Quality Of Life Research[JOURNAL]
Sun
200 papers
Stakeholder perspectives on the use of patient-reported outcome measures in colorectal cancer survivorship care in general practice: qualitative study using interviews.
Kim B, Tracy M, Ostroff C … +5 more , Mahadeva J, Marker J, White K, Willcock S, Rutherford C
Qual Life Res · 2026 Jan · PMID 41563597 · Full text
PURPOSE: To explore perspectives of colorectal cancer (CRC) survivors and general practitioners (GPs) regarding the potential use of Patient-Reported Outcome Measures (PROMs) in survivorship care. METHODS: We conducted a...
PURPOSE: To explore perspectives of colorectal cancer (CRC) survivors and general practitioners (GPs) regarding the potential use of Patient-Reported Outcome Measures (PROMs) in survivorship care. METHODS: We conducted a qualitative study with semi-structured interviews with CRC survivors and GPs to explore their opinions on the potential utility, feasibility, and preferred method of PROMs utilization in their care/clinical practice. Thematic analysis was conducted using a qualitative descriptive approach. RESULTS: Three themes emerged from 13 CRC survivor interviews:(1) potential of PROMs as tools for revealing and monitoring hidden CRC sequelae, (2) benefits and drawbacks to be weighed when using PROMs in CRC survivorship care, and (3) practical strategies to enhance the utility of PROMs in CRC survivorship care. Two themes emerged from four GP interviews:(1) current uses of PROM in general practice may indicate potential applications in CRC survivorship care, and (2) implementation of PROMs in CRC survivorship care needs to consider resource-limited general practice environments. CRC survivors had positive views about using PROMs in their care, believing they could be a valuable tool to enhance monitoring of treatment sequelae/and communication with their GP. GPs also acknowledged the potential utility but emphasized that for CRC-specific PROMs to be implemented, they first needed to demonstrate tangible improvements to the current way that CRC treatment sequelae were monitored and managed, considering already resource-limited Australian general practice settings. CONCLUSIONS: Future research assessing the feasibility of integrating CRC-specific PROMs into general practice settings requires a particular focus on the resource implications within these settings
Sex differences in health-related quality of life after renal cell carcinoma surgery: a population-based study in Sweden.
Bonn SE, Westman B, Schelin MEC … +3 more , Hedman C, Ljungberg B, Rosenblad AK
Qual Life Res · 2026 Jan · PMID 41533299 · Full text
PURPOSE: To examine sex differences in health-related quality of life (HRQoL) among patients surgically treated for renal cell carcinoma (RCC) in Sweden, utilizing data from the National Swedish Kidney Cancer Register (N...
PURPOSE: To examine sex differences in health-related quality of life (HRQoL) among patients surgically treated for renal cell carcinoma (RCC) in Sweden, utilizing data from the National Swedish Kidney Cancer Register (NSKCR). METHODS: In this study of 4658 surgically treated RCC patients, data on HRQoL, clinical, demographic, and socioeconomic characteristics were retrieved from the NSKCR for patients undergoing surgical treatment between January 2016, and April 2024. HRQoL was measured using the 14- and 19-item versions of the Functional Assessment of Cancer Therapy - Kidney Symptom Index (FKSI-14/19) instrument six months after surgery. The association between sex and HRQoL was estimated using linear regression. Separate analyses were performed for the FKSI-14 and FKSI-19 total scores and underlying domains. RESULTS: In total, 3086 (66.3%) men and 1572 (33.7%) women were included. After adjusting for clinical, demographic, and socioeconomic characteristics, male sex was significantly associated with higher HRQoL. Specifically, men had higher scores, indicating fewer symptoms, for physical and mental symptoms according to FKSI-14 (P < 0.001), and for physical (P < 0.001) and emotional (P < 0.001) disease-related symptoms, as well as treatment side effects (P < 0.022), according to FKSI-19. Total HRQoL was significantly higher in men, according to both the FKSI-14 (P < 0.001) and the FKSI-19 (P < 0.001). CONCLUSIONS: HRQoL differed significantly between men and women six months after surgery, with men reporting higher HRQoL, even after accounting for clinical, demographic, and socioeconomic factors. Healthcare professionals should be aware of the risk of lower HRQoL among female patients.
Development of a patient-centered conceptual disease model in Ring 14 syndrome: a patient-centered model of lived experience.
SanInocencio C, Demarest S, Weitzman S … +3 more , Thomas H, Chandran I, DeWoody Y
Qual Life Res · 2026 Jan · PMID 41533279 · Publisher ↗
PURPOSE: Ring 14 Syndrome is a rare genetic disorder caused by an anomaly in the 14th chromosome that often leads to intractable epilepsy, moderate to severe intellectual disabilities, slow growth, ocular abnormalities,...
PURPOSE: Ring 14 Syndrome is a rare genetic disorder caused by an anomaly in the 14th chromosome that often leads to intractable epilepsy, moderate to severe intellectual disabilities, slow growth, ocular abnormalities, and more. The presentation and severity of symptoms can greatly vary, making Ring 14 syndrome a complex condition to understand, manage, and treat. Conceptual disease models, also known as disease concept models, provide a formal framework based on the lived experience of patients and families that helps to describe the functional and quality of life impacts of a disease across various domains using qualitative methods. METHODS: To inform the development of a conceptual disease model on Ring 14 Syndrome, 17 caregivers representing 12 patients with Ring 14 Syndrome participated in semi-structured interviews over the course of four months. Data were analyzed using a mix of deductive and inductive inquiry through NVivo Software. Concepts were grouped into domains of patient symptoms and caregiver symptoms, with patient symptoms consisting of two sub-domains: functional impacts (which included cognitive impacts, physical impacts, behavioral impacts, and social-emotional-expressive impacts) and quality of life impacts (which included ADLs, medication side effects, and school/social/community). Caregiver impacts were categorized by mental health, family and social aspects, and medical care. RESULTS: Patient impacts listed under the cognitive and physical categories align closely with patient impacts referenced in the medical literature. However, impacts listed under the patient quality of life domain as well as the caregiver domain are inadequately represented in the literature, suggesting that the patient perspective has previously been neglected in the medical literature on Ring 14 Syndrome. Further, the numerous mental and physical health impacts on caregivers, grouped with the negative quality of life impacts on Ring 14 patients themselves, warrants further attention, as both have profound effects on health-related quality of life. Finally, while many of the impacts listed in the conceptual disease model may be considered negative aspects of the disorder, there were also positive impacts identified (such as happy demeanor, resilience, and social support) by the community as well.
Moving forward, leaving the patients behind? A multilevel assessment framework for evaluating patient-centred, integrated care quality.
Cassidy S, Lintvedt O, Odeh F … +2 more , Granja C, Solvoll T
Qual Life Res · 2026 Jan · PMID 41533255 · Full text
PURPOSE: Many current care assessment frameworks prioritise clinical and organisational outcomes over patient perspectives. This study aimed to identify gaps in existing patient-centred assessment methods and to develop...
PURPOSE: Many current care assessment frameworks prioritise clinical and organisational outcomes over patient perspectives. This study aimed to identify gaps in existing patient-centred assessment methods and to develop a multilevel framework aligning quality evaluation with patient-defined priorities across macro (policy), meso (organisational), and micro (individual) levels, and technological levels. METHODS: We used a primarily qualitative design, conducting a literature review of patient-centred integrated care assessment studies and integrating these findings with a longitudinal case study that examined how the patient's perspectives were documented across multiple health information systems, synthesising evidence on existing practices with insights into how patient perspectives are integrated and represented for a comprehensive understanding. RESULTS: In total, 32 studies were included. The review revealed ongoing misalignment between systemic evaluation practices and patient-defined outcomes, particularly for individuals with complex physical and mental health needs. Minimal patient involvement in developing evaluation criteria reflected a disconnect between policy-level targets and individual patient well-being. This misalignment was echoed in the case study, which underscored that personal goals and non-clinical needs were often unrecorded, highlighting the gap between evaluation metrics and genuinely patient-centred care. CONCLUSION: Integrated care quality assessment remains misaligned with patient-defined outcomes. We propose Patient-Reported Integrated Measures (PRIMs) as a conceptual contribution. PRIMs complement existing Patient-Reported Outcome Measures (PROM) and Patient-Reported Experience Measures (PREM) by capturing multidimensional outcomes that matter to patients and ensuring evaluation aligns with their goals. Integrating PRIMs into health information systems and research agendas can realign care evaluation with evolving patient priorities, thereby reducing the risk of leaving patients behind in future healthcare reforms.
Quality of life trajectories in breast cancer survivors up to one year after treatment: a prospective study in a lower-middle-income country.
Selmouni F, Bendahhou K, Muwonge R … +11 more , Sauvaget C, Abahssain H, Lucas E, Mimouni H, Ismaili R, Bidar S, Benkaddour FZ, Abousselham L, Chami Y, Belakhal L, Basu P
Qual Life Res · 2026 Jan · PMID 41533246 · Publisher ↗
PURPOSE: Measuring quality of life (QoL) in breast cancer survivors is a key 'patient-reported outcome' to optimize survivorship care, however, evidence from low- and middle-income countries is limited. Our prospective s...
PURPOSE: Measuring quality of life (QoL) in breast cancer survivors is a key 'patient-reported outcome' to optimize survivorship care, however, evidence from low- and middle-income countries is limited. Our prospective study aimed to identify QoL trajectory patterns and their determinants in Moroccan breast cancer patients from diagnosis up to one year post-treatment. METHODS: We recruited 830 stage I-III breast cancer patients registered at the two major oncology centres. QoL was assessed using validated EORTC QLQ-C30 and QLQ-BR23 questionnaires at pre-treatment, after treatment completion, and at one year post-treatment. Trajectory patterns were identified through group-based modelling. RESULTS: Three distinct QoL trajectories were identified: consistently high (36.1%), moderate (56.4%), and low (7.5%). Stage III disease (OR 6.63, 95% CI 2.35-18.71) was significantly associated with patients in the consistently low trajectory group. Being married (OR 0.40, 95% CI 0.19-0.84), receiving treatment at comprehensive cancer centers (OR 0.12, 95% CI: 0.05-0.27), and management according to international guidelines on breast cancer care (OR 0.44, 95% CI 0.24-0.80) reduced the likelihood of being in the consistently low trajectory group. Younger patients (aged < 50) were also more likely to be in the low trajectory pattern. While global health status improved over time (74.8-83.7, p = 0.018), multiple domains showed deterioration, particularly in the low trajectory group. Financial hardship persisted in all groups despite health insurance coverage. CONCLUSION: We identified three distinct QoL trajectories. Advanced stage of disease increased risk of poor QoL outcomes, while older age, treatment at comprehensive cancer centers, and protocol-appropriate management were protective determinants. Many women survive breast cancer, but we know little about how their quality-of-life changes during and after treatment, especially in countries with fewer resources like Morocco. Our study followed breast cancer patients for over a year after treatment to understand these changes. Our objective was to identify different patterns in how quality of life changes over time for breast cancer survivors and determine what factors influence these patterns. We found three distinct patterns: some women maintained good quality of life (36%), others had moderate levels (56%), and a smaller group consistently struggled with poor quality of life outcomes (7.5%). Younger patients and those with more advanced cancer were more likely to have poor quality of life outcomes. Receiving treatment according to internationally accepted guidelines at comprehensive cancer centers that provide cancer services - from diagnosis through surgery, chemotherapy, radiotherapy, and follow-up all in one location significantly improved quality of life outcomes. Despite most patients having health insurance, many faced financial difficulties throughout treatment and recovery periods. Our findings help identify which patients need extra support and show that comprehensive care centers and appropriate treatment improve quality of life for breast cancer survivors in Morocco.
Caregiver-reported quality of life in individuals with developmental and epileptic encephalopathy and other severe neurodevelopmental encephalopathies.
Ludwig NN, Licari MK, Wojnaroski M … +6 more , Conecker G, Hecker J, Hommer R, Muzyczka K, Jacoby P, Downs J
Qual Life Res · 2026 Jan · PMID 41533235 · Full text
PURPOSE: Information on factors contributing to quality of life (QOL) informs meaningful patient-centred care. We evaluated factors influencing QOL in individuals with developmental and epileptic encephalopathy (DEE) and...
PURPOSE: Information on factors contributing to quality of life (QOL) informs meaningful patient-centred care. We evaluated factors influencing QOL in individuals with developmental and epileptic encephalopathy (DEE) and other severe neurodevelopmental encephalopathy conditions using hypothesis-free regression tree analysis. METHODS: A questionnaire was completed by 242 caregivers of individuals two years or older. QOL was measured using the Quality of Life Inventory-Disability (QI-Disability). Independent variables described health, functional abilities and daily activities. The R package rpart was used to build the regression trees to explore the most influential factors associated with QOL. RESULTS: Median age was 8.8y (interquartile range 4.6-14.9 y). Mean total QI-Disability score was 60.2 ± 14.1 out of a total possible score of 100. The subgroup with the lowest QOL scores comprised individuals with low (raw score < 4) cognition scores measured with the Developmental Profile-4 (n = 52, mean score 46.4) whereas higher QOL scores were achieved by individuals with higher cognition scores and capacity to engage actively when using a touchscreen (n = 123, mean score 67.5). CONCLUSION: Regression tree analysis suggests that cognition and use of touchscreens were important factors for QOL. Findings suggest small neurodevelopmental and functional gains may meaningfully improve quality of life for individuals with severe neurodevelopmental encephalopathy.
The association between loneliness and quality of life in cancer survivors: All of Us research program.
Lee H, Ng DQ, Lee D … +3 more , Baeker Bispo J, Jemal A, Islami F
Qual Life Res · 2026 Jan · PMID 41533225 · Publisher ↗
INTRODUCTION: Cancer survivors may experience loneliness, which can impair the capacity to self-regulate lifestyle behaviors, induce systemic inflammation, and deteriorate mental and physical health. Previous studies hav...
INTRODUCTION: Cancer survivors may experience loneliness, which can impair the capacity to self-regulate lifestyle behaviors, induce systemic inflammation, and deteriorate mental and physical health. Previous studies have found an association between loneliness and health outcomes in the general population, but few studies have examined health effects of loneliness among cancer survivors and its differential effects by sociodemographic characteristics. METHODS: In a cross-sectional analysis of All of Us Research program data, we examined the association between loneliness (defined using the UCLA-3 items loneliness scale) and overall quality of life and four other health outcomes among cancer survivors aged ≥ 18 years in the United States (N = 17,367). RESULTS: Lonely cancer survivors were more likely to have fair/poor overall quality of life, severe pain, severe fatigue, and fair/poor physical and mental health compared to non-lonely cancer survivors, controlling for multiple health behaviors and sociodemographic factors. Models stratified by sociodemographic characteristics generally showed similar results, but differences existed between some age, sex, and living arrangement subgroups. For example, the association between loneliness and fair/poor mental health was stronger among older survivors (≥ 65 years, AOR = 5.30; 95% CI = 4.30-6.54) than younger survivors (18-39 years, AOR = 3.07; 95% CI = 1.95-4.85); p for difference < 0.05. The association between loneliness and severe fatigue was stronger among survivors living alone (AOR = 3.15; 95% CI = 2.33-4.25) than survivors living with others (AOR = 2.16; 95% CI = 1.81-2.59); p < 0.05. CONCLUSIONS: Loneliness generally showed adverse association with all evaluated health outcomes, but the magnitude of associations varied between certain subpopulations. Results of this study suggest the need for screening and monitoring of loneliness among cancer survivors.
From questionnaires to single items: independent use of a walking measure in patients after thoracic surgery.
Zhang J, Mao P, Li J … +11 more , Lei C, Tian X, Lei J, Tan X, Li M, Zhou W, Nie Y, Liao J, Dai W, Wei X, Shi Q
Qual Life Res · 2026 Jan · PMID 41511686 · Publisher ↗
PURPOSE: Regular and flexible assessments of patients' physical status remain a significant challenge in clinical care and treatment. Whether measurement items in established Patient-reported outcome (PRO) questionnaires...
PURPOSE: Regular and flexible assessments of patients' physical status remain a significant challenge in clinical care and treatment. Whether measurement items in established Patient-reported outcome (PRO) questionnaires can be used independently to assess physical status remains unclear. This study aimed to evaluate the clinimetric validity of the independent use of a single-item walking measure. METHODS: Participants were recruited from a prospective cohort of patients undergoing lung surgery. On postoperative days 1 and 2 (POD 1 and 2), the patients' physical condition was assessed using the Perioperative Symptom Assessment for Lung surgery (PSA-Lung) and the single-item walking measure (SI-walking) derived from these questionnaire. A one-hour washout period separated the assessments. The objective measure of Timed Up and Go Test (TUGT) was performed on POD2. RESULTS: Of the 214 patients, 181 and 117 completed PSA-Lung and SI-walking on POD1 and POD2, respectively. The mean SI-walking score was higher than the mean PSA-Lung walking (MI-walking) score (4.44 ± 2.38 vs 3.64 ± 2.66, P < 0.001, Cohen's d effect size [ES] = 0.26). TUGT was completed by 111 patients with an average time of 15.17 ± 4.01 s. TUGT had a greater correlation with SI-walking (R = 0.61, P < 0.001) than with MI-walking (R = 0.31, P = 0.001) scores. ES regarding changes in walking function between POD1 and POD2 were higher with SI-walking (5.14 ± 2.37 vs 3.35 ± 1.97, P < 0.001, ES = 0.81) than with MI-walking (4.15 ± 2.77 vs 2.85 ± 2.28, P < 0.001, ES = 0.50). SI-walking (P = 0.002) was better than MI-walking (P = 0.116) in distinguishing hospitalization length. CONCLUSIONS: The SI-walking scale demonstrates validity for measuring physical status. The independent use of a single-item walking measure from an established PRO questionnaire is valid in patients after thoracic surgery.
Developing the EuroQol toddler and infant populations (EQ-TIPS) instrument: qualitative analysis of expert views on content validity and conceptual challenges.
Verstraete J, Bidgood E, Dalziel K … +5 more , Devlin N, Morrow BM, Jelsma J, Schieskow S, Herdman M
Qual Life Res · 2026 Jan · PMID 41511684 · Full text
PURPOSE: The EuroQol Toddler and Infant Populations (EQ-TIPS) is an experimental generic measure of Health-Related Quality of Life (HRQoL), for which preference weights are planned. Expert consultation aimed to (a) revie...
PURPOSE: The EuroQol Toddler and Infant Populations (EQ-TIPS) is an experimental generic measure of Health-Related Quality of Life (HRQoL), for which preference weights are planned. Expert consultation aimed to (a) review EQ-TIPS V2.0 wording and content, (b) discuss possible uses for the new measure and challenges with instrument development. METHODS: Semi-structured online focus group consultations were conducted with three expert groups: (1) EuroQol member experts in preference-weighted questionnaire development and use, (2) paediatric health and development practitioners, and (3) paediatric HRQoL instrument developers. Discussions were audio-recorded, transcribed verbatim and thematically analysed. RESULTS: Experts thought EQ-TIPS would be useful in informing health research and clinical/economic decision-making, due to limited availability of preference-weighted measures for this age group. EQ-TIPS wording was generally considered appropriate, easy to follow and understand. Overall, the six EQ-TIPS dimensions included in version 2.0 were considered to provide an adequate representation of HRQoL in this age group. However, there was substantial agreement that sleep and emotions, not included in the version discussed, could be relevant. All groups further suggested that including dimension examples, rather than referring to ‘age-appropriate behaviour’, could enhance proxy comprehension. Experts emphasised that future iterations of the descriptive system should ensure dimensions remain relevant to children’s HRQoL, rather than measuring the impact on the proxy respondent. CONCLUSION: Overall, content in EQ-TIPS version 2.0 was considered appropriate for the target age group, but some rewording was suggested, as well as testing of additional content to ensure adequate coverage of the construct measured. Future work should include caregivers from diverse geographical, socio-economic and cultural settings.
Enhancing quality of life through tailored interventions for men living with HIV.
Pham TQ, Wu Q, Pan C … +7 more , Ha L, Bui TC, Sujan MSH, Schensul SL, Shrestha R, Le NT, Ha T
Qual Life Res · 2026 Jan · PMID 41511671 · Publisher ↗
Although antiretroviral therapy (ART) has been highly effective in controlling HIV, many people with HIV (PWH) continue to experience poor quality of life (QoL), especially in resource-limited settings. This secondary an...
Although antiretroviral therapy (ART) has been highly effective in controlling HIV, many people with HIV (PWH) continue to experience poor quality of life (QoL), especially in resource-limited settings. This secondary analysis of a randomized clinical trial examined the impact of sequenced multilevel interventions on QoL among 940 men living with HIV who use alcohol in Mumbai, India. Participants were assigned to one of three intervention sequences—individual counseling (IC), group intervention (GI), and collective advocacy (CA) across three sites, a pilot site receiving all three interventions simultaneously, or a control site receiving standard care. QoL was measured using the EQ-5D-3 L instrument at baseline, 9, 18, and 24 months. Linear mixed models were used to assess the effect of intervention sequences on QoL over time, adjusting for sociodemographic and clinical covariates. The GI–CA–IC sequence significantly improved QoL compared to the control group (β = 0.04, 95% CI 0.02 to 0.06, p < 0.001). Conversely, the IC–GI–CA sequence showed a significant decline in QoL(β = − 0.02, 95% CI − 0.04 to − 0.01, p = 0.009). Pairwise comparisons confirmed the advantage of the GI–CA–IC sequence. Initiating with group sessions, followed by collective advocacy, and concluding with individual counseling may lead to greater improvements in QoL than other sequences. These results have significant implications for tailoring multilevel HIV interventions to optimize outcomes in local contexts. However, further research is needed to confirm these findings and explore the mechanisms underlying sequence effects.Trial registration: ClinicalTrials.gov NCT03746457, registered on November 19, 2018 (retrospectively registered).
Estimating the minimal important change of single-item measures using the adjusted predictive modeling method or the longitudinal confirmatory factor analysis method.
Terluin B, Pua YH, Fromy P … +3 more , Trigg A, van der Zwaard B, Bjorner JB
Qual Life Res · 2026 Jan · PMID 41511670 · Full text
PURPOSE: Recently developed minimal important change (MIC) estimation methods recover the mean individual MIC in a sample. These methods are the adjusted predictive modeling (APM) method and the longitudinal confirmatory...
PURPOSE: Recently developed minimal important change (MIC) estimation methods recover the mean individual MIC in a sample. These methods are the adjusted predictive modeling (APM) method and the longitudinal confirmatory factor analysis (LCFA) method. Both methods require LCFA of patient-reported outcome measure (PROM) data. In the APM-method, LCFA is used to estimate the reliability of the transition ratings, whereas in the LCFA-method, LCFA is used to estimate the latent MIC. However, LCFA cannot be performed if the PROM is a single item measure (SIM). Adding an auxiliary variable, that is correlated with the PROM, to the LCFA-model may be a solution. We developed three different LCFA-models in which an auxiliary variable is included. In this simulation study, we assessed the performance of the APM- and LCFA-methods to recover the true MIC of an SIM. We applied both methods to a real dataset in which the SIM was a numeric rating scale for pain. METHODS: We simulated 15,552 samples, varying in 11 parameters, and estimated the APM-based and LCFA-based MICs. RESULTS: The APM-method performed well, except if the proportion improved was high or low, and the present state bias (PSB) was high. The LCFA-method performed well, irrespective of the proportion improved and the PSB. In the real data, the LCFA-based MIC was 17 (on a 100-point scale), whereas the estimated APM-based MIC was 4 points higher, probably due to a high proportion improved and a high PSB. CONCLUSION: The MIC of an SIM can be accurately estimated using an auxiliary PROM.
Measuring health spillover effects in household members of adolescents and elderly individuals with health issues in China.
Geng J, Xie S, Wu J
Qual Life Res · 2026 Jan · PMID 41511666 · Publisher ↗
OBJECTIVE: The spillover effects of health issues are widespread, may be especially for vulnerable groups who are more dependent on their families. While the importance of spillovers in resource allocation decisions is i...
OBJECTIVE: The spillover effects of health issues are widespread, may be especially for vulnerable groups who are more dependent on their families. While the importance of spillovers in resource allocation decisions is increasingly recognized, the empirical evidence in China is generally limited. This study aimed to estimate the health spillover effects among household members of adolescents (8-17 years) and elderly individuals (≥ 60 years) with health issues in China. METHODS: Data were obtained from the 2023 Health Service Survey conducted in Tianjin, one of China's four municipalities. Health issues included diagnosed chronic disease, illness within two weeks, unintentional injuries or any hospitalizations in the past year. The absolute spillover effects were evaluated by comparing EQ-5D-5L utility values between household members exposed/unexposed to adolescent/elder individuals with health issues. The relative spillover effects were estimated using the ordinary least square regression (OLS) model. RESULTS: More household members exposed to adolescents with health issues reported anxiety/depression problems than those unexposed (8.6% vs. 3.1%, p < 0.05), though no significant utility difference was found (adjusted Coef. = 0.055, p > 0.1, SE = 0.291). Exposure to elderly individuals with health issues was associated with increased reports of pain/discomfort (20.7% vs. 14.7%, p < 0.05) and anxiety/depression (8.8% vs. 4.6%, p < 0.05), with a significant spillover effect of 0.044 (p < 0.05, SE = 0.022). CONCLUSIONS: Focusing on adolescents and the elderly with health issues, this study offers population-based evidence of health spillover effects within Chinese households. These findings support the existence of spillover effects in the Chinese context and offer benchmark estimates to inform public health policy.
Exploring the lived experiences of women with metastatic breast cancer and their HRQoL questionnaire preferences: a qualitative study.
Tolstrup LK, Vogsen M, Hildebrandt MG … +3 more , Sørensen RW, Maguire R, Dieperink KB
Qual Life Res · 2026 Jan · PMID 41511649 · Full text
BACKGROUND: Managing health-related quality of life (HRQoL) in patients with metastatic breast cancer (MBC) is crucial due to the physical, emotional, and social burdens of disease and its treatments. This study examined...
BACKGROUND: Managing health-related quality of life (HRQoL) in patients with metastatic breast cancer (MBC) is crucial due to the physical, emotional, and social burdens of disease and its treatments. This study examined the HRQoL of patients with MBC and compared the patients' perspectives of two validated tools-the Functional Assessment of Cancer Therapy - Breast (FACT-B) and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire QLQ-C30 with its breast cancer-specific module QLQ-BR42 (EORTC) to determine which is most suitable for assessing HRQoL in patients with MBC. METHODS: A qualitative study design was used to explore patients' HRQoL and their perspectives on the two questionnaires, FACT-B versus EORTC, focusing on what matters most to the patients. Individual interviews were conducted between September and December 2024 at the Department of Oncology, Odense University Hospital, Denmark. Thematic analysis was selected to extract and analyze data. RESULTS: Fifteen women with MBC were included. Median age was 62 years (range 28-79), and the median duration of the interviews was 21 min (range 13-32 min). The analysis identified three main themes: (1) Living with metastatic disease, when incurable cancer is a life condition, (2) Design of the questionnaires, 3) Content of the questionnaires. Participants described impaired HRQoL, as they were hindered in living an everyday life, felt lonely at times, engaged in protective buffering, and lived in fear of the next scan. Overall, the participants found the design of the two questionnaires acceptable; neither was preferred over the other. However, regarding the content, the participants expressed a clear preference for FACT-B over the EORTC, primarily due to its greater relevance to their current situation, reflecting everyday life and need for support. CONCLUSIONS: Participants in this study reported impaired HRQoL, marked by disrupted daily life, loneliness, protective buffering, and scanxiety. They preferred the FACT-B over the EORTC questionnaire for measuring HRQoL because of its focus on personal and emotional aspects, which reflected their lived experiences. However, further research is warranted to validate these findings in more diverse populations in the metastatic breast cancer context.
Associations between socioeconomic status, dietary habits and health-related quality of life among children in rural riverside communities: the mediation role of food insecurity.
de Lima Pereira L, Herkrath FJ, Siqueira JH … +4 more , do Carmo Leal M, de Abreu FM, Lopes AF, Vettore MV
Qual Life Res · 2026 Jan · PMID 41511646 · Full text
PURPOSE: This study investigated the relationships between socioeconomic status (SES), housing conditions, BMI z-score, food availability and consumption, food insecurity, and health-related quality of life (HRQoL) in sc...
PURPOSE: This study investigated the relationships between socioeconomic status (SES), housing conditions, BMI z-score, food availability and consumption, food insecurity, and health-related quality of life (HRQoL) in schoolchildren aged 5 to 10 years living in rural riverine communities. METHODS: This school-based cross-sectional study included 128 parent-child dyads living in rural riverside in the city of Coari, Amazonas, Brazil. SES, housing conditions, household food availability, consumption of ultra-processed foods and food insecurity data were gathered from children's parents. Children's nutritional status (BMI z-scores), diet quality and HRQoL [Kiddo-KINDL] were also assessed. Direct and indirect relationships between variables were examined through structural equation modelling. RESULTS: Food insecurity was directly linked to poorer HRQoL. Worse socioeconomic status, lower availability of food at household, and poorer child's diet quality were directly linked to food insecurity. Greater household food availability, higher children's BMI z-score, and worse diet quality were directly linked to higher socioeconomic status. Availability of food at home was directly associated with higher consumption of ultra-processed foods, which, in turn, was directly associated with poorer diet quality. Food insecurity mediated the indirect associations of socioeconomic status, availability of food at household, consumption of ultra-processed foods, and diet quality with HRQoL. CONCLUSION: The present findings elucidate the complex pathways between socioeconomic inequalities, food access and availability, diet quality, and children's quality of life.
Health-related quality of life in chronic kidney disease patients in low- and lower-middle income countries: a systematic review and meta-analysis.
Muxunov A, Almazan J, Kalinina D … +7 more , Kuanshaliyeva Z, Gaipov A, Makhadiyeva D, Kabibulatova A, Madikenova M, Nabiyev A, Sarria-Santamera A
Qual Life Res · 2026 Jan · PMID 41511643 · Full text
PURPOSE: Health-related quality of life (HRQoL) is a key outcome in chronic kidney disease (CKD), yet data from low- and lower-middle income countries (LLMICs) are underrepresented. The study systematically reviewed and...
PURPOSE: Health-related quality of life (HRQoL) is a key outcome in chronic kidney disease (CKD), yet data from low- and lower-middle income countries (LLMICs) are underrepresented. The study systematically reviewed and meta-analyzed HRQoL among CKD patients in LLMICs by disease stage and treatment modality. METHODS: Registered in PROSPERO (CRD420251016382), the review searched PubMed, Ovid MEDLINE, Scopus, and Web of Science (January 1, 2000 - March 28, 2025) for studies including adults with CKD stages 1-5, on dialysis, or post-transplant, using validated HRQoL instruments. Two reviewers independently screened studies, extracted data, and assessed quality using Joanna Briggs Institute tools. Pooled mean scores were estimated using random-effects meta-analysis, with meta-regression and Egger's test exploring heterogeneity and small-study effects. RESULTS: A total of 123 studies (n = 24,007) from 22 countries were included. Pooled SF-36 scores were 42.8 (95% CI 39.4-46.3) for Physical Component Summary (PCS) and 47.7 (43.8-51.6) for Mental Component Summary (MCS) in early CKD, versus 36.9 (34.0-39.9) and 42.5 (38.9-46.1), respectively, in late CKD. Transplant recipients showed higher HRQoL than dialysis patients across WHOQOL-BREF domains. The EQ-5D index declined from 0.706 (0.589-0.823) in CKD 1-3 to 0.486 (0.357-0.614) in dialysis. CONCLUSION: CKD patients in LLMICs experience substantial deterioration in quality of life, particularly at advanced stages. Compared to high-income settings, HRQoL scores in LLMICs remain markedly lower, revealing major global inequities. This first region-specific synthesis provides benchmarks for HRQoL across CKD stages and underscores the need for earlier intervention and broader access to transplantation.
Lived experience of spontaneous preterm birth following spontaneous preterm labor: the primary caregiver's perspective.
Gargon E, Roberts A, Grant L … +5 more , Sharp R, Croft DJ, Bahmanyar ER, Rood KM, Patel VP
Qual Life Res · 2026 Jan · PMID 41511616 · Full text
PURPOSE: This study aimed to address an evidentiary gap by exploring caregivers' lived experiences of spontaneous preterm birth (sPTB) resulting from spontaneous preterm labor (sPTL) and characterize the most relevant he...
PURPOSE: This study aimed to address an evidentiary gap by exploring caregivers' lived experiences of spontaneous preterm birth (sPTB) resulting from spontaneous preterm labor (sPTL) and characterize the most relevant health-related quality of life (HRQoL) impacts. Insights were used to develop a conceptual model. METHODS: Qualitative concept elicitation interviews were conducted with 24 primary caregivers in the United States, diagnosed with sPTB between 23 and 36 weeks' gestational age (GA) resulting from sPTL. Interview transcripts were thematically analyzed. RESULTS: During pregnancy, caregivers commonly reported physical and emotional changes, and limited awareness of sPTL. Many did not recognize their signs and symptoms of sPTL onset as indicative of labor, and described a lack of choice regarding sPTL treatment. Caregivers consistently described neonatal outcomes as central to maternal HRQoL. Those who gave birth at lower GAs typically reported more frequent short-term and longer-term neonatal health or developmental problems, longer NICU stays, and worse NICU experiences. Maternal HRQoL impacts persisted well beyond the neonatal period, with emotional wellbeing remaining the most impacted domain in both the short-term (from delivery to 28 days following caregivers' estimated date of delivery [EDD]) and longer-term (from 28 days to two years post-EDD). CONCLUSION: This study centralizes the caregiver perspective, which is imperative to improving maternal outcomes. Caregivers' experiences (particularly of neonatal outcomes such as length of NICU stay) are integral to shaping maternal HRQoL. Increased awareness of sPTL signs and symptoms, and enhanced sPTL management strategies, are needed to improve both maternal and neonatal outcomes.
Utility-weighted modified rankin scale scores in patients with ischemic stroke: a multicenter observational study.
Irie F, Matsumoto K, Matsuo R … +5 more , Wakisaka Y, Ago T, Kitazono T, Kamouchi M, onbehalf of the Fukuoka Stroke Registry Investigators
Qual Life Res · 2026 Jan · PMID 41511569 · Full text
PURPOSE: This study assessed patient-reported health-related quality of life (QOL) in a real-world cohort of patients with ischemic stroke and estimated utility-weighted modified Rankin Scale (UW-mRS) scores. METHODS: We...
PURPOSE: This study assessed patient-reported health-related quality of life (QOL) in a real-world cohort of patients with ischemic stroke and estimated utility-weighted modified Rankin Scale (UW-mRS) scores. METHODS: We included 1452 patients with ischemic stroke (median age: 75 [67-83] years; 41.0% female) from a multicenter hospital-based stroke registry in Japan. QOL was evaluated using the EQ-5D-5L with Japanese-specific utility values. Both EQ-5D utility values and mRS scores were assessed after completion of acute treatment. UW-mRS scores were estimated using ordinary least squares (OLS) and Tobit regression models. RESULTS: The mean (SD) EQ-5D utility value was 0.68 (0.27). Higher mRS scores were associated with greater severity and frequency of problems across EQ-5D domains, with a marked decline observed between mRS scores 3 and 4. UW-mRS scores estimated by OLS were: mRS 0: 0.90, mRS 1: 0.85, mRS 2: 0.74, mRS 3: 0.62, mRS 4: 0.41, and mRS 5: 0.28. The Tobit model yielded slightly higher values for mRS 1-3. UW-mRS estimates remained largely consistent across other regression models (fractional logit/probit, beta regression, and two-part models). However, UW-mRS values differed between early (≤ 14 days from onset) and late (> 14 days) assessments and varied considerably when utility values were calculated using tariffs from other countries or with the EQ-5D-3L crosswalk. CONCLUSION: In this real-world, consecutive cohort of hospitalized Japanese patients with ischemic stroke, utility values were estimated using the EQ-5D-5L, and the UW-mRS was characterized as a practical tool for deriving utility values from mRS scores.
Validity of EQ-5D-5L breathing and cognition bolt-ons in non-hospitalized patients after COVID-19.
Stavem K, Garratt AM
Qual Life Res · 2026 Jan · PMID 41511567 · Full text
PURPOSE: The EQ-5D has been criticized for lacking dimensions for breathing and cognition. In acute COVID-19 and Long COVID, breathing problems and cognitive complaints are common. This study evaluated the inclusion of E...
PURPOSE: The EQ-5D has been criticized for lacking dimensions for breathing and cognition. In acute COVID-19 and Long COVID, breathing problems and cognitive complaints are common. This study evaluated the inclusion of EQ-5D-5L (bolt-on) items that assess these dimensions. METHODS: In a follow-up of community-based non-hospitalized patients with COVID-19 in 2020 (n = 450), we used respiratory and cognitive bolt-on items alongside other questionnaires about 30 months later (n = 220). We assessed data quality and construct validity for the bolt-ons, including comparison with concurrently used instruments' domain and item scores. Bolt-on scores were correlated with pulmonary function tests and tablet-based cognitive tests about 1 year earlier. Finally, we assessed the contribution of the bolt-ons to variability of the EQ VAS. RESULTS: Most patients had none or slight problems with breathing and cognition. The breathing problems bolt-on had an 8% lower ceiling effect, but otherwise a similar response distribution to the mMRC. Cognition bolt-on and four DSQ-SF item scores relating to frequency and severity were similar, except 2-13% higher ceiling effects for the former. The breathing bolt-on had a rank correlation of 0.54 with mMRC scores and higher correlations with Dyspnoea-12 scale scores. EQ-5D-5L dimensions explained 54% of variation in EQ VAS scores; the breathing bolt-on contributed a further 2%, but the cognition bolt-on contributed very little. CONCLUSION: The results support the validity of the two bolt-ons in follow-up of non-hospitalized patients after COVID-19. Adding items of respiratory and cognitive symptoms may enhance the EQ-5D's appropriateness in respiratory and cognitive research and clinical practice.
Home-based transcranial direct current stimulation (tDCS) for bipolar depression: effects on quality of life and functioning-an open-label study.
Rezaei H, Woodham RD, Ghazi-Noori AR … +5 more , Bramon E, Bauer M, Young AH, Fu CHY, Ritter P
Qual Life Res · 2026 Jan · PMID 41511563 · Full text
PURPOSE: Individuals with bipolar disorder often experience reduced quality of life (QoL). Transcranial direct current stimulation (tDCS) is a promising non-invasive treatment for bipolar depression that is portable, saf...
PURPOSE: Individuals with bipolar disorder often experience reduced quality of life (QoL). Transcranial direct current stimulation (tDCS) is a promising non-invasive treatment for bipolar depression that is portable, safe, and suitable for use at home. We developed a home-based tDCS protocol with real-time remote supervision and examined its effect on QoL in bipolar depression. METHODS: In an open-label design, 44 participants (31 women) with bipolar depression of at least a moderate severity received 21 sessions of home-based tDCS (2 mA, 30 min, F3 anode/F4 cathode) over 6 weeks, with a follow-up visit conducted 5 months from baseline. QoL was assessed using the quality of life enjoyment and satisfaction questionnaire (Q-LES-Q) at baseline, week 2, end of treatment, and follow-up session. Baseline and post treatment scores were compared with healthy control participants (28 adults; 17 women). RESULTS: At baseline and at the end of treatment, bipolar participants showed a significantly lower Q-LES-Q score than healthy controls (p < 0.001). Within the bipolar group, there was a significant improvement in total Q-LES-Q scores (p < 0.001) and across multiple domains by week 6 and remained elevated at follow-up. Changes in Q-LES-Q were no longer significant after adjustment for depressive symptoms. CONCLUSION: A 6-week course of supervised home-based tDCS was associated with significant QoL improvements in bipolar depression, which appeared to be closely linked to reduction in depressive symptoms. Randomized, sham-controlled trials are warranted to clarify the specific contribution of tDCS to improve QoL in bipolar depression.
Analysing the impact of complex multimorbidity on health-related quality of life.
Walsh S, Gillespie P, Hobbins A … +7 more , O'Neill C, McCarthy C, Moriarty F, Clyne B, Boland F, Smith SM, on behalf the SPPiRE Study Research Team
Qual Life Res · 2026 Jan · PMID 41511562 · Full text
PURPOSE: This paper presents independent associations between complex multimorbidity and health-related quality of life using the EQ-5D-5L instruments. Identifying the decrements in utility associated with complex multim...
PURPOSE: This paper presents independent associations between complex multimorbidity and health-related quality of life using the EQ-5D-5L instruments. Identifying the decrements in utility associated with complex multimorbidity is of value for economic evaluation and health technology assessment. METHODS: Data from the population normative dataset from the Irish EQ-5D-5L study were combined with baseline data from the SPPiRE (Supporting Prescribing in Older Adults with Multimorbidity in Irish Primary Care) randomised controlled trial. The trial included an Irish cohort aged 65+ with complex multimorbidity. For the analysis, the estimation sample consisted of 364 individuals from the SPPiRE complex multimorbidity sample, along with 116 individuals aged 65+ from the general population who did not report having any serious illness. A multivariate ordered probit regression model was used to estimate the independent associations between complex multimorbidity and the five EQ-5D-5L dimensions. RESULTS: Complex multimorbidity was independently associated with a lower probability of reporting no problems for all five EQ-5D-5L dimensions, and a higher probability of reporting the most extreme response for all five dimensions. The loss in health utility associated with complex multimorbidity was estimated to be − 0.506 (95% CI − 0.567, − 0.445) relative to those aged 65 years and over with no serious illness. The negative health impact was most pronounced for pain/discomfort and anxiety/depression. CONCLUSION: This study reported the associative impacts of complex multimorbidity for all EQ-5D-5L dimensions and for health utility overall. The findings highlight the potential impact on health-related quality of life of interventions that can prevent or delay the onset and progression of multimorbidity.
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