruitment. We interviewed informal carers of persons with dementia in Australia using semi-structured cognitive interviews. Participants were asked to think aloud when completing the EQ-HWB-9, and three additional positively-framed questions from the EQ-HWB. Thematic analysis was used, where transcripts were inductively coded to capture new insights and deductively coded as guided by the EQ-HWB-9 questions. RESULTS: Nineteen carers completed interviews. Carers used two main retrieval strategies: supplementing recent observations with key events or self-report occurring slightly outside the recall period, and drawing on the past to contextualise recent behaviours. All participants used their own observations and opinions of the person with dementia (“proxy–proxy perspective”). When questions about the person’s feelings were difficult to answer, carers relied on various observable behaviours as indirect indicators. Nearly half also imagined how the person might answer (“proxy–patient perspective”), even if they sometimes disagreed with the person’s self-assessment. CONCLUSION: The 7-day recall period for the EQ-HWB-9 was more consistently adhered to for observable aspects of health. Wording changes may be needed to support consistent use, particularly for less observable items. Challenges in perspective-taking and adherence were also identified, suggesting areas to address in instructions.
Quality of life during electronic patient-reported outcome (ePRO) monitoring in thoracic surgery patients: a pilot randomized controlled trial.
Cox CE, Deal AM, Wang M … +16 more , Williams B, Gentry AL, Hoch C, Schlusser C, Shrestha S, Boisson-Walsh A, Kurz C, Happ M, Bright A, Hill L, Coleman J, Long J, Haithcock B, Bennett AV, Basch E, Mody GN
Qual Life Res · 2026 Apr · PMID 41920389 · Full text
PURPOSE: Patients undergoing thoracic surgery experience high symptom burden and negative impacts on postoperative health-related quality of life (HRQOL). Remote symptom monitoring using electronic patient-reported outco...
PURPOSE: Patients undergoing thoracic surgery experience high symptom burden and negative impacts on postoperative health-related quality of life (HRQOL). Remote symptom monitoring using electronic patient-reported outcomes (ePROs) in other patient populations improves HRQOL but may increase workload for surgical providers. We evaluated the feasibility of ePRO use by thoracic surgery patients and providers as well as its impact on HRQOL. METHODS: In this single center randomized controlled trial, thoracic surgery patients were assigned to either ePROs with alerts to their providers for severe symptoms or ePROs for measurement only, for 90 days after hospital discharge. Primary outcomes were feasibility (measured by patient survey completion) and change in postoperative HRQOL, assessed using the EORTC QLQ-C30 and LC-13 instruments. We also assessed symptom burden, health care utilization during ePRO use, and provider management of alerts. RESULTS: A total of 113 patients planned for thoracic surgery were randomized to ePROs with alerts (n = 56) vs. ePRO measurement (n = 57) only. Of these, 99 participants were discharged from the hospital using postoperative ePROs. More surveys were completed in the alerting arm (61.9% vs. 52.8%, p<0.001, h=0.18). HRQOL at 2 months (social and role function, summary score) was improved in the ePRO with alerts arm, and emotional function at 12 months was improved in the ePRO measurement only arm. CONCLUSION: Remote symptom monitoring using ePROs with alerts is feasible for thoracic surgery patients and providers. Short-term HRQOL may be improved with ePROs with alerts. The downstream impact of ePRO use on long-term HRQOL and other outcomes requires further study. TRIAL REGISTRATION: https://Clinicaltrials.gov NCT04342260.
Psychometric validation of a cognition and social participation bolt-on for the EQ-5D-5L in SARS-CoV-2 infected German healthcare workers.
Buchholz I, Lüdtke L, Härter M … +1 more , Janssen MFB
Qual Life Res · 2026 Apr · PMID 41920383 · Full text
PURPOSE: COVID-19 can result in long-term impairments, including cognitive difficulties and restrictions in social participation, which may not be fully captured by EQ-5D-5L. This study examined whether adding cognition...
PURPOSE: COVID-19 can result in long-term impairments, including cognitive difficulties and restrictions in social participation, which may not be fully captured by EQ-5D-5L. This study examined whether adding cognition (CO) and social participation (SP) bolt-ons improves EQ-5D-5L’s measurement properties in German healthcare workers (HCW) with SARS-CoV-2 infection. METHODS: N = 3335 HCW with self-reported occupational COVID-19 completed an online survey including EQ-5D-5L, two candidate bolt-ons (CO, SP), and validated self-report instruments (e.g., Post-COVID Syndrome PCS-Score, PHQ-4, PTSD screening, SSD-12, WAI, WHODAS). Psychometric analyses covered distributional characteristics (response pattern, missing values, ceiling), construct (convergent and divergent) validity, known-groups validity, and explanatory power. RESULTS: Both bolt-ons showed acceptable distributional properties; adding CO modestly reduced overall ceiling effect, while adding SP resulted in negligible change (‘11111’ = 18.8% vs. ‘111111’CO = 14.8% and ‘111111’SP = 17.8%). Construct validity was supported by expected correlation patterns, i.e. rCO,PCS-Score = 0.63, rSP, WHODAS = 0.71. Known-groups validity improved with the inclusion of bolt-ons, as reflected by higher or comparable relative efficiency (RE) compared with EQ-5D-5L in most group comparisons for CO (11/13, RE = 0.94–1.22), whereas this was observed in approximately half of group comparisons for SP (6/13, RE = 0.89–1.18). In multivariate models, adding CO to the EQ-5D-5L resulted in a small to moderate increase in explained variance for PCS symptom severity (Δ adj. R2CO = 0.04–0.07), whereas adding SP had a negligible impact (Δ adj. R2SP ≤ 0.01). CONCLUSION: While CO improved ceiling, construct, and known-groups validity of the EQ-5D-5L in SARS-CoV-2 infected HCW, the added value of SP appeared limited.
Measuring health-related quality of life in infants and toddlers: conceptual challenges and proposed recommendations.
Powell PA, Rencz F, Carlton J … +6 more , Schieskow S, Peasgood T, Mulhern B, Finch A, Herdman M, Verstraete J
Qual Life Res · 2026 Apr · PMID 41920378 · Full text
PURPOSE: Measuring health-related quality of life (HRQoL) in the very young (i.e., infants and toddlers, aged 0–47 months) presents unique conceptual and methodological challenges. As infants and toddlers cannot reliably...
PURPOSE: Measuring health-related quality of life (HRQoL) in the very young (i.e., infants and toddlers, aged 0–47 months) presents unique conceptual and methodological challenges. As infants and toddlers cannot reliably self-report their HRQoL, observer inference is necessary. This raises questions about which concepts should be included; how to manage proxy reporting; and how to capture genuine variations in HRQoL, not changes in development or assessment. This commentary outlines six key challenges in measuring infant and toddler HRQoL and details eight proposed recommendations for HRQoL researchers. METHODS: The piece draws on insights from the EuroQol Toddler and Infant Populations (EQ-TIPS) project, aimed to develop a generic preference-weighted measure (PWM) of HRQoL for infants and children, but has broader applicability to HRQoL measurement in the very young. Key issues addressed include: (i) what concepts to measure; (ii) how to identify which concepts matter to very young children; (iii) managing proxy reporting and reducing bias; (iv) accounting for rapid developmental changes; (v) managing continuity across life-course instruments; and (vi) separating child HRQoL from family spillover effects. RESULTS: Proposed recommendations include greater consensus on a core HRQoL model; prioritising primary caregiver perspectives; justifying and operationalising observable aspects of subjective HRQoL; careful design to capture genuine HRQoL, not developmental change or caregiver spillover; and developing measurement systems to prioritise age-based sensitivity or comparability across time. CONCLUSION: These recommendations offer a foundation for future consensus-building and research to refine and harmonise best practices in infant and toddler HRQoL measurement, particularly for use in health technology assessment.
Norwegian translation and adaptation of the INT4 version of the Adult Social Care Outcomes Toolkit (ASCOT).
Sjetne IS, Smith N, Towers AM … +5 more , Renolen Å, Magnussen SF, Burrell LV, Veenstra M, Sogstad MKR
Qual Life Res · 2026 Apr · PMID 41920368 · Full text
PURPOSE: In Norway, no standardized instrument has been available to measure outcomes of long-term care (LTC) from the perspective of the service users. The Adult Social Care Outcomes Toolkit (ASCOT), developed in Englan...
PURPOSE: In Norway, no standardized instrument has been available to measure outcomes of long-term care (LTC) from the perspective of the service users. The Adult Social Care Outcomes Toolkit (ASCOT), developed in England, was designed for this purpose. ASCOT is a suite of tools designed that assess outcomes from the perspective of different groups receiving LTC. This article describes the translation and cultural adaptation of the four-level interview version (INT4) for use in Norwegian LTC services. METHODS: The translation followed international guidelines and included two forward translations and two back translations conducted by a professional translation company. These were followed by discussions involving the translators, the original developers, and the Norwegian in-country expert team to ensure conceptual equivalence with the original. Cognitive debriefing interviews were conducted with LTC users. The introduction and instructions for interviewers and respondents were adapted to fit the Norwegian context. RESULTS: The initial translations were overly literal. Based on extensive team discussions and findings from cognitive interviews, the text was revised to achieve fluent, simple, everyday Norwegian language in the instructions, questions and response options. Any superfluous text was removed. CONCLUSION: The Norwegian version of the ASCOT INT4 is a carefully translated and culturally adapted instrument that closely reflects the constructs of the original English version.
Quality of life, care needs and priorities in atrial fibrillation: the impact of number and patterns of comorbidities.
Trevisan C, Ravelli A, Rivera-Caravaca JM … +12 more , Zanforlini BM, Sergi G, Dan GA, Dan AR, Roldán V, Marín Ortuño F, Johnsen SP, Petrovic M, Vetrano DL, Leo DG, Lane DA, AFFIRMO consortium
Qual Life Res · 2026 Apr · PMID 41920359 · Full text
PURPOSE: Atrial fibrillation (AF) often coexists with multiple chronic conditions, worsening health-related quality of life (HRQoL) and increasing the burden on patients and caregivers. While multimorbidity is known to w...
PURPOSE: Atrial fibrillation (AF) often coexists with multiple chronic conditions, worsening health-related quality of life (HRQoL) and increasing the burden on patients and caregivers. While multimorbidity is known to worsen clinical outcomes, the role of distinct comorbidity patterns in shaping patients' experience remains unclear. This cross-sectional study assessed whether the number and patterns of comorbidities differentially affect HRQoL, care needs, and priorities of AF patients and caregivers. METHODS: An online survey on living with AF and multimorbidity was disseminated between May 2022 and January 2023 in the UK, Italy, Spain, Romania, and Denmark. The analysis included 633 AF patients (46.9% females, median age 73 years) and 198 caregivers (26.8% females, median age 57 years). Exposure variables were the number and patterns (derived through latent class analysis) of comorbidities. Outcomes included HRQoL (measured with the EQ-5D-3L), perceived management problems and health priorities assessed through a structured questionnaire developed ad hoc for the survey. RESULTS: Three patterns emerged: unspecific (65.5%), diabetes-kidney-liver (18.2%), and complex (16.4%). More comorbidities and belonging to the complex pattern were associated with worse HRQoL, mainly due to limited mobility, dependency, and pain. Main issues were managing multiple diseases, medi ions, and appointments. The diabetes-kidney-liver group prioritized improving quality of life (OR=3.08, 95%CI:1.68-6.00) and living longer (OR=1.67, 95%CI:1.05-2.64), while pain relief was a distinct priority in the complex pattern (OR=2.32, 95%CI:1.38-3.86). CONCLUSION: Both number and combinations of AF comorbidities shape patients' and caregivers' experiences. Considering comorbidity profiles can help define targeted care plans and caregiver support initiatives.
Assessing the impact of neoadjuvant chemotherapy and chemoradiotherapy on quality of life during treatment in esophageal cancer: a systematic review and meta-analysis.
Deng L, Geng N, Wang N … +5 more , Gu P, Liu Y, Yang R, Feng Y, Ma H
Qual Life Res · 2026 Apr · PMID 41920274 · Publisher ↗
PURPOSE: This study aimed to assess how neoadjuvant chemotherapy (nCT) and neoadjuvant chemoradiotherapy (nCRT) affect the quality of life (QoL) of patients with locally advanced esophageal cancer at various time points...
PURPOSE: This study aimed to assess how neoadjuvant chemotherapy (nCT) and neoadjuvant chemoradiotherapy (nCRT) affect the quality of life (QoL) of patients with locally advanced esophageal cancer at various time points before and after surgery. Rather than a direct head-to-head comparison, this study sought to characterize and contrast within-group QoL change patterns associated with each treatment strategy. METHODS: We conducted a systematic review and meta-analysis in accordance with PRISMA guidelines. Four databases (PubMed, Embase, Cochrane Library, and Web of Science) were searched for studies reporting perioperative QoL outcomes in patients receiving nCT or nCRT. QoL data were extracted from validated instruments, including the EORTC QLQ-C30, QLQ-OES18, FACT-E, and Spitzer Index. A random-effects model was used to calculate pooled mean differences (MDs) with 95% confidence intervals (CIs). Sensitivity analyses were conducted for outcomes with high heterogeneity (I2 > 50%). RESULTS: Fifteen studies met the inclusion criteria: 8 involving nCT and 12 involving nCRT. nCT was associated with improvements in symptom domains such as pain and appetite loss, with minimal impact on global functioning. In contrast, nCRT led to significant QoL deterioration before surgery and at 3 months postoperatively, with increases in fatigue, dyspnea, and diarrhea. Most QoL measures returned to baseline within 12 months postoperatively, although some domains showed persistent impairments. CONCLUSION: Distinct perioperative QoL trajectories were observed following nCT and nCRT. nCT was generally associated with reduced preoperative symptom burden and limited functional decline, whereas nCRT was associated with transient but clinically relevant short-term QoL deterioration, followed by partial recovery within one year. These findings describe treatment-specific QoL patterns rather than direct comparative effects, underscoring the importance of routine QoL monitoring to support individualized perioperative care.
Suboptimal quality of female oncofertility care is associated with lowered quality of life.
van den Berg M, Lusing F, Beerendonk CCM … +8 more , Kaal SEJ, Mandigers CMPW, Schuurman TN, Tol J, Tromp JM, van der Vorst MJDL, Braat DDM, Hermens RPMG
Qual Life Res · 2026 Apr · PMID 41920270 · Full text
PURPOSE: Female adolescent and young adult cancer patients should be informed about infertility risks due to cancer treatment. However, quality of female oncofertility care is far from optimal. It is not known whether th...
PURPOSE: Female adolescent and young adult cancer patients should be informed about infertility risks due to cancer treatment. However, quality of female oncofertility care is far from optimal. It is not known whether this suboptimal quality of care is associated with patient-reported outcome measures (PROMs), particularly quality of life, decisional conflict, regret, and reproductive concerns. METHODS: A multicenter cross-sectional survey study was conducted to measure the association between quality of oncofertility care and PROMs in female cancer survivors from six hospitals across the Netherlands. Quality indicators were used to assess quality of care, and validated scales to assess PROMs. Quality indicator and PROM scores were calculated, and possible associated determinants were analyzed by T-tests and multilevel multivariate analyses. RESULTS: Female cancer survivors (N = 121) received suboptimal quality of care with 8 out of 11 quality indicators scoring < 90% adherence. When survivors were informed about infertility risks, were offered fertility preservation counseling, and received digital/written information, their physical quality of life was highest (51.05 vs. 44.05), and levels of decisional conflict (24.55 vs. 48.22) and regret (12.50 vs. 28.67) were lowest, compared to non-adherence. Quality of life and decision regret were significantly influenced by relationship status, strength of wish to conceive, and type of cancer. CONCLUSION: Receiving high-quality integrated female oncofertility care is associated with an improved quality of life, and with less decisional conflict and regret in female cancer survivors. As quality of oncofertility care is suboptimal, tailored strategies should be developed to guideline-specific barriers, to improve quality of care and, most importantly, quality of life in female cancer survivors.
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