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Background: Despite being a widely used generic measure of health-related quality of life worldwide, there is limited evidence on the psychometric properties of the EuroQoL Five-dimensions five level (EQ-5D) among cervical cancer patients in Ethiopia. Objective: To evaluate psychometric properties of the Amharic version of EQ-5D among Ethiopian cervical cancer patients. Methods: A longitudinal survey of cervical cancer patients receiving treatment at two Ethiopian tertiary care facilities was conducted from March 2022 to July 2023. Participants completed the EQ-5D and the European Organization for Research and Therapy of Cancer (EORTC QLQ-C30) at baseline and after three months on treatment. Effect size and standardized response mean were used to assess responsiveness. Anchor-based and distribution-based methods were used to calculate the minimal clinically important difference (MCID). Minimal detectable change (MDC) ratios were computed at the individual and group levels. Statistical significance was determined at p < 0.05. Results: Three hundred seventy-one patients completed the survey at baseline and follow-up with a mean age of 49.72 (10.80) years. The majority (268,73%) of the patients had early-stage cancer. The EQ-5D index and EQ VAS scores respectively improved by 0.04 and 7.0 post-treatment.The physical domains of EORTC QLQ-C30 had showed high correlation with physical dimensions of EQ-5D (r > 0.6) and the instrument showed good discriminate validity between patients with different health states. The effect size ranged between − 0.12 and 0.60 for the EQ-5D index value and − 0.12 to 1.16 for the EQ VAS, indicating small to large responsiveness. The average (range) MCID value of the EQ-5D index was 0.10–0.15. The findings showed that MCID to MDC ratios at the group level were more clinically meaningful than the individual level. Conclusion: The EQ-5D effectively detected changes and discriminate patients with different levels of health. While group-level MCIDs were established in this study, further studies are recommended to prove its usefulness at the individual-level. [ABSTRACT FROM AUTHOR]

Background: Myositis is a rare disease associated with impaired health-related quality of life. A study evaluating the effectiveness of an intervention to improve the quality of life and well-being of myositis patients is presented. Methods: All myositis patients in a health district were contacted. Thirty-four eligible patients were randomly assigned to the experimental (n = 17) or control (n = 17) group. A psychoeducational intervention of 5 100-min sessions focusing on the disease as related to daily life was conducted only in experimental patients. Several reliable tools to measure quality of life and well-being were administered twice, before and after the intervention, to both groups. Results: In the experimental group, post-test scores were higher than pre-test in quality of life, well-being, and self-efficacy to manage the disease. Improvements were more evident in the experimental group than controls in 70% of the variables studied. Specifically, sedentariness decreased and satisfaction with social relationships increased in the post-test evaluation to a greater degree in the experimental group than in controls. Conclusions: This randomized controlled trial on a representative sample of myositis patients in an extensive population provides evidence indicating the effectiveness of a psychoeducational intervention for improving HRQoL, well-being, and self-efficacy to manage the disease. Trial registration: NCT06300983. [ABSTRACT FROM AUTHOR]

Background: Frailty is strongly correlated with mortality in intensive care unit patients, yet routine screening among intensive care patients is rarely performed. The aim of this study is to assess frailty and health‐related quality of life (HRQoL) in patients before intensive care admission and to compare this with outcomes after 3 and 12‐months. The Clinical Frailty Scale and EQ‐5D‐5L will be used to assess frailty and HRQoL, respectively. Methods: This is an ongoing, prospective observational study including patients from five Norwegian ICU's. Inclusion criteria are patients aged ≥65 years requiring invasive mechanical ventilation for ≥24 h. The Clinical Frailty Scale and EQ‐5D‐5L are administered at baseline (before critical illness) and at 3‐ and 12‐months post‐inclusion. Additional data collected includes patient characteristics, ICU treatment details, illness severity and mortality. The EQ‐5D‐5L will be compared to Norwegian population norms and assessed for measurement properties. Results: Inclusion started July 2022 and will be stopped at 350 patients. The study will be completed in 2025. Conclusion: The study will assess the feasibility and measurement properties of the Clinical Frailty Scale and EQ‐5D‐5L in ICU survivors by telephone at long‐term follow‐up study and will give additional information on the frailty and HRQoL of intensive care survivors. Clinical trial registration: The study is registered in ClinicalTrials.gov NCT06012942. Protocol version 2.7.1, 19.05.2023. [ABSTRACT FROM AUTHOR]

Purpose: To examine health-related quality of life (HRQoL) and supportive care needs among young adult (YA) cancer survivors up to 3 years post-diagnosis. Methods: A national cohort of individuals diagnosed at 18–39 years with breast, cervical, ovarian, or testicular cancer, lymphoma or brain tumor was approached with surveys at 1.5 (n = 1010, response rate 67%) and 3 (n = 722) years post-diagnosis. HRQoL was measured using the EORTC QLQ-C30. Scores were dichotomized using cut-off scores to predict supportive care needs in the Supportive Care Needs Survey-Long Form 59 (SCNS-LF59). Swedish cancer quality registers provided clinical data. Factors predicting need of support at 1.5 and 3 years post-diagnosis were identified using logistic regression. Results: HRQoL improvements over time were trivial to small. At both time points, a majority of respondents rated HRQoL levels indicating supportive care needs. At 1.5 years post-diagnosis, the risk of having support needs was lower among survivors with testicular cancer (compared to lymphoma) or university-level education, and higher among those on treatment (predominantly endocrine therapy). At 3 years post-diagnosis, when controlling for previous HRQoL scores, most correlations persisted, and poor self-rated household economy and chronic health conditions were additionally associated with supportive care needs. Conclusion: A majority of YAs diagnosed with cancer rate HRQoL at levels indicating support needs up to 3 years post-diagnosis. Testicular cancer survivors are at lower risk of having support needs. Concurrent health conditions and poor finances are linked to lower HRQoL. More efforts are needed to provide adequate, age-appropriate support to YA cancer survivors. [ABSTRACT FROM AUTHOR]

Context: Physical activity (PA) interventions improve well-being and positive mental health in children and adolescents, but the results of previous systematic reviews included participants with chronic medical conditions and did not accurately assess the multidimensional nature of health-related quality of life (HRQoL). Objective: The aims of this meta-analysis were to (1) evaluate the effects of PA interventions on several domains of HRQoL in healthy <18-year-olds and (2) examine the effectiveness of interventions on HRQoL according to whether they were successful in increasing PA, the type of intervention delivered, and the duration of the intervention. Data Sources: PubMed (Medline), EMBASE, the Cochrane Library, SCIELO, SPORTDiscus, and PEDro databases were systematically searched from inception to September 30, 2022. Study Selection: Experimental studies that examined the effectiveness of PA interventions on HRQoL participants aged <18 years. Study Design: Systematic review with meta-analysis and meta-regression. Level of Evidence: Level 1. Methods: Random-effects models were used to calculate pooled effect size (ES) for total HRQoL score and its dimensions. Subgroup analyses were conducted to examine the effect of PA program characteristics. Results: A total of 17 studies were included. Pooled ES (95% CI) estimations were as follows: 0.179 (0.045, 0.002) for total HRQoL score, 0.192 (0.077, 0.306) for physical well-being, 0.158 (0.080, 0.237) for psychological well-being, 0.118 (0.044, 0.192) for autonomy and parent relation, 0.135 (0.043, 0.227) for social support and peers, and 0.129 (-0.013, 0.270) for school environment. Subgroup analyses suggested there were no differences in the effectiveness of the interventions by category of PA increase or by type and duration of intervention. Conclusion: Exercise interventions are an effective strategy for improving overall HRQoL and its most significant domains in children and adolescents. [ABSTRACT FROM AUTHOR]

Importance: Describing the characteristics and sources of health state utility values and reporting practice in the literature of cost-utility analyses facilitates an understanding of the level of the transparency, validity, and generalizability of cost-utility analyses. Improving the quality of reporting will support investigators in describing the incremental value of emerging glaucoma interventions. Objective: To describe the state of practice among published glaucoma cost-utility analysis studies, focusing on valuation of health and the quality of reporting. Evidence review: We searched several databases including Medline, CINHAL, Embase, Web of Science, Scopus, Biosis previews, the Health Economic Evaluations Database, and the NHS Economic Evaluation Database (NHS EED). We included full-text, English, published cost-utility analyses of glaucoma interventions with quality-adjusted life years (QALYs) as the primary outcome measure to calculate incremental cost-utility ratios. Excluded studies were non-English language, reviews, editorials, protocols, or other types of economic studies (cost–benefit, cost-minimization, cost-effectiveness). Study characteristics, operational definitions of glaucoma health states and health state utilities were extracted. The original source of the health utility was reviewed to determine the scale of measurement and the source of preference weighting. Items from the Systematic Review of Utilities for Cost-Effectiveness (SpRUCE checklist) were used to assess the reporting and quality of health utilities in glaucoma CUA. Findings: 43 CUAs were included, with 11 unique sources of health utilities. A wide range of health utilities for the same Hodapp-Parrish-Anderson glaucoma health states were reported; ocular hypertension (0.84–0.95), mild (0.68–0.94), moderate (0.57–0.92), advanced (0.58–0.88), severe/blind (0.46–0.76), and bilateral blindness (0.26–0.5). Most studies reported the basis for using health utilities (34, 79%) and any assumptions or adjustments applied to the health utilities (22, 51%). Few studies reported a framework for assessing the relevance of health utilities to a decision context (8, 19%). Even fewer (3, 7%) applied a systematic search strategy to identify health utilities and used a structured assessment of quality for inclusion. Overall, reporting has not improved over time. Conclusions and relevance: This review describes that few CUAs describe important rationale for using health state utility values. Including additional details on the search, appraisal, selection, and inclusion process of health utility values improves transparency, generalizability and supports the assessment of the validity of study conclusions. Future investigations should aim to use health utilities on the same scale of measurement across health states and consider the source and relevance to the decision context/purpose of conducting that cost-utility study. [ABSTRACT FROM AUTHOR]

Objective: As the ageing process in China further accelerates and the average life expectancy increases, chronic disease prevalence and multimorbidity rates are constantly rising, especially among elderly individuals. However, few previous studies have explored the impacts of chronic diseases and multimorbidity on health-related quality of life (HRQoL). This study aimed to investigate this association among community-dwelling elderly individuals in China. Methods: A cross-sectional study was conducted in communities in three cities (Suzhou, Qingdao, and Guangzhou). The basic characteristics, chronic diseases and HRQoL of participants were collected, and HRQoL was measured by the EuroQol 5-Dimensions 3-Level version (EQ-5D-3L). Logistic regression, Tobit regression and generalized linear models were used to assess the impacts of chronic diseases and multimorbidity on HRQoL. Results: Approximately 83.2 percent of the 1,218 respondents had chronic conditions, with 30 percent having multimorbidity. After controlling for sociodemographic and health behaviour factors, patients with stroke were more likely to report problems in all five dimensions of the EQ-5D and had a lower EQ-5D utility index (UI) (b = -0.342) than patients with other chronic conditions. Patients with chronic pulmonary obstruction had a lower EuroQol Visual Analog Scale (EQ-VAS) (b = -11.169) than patients with other chronic conditions. Furthermore, patients with multimorbidity had worse HRQoL (P < 0.001). Conclusions: Both chronic condition probability and multimorbidity rates were high among Chinese community-dwelling elderly individuals. Different disease types had varying degrees of impact on HRQoL, and patients with multimorbidity had worse HRQoL. This study proposes that the government enhance the quality of life of community-dwelling elderly individuals with multimorbidity by establishing long-term care insurance and expanding comprehensive community-based home health care services. [ABSTRACT FROM AUTHOR]

Purpose: Urolithiasis significantly affects patient quality of life, yet the global standard of care predominantly focuses on achieving a stone free status, often ignoring patient reported outcomes. Currently, there are no specific measures available to assess the quality of life in the Polish population suffering from kidney stones. Therefore, this study aimed to develop and validate the Polish version of the Wisconsin Stone Quality of Life Questionnaire. Methods: The translation of WISQOL was carried out in accordance with the best available guidelines. Patients treated for kidney stones at a tertiary centre were recruited and completed both POL-WISQOL and SF36 questionnaires. Comprehensive analyses were conducted to assess internal consistency, inter-item and inter-domain correlations, as well as convergent and construct validity. Additionally, test-retest reliability was evaluated to ensure the accuracy and stability of the findings. Results: A total of 102 participants fully completed both questionnaires and were included in the analysis. The translated survey demonstrated excellent internal consistency (Cronbach's coefficient 0.967) and significant convergent validity (Spearman's correlation = 0.847, p < 0.001). Furthermore, an ANOVA with Tukey's post hoc analysis revealed a significant decline in WISQOL scores between symptomatic and asymptomatic individuals, thereby confirming tool's construct validity. Conclusion: POL-WISQoL turned out to be a valid disease specific health related quality of life measuring tool. Its widespread utilisation has the potential to shift the standard of care towards patient centered outcomes. [ABSTRACT FROM AUTHOR]

Background: Evidence on long COVID symptom clustering patterns among patients with COVID-19 is limited. We summarized long COVID symptoms in clusters defined by number of symptoms co-occurring together, and we assessed Health-Related Quality of Life (HQRoL), Work Productivity and Activity Impairment (WPAI) outcomes across these clusters over time. We assessed associations between the clusters and BNT162b2 vaccination status. Methods: A prospective longitudinal patient-reported outcomes (PRO) study recruited laboratory-confirmed symptomatic COVID-19 patients seeking testing from a national retail pharmacy. Long COVID-19 symptoms were self-reported by participants at 4-week, 3-month and 6-month surveys. Patient classes identified via latent class analysis (LCA) with long COVID-19 symptoms were simplified into clusters based on number of symptoms. HRQoL and WPAI outcomes were collected using EQ-ED-5L and WPAI: GH questionnaires. Mixed models for repeated measures analyses were conducted to examine associations between exposure groups and outcomes. Results: The study included 328 participants that were segmented into three groups of long COVID-19 symptoms based on LCA and then simplified by the number of symptoms (Cluster 1 low, <2; Cluster 2 moderate, 2–6; and Cluster 3 high, >6 symptoms). The number of long COVID-19 symptoms was negatively associated with HRQoL and WPAI, whereby participants with high symptom burden (>6 symptoms) had the lowest HRQoL and WPAI scores assessed by absenteeism, presenteeism, work productivity loss, activity impairment, and hours worked metrics. Compared with those unvaccinated and not up-to-date with COVID-19 vaccination, subjects boosted with BNT162b2 consistently reported less symptom burden during the follow-up, regardless of their symptom-based cluster. Conclusion: Three distinct patient clusters based on frequency of long COVID symptoms experienced different HRQoL and WPAI outcomes over 6 months. The cluster with more concomitant symptoms experienced greater burden than the others. Participants up-to-date with BNT162b2 reported lower symptom burden across all clusters and timeframes. Clinical trial registration: Clinicaltrials.gov NCT05160636. [ABSTRACT FROM AUTHOR]

Background: Measurement of medication adherence and health-related quality of life is extremely important when planning different health policies. Drug therapy and adherence to medication are critical to prevent complications of hypertension, especially in countries like Nepal, where hypertension is one of the most prevalent diseases. However, this has not been studied in Nepal. This study, hence, aimed to explore medication adherence, factors affecting medication adherence, health-related quality of life, and the correlation between medication adherence and health-related quality of life in hypertensive patients visiting tertiary care health facilities in Lalitpur district of Nepal. Methodology: This quantitative cross-sectional study was conducted among 380 hypertensive patients at KIST Medical College and Teaching Hospital, Lalitpur, Nepal. The Nepali version of the European Quality of Life tool EQ-5D-5L and the Hill-Bone Compliance to High Blood Pressure Therapy Scale (HBCTS) were used. Intergroup differences in medication adherence, the EQ-5D index and EQ-VAS scores were assessed for statistical significance using either the Mann–Whitney or Kruskal–Wallis tests for numerical data. Spearman correlation coefficient was used to identify the relationship among medication adherence, EQ-5D-5L index values, and EQ-VAS scores. Results: The mean treatment score was 22.43 ± 4.12. Age, sex, and occupation were significant factors that affected treatment adherence. The EQ-5D score was 0.72 with age, sex, income, and educational status as significant factors and marital status as an insignificant factor. A slightly negative correlation was found between the total treatment adherence score and the EQ-5D index. Conclusion: The treatment adherence of patients to antihypertensive therapy was suboptimal, which could affect the outcome of therapy. Better treatment adherence was correlated with a better health-related quality of life. Hence, both health-care providers and patients should make efforts to increase treatment adherence to attain better HRQOL. [ABSTRACT FROM AUTHOR]

Introduction: Loneliness, social inactivity, and social isolation are intertwined concepts. When assessed separately, they indicate poor well-being, adverse health effects, and increased mortality. Studies exploring overlapping and comparing the prognosis of these concepts are scarce. We investigated (1) overlapping of concepts of loneliness, social inactivity, and social isolation, (2) characteristics of groups: group 0 (not lonely, socially inactive, or socially isolated), group 1 (lonely), group 2 (not lonely but socially inactive and/or socially isolated), and (3) the health-related quality of life (HRQoL), psychological well-being (PWB), and 3.6-year mortality of these groups. Methods: The home-dwelling older adults (n = 989; 75 y+) of the Helsinki Aging Study in 2019–2022 completing all required questionnaires were assessed. Group 0 included 494, group 1 included 280, and group 2 included 215 participants. Variables studied were demographics, diagnoses, mobility, physical functioning (Barthel index), and cognition (Mini-Mental State Examination). Outcomes were HRQoL (15D) and PWB. Mortality was retrieved from central registers. Results: Half of the sample was lonely, socially inactive, or socially isolated, but only 2% were simultaneously lonely, socially inactive, and socially isolated. Of lonely participants, 38% were also socially inactive and/or socially isolated. The lonely participants were significantly more often widowed or lived alone and had the lowest HRQoL and poorest PWB compared with the other groups. After adjustments (age, sex, Charlson Comorbidity Index), mortality did not statistically differ between the groups. Conclusion: Loneliness is an independent determinant of poor HRQoL and PWB, and it should be considered separately from social inactivity and social isolation. [ABSTRACT FROM AUTHOR]

Purpose: Combined immunotherapy (ipilimumab + nivolumab) has improved survival in stage IV melanoma patients, making Health-related Quality of Life (HrQoL) crucial due to potential immune-related adverse events (irAEs). Previous studies treated HrQoL as secondary/explorative endpoint, and no specific HrQoL questionnaire for melanoma patients on immune checkpoint inhibitor (ICI) therapy exists. This study aimed to gather specific HrQoL data during combined ICI therapy, tracking changes during and after treatment, and examining associations with gender, irAEs, and treatment response. Methods: 35 melanoma patients (22 males, 13 females) undergoing combined ICI were surveyed using the Short-form 36 questionnaire (SF-36), the Inflammatory Bowel Disease Questionnaire – Deutsch (IBDQ-D), and the distress thermometer (DT). HrQoL was evaluated during treatment, after six months, and at the onset of autoimmune colitis. Results: irAEs occurred in 51.4% of patients, with colitis being the most common (26.1%). 45.7% had progressive disease. SF-36 showed stable HrQoL during treatment and follow-up. Women had worse HrQoL on the physical component scale than men (p = 0.019). Patients with progression showed worse HrQoL over time in physical (p = 0.015) and mental health scales (p = 0.04). IBDQ-D showed constant HrQoL throughout treatment and follow-up. Distress on DT remained constant, with women reporting higher levels of distress. Conclusion: HrQoL remained stable during and after therapy. Female gender and disease progression negatively impacted HrQoL. The development of irAEs was not associated with HrQoL, though this may not apply to severe irAEs like colitis, which were not assessed. [ABSTRACT FROM AUTHOR]

Purpose: Practical considerations precluding health-related quality of life (HRQOL) monitoring in population and clinical research have spawned development of improved items for more brief surveys of frequently measured HRQOL outcomes. The aim of this study was to validate the use of the Quality of Life General (QGEN-8), a shorter 8-item alternative to the longer 36-item short form (SF)-36 Health Survey for measuring the same eight HRQOL domains across groups of adults with varying severity of acute respiratory symptoms, such as cough and sore throat. Methods: National Opinion Research Center (NORC) representative probability (N = 1,648) and supplemental opt-in (N = 5,915) U.S. adult samples were surveyed cross-sectionally online in 2020. Parallel analyses compared QGEN-8 and SF-36 estimates of group means for each of eight matching profile domains and summary physical and mental scores across groups differing in severity of acute symptoms and chronic respiratory conditions using analysis of covariance (ANCOVAs) controlling for socio-demographics and presence of chronic respiratory conditions. Results: In support of discriminant validity, ANCOVA estimates of QGEN-8 means with SF-36 estimates revealed the same patterns of declining HRQOL with the presence and increasing severity of symptoms and chronic condition severity. Conclusion: QGEN-8® shows satisfactory validity and warrants further testing in cross-sectional and longitudinal population and clinical survey research as a more practical method for estimating group differences in SF-36 profile and summary component HRQOL scores. Summary: Upper respiratory tract infections (URTI) with symptoms such as cough and sore throat are highly prevalent and negatively impact on health-related quality of life (HRQOL). Existing instruments that comprehensively measure HRQOL are lengthy, potentially increasing respondent burden and restricting their use in clinical studies and research. The aim of this study was to evaluate whether eight newly constructed survey items, the QGEN-8®, measure the same HRQOL outcomes as the 36-item SF-36 Health Survey well enough to serve as a more practical alternative for purposes of detecting the physical and mental HRQOL effects on differing severity of acute URTI symptoms, specifically cough and sore throat. The results showed that the QGEN-8® was psychometrically sound and able to differentiate between different levels of URTI symptoms, even in cases where respondents had chronic respiratory conditions. This indicates that the briefer QGEN-8® with 75% shorter response time is able to provide HRQOL measurements comparable to those derived from lengthier instruments thereby lending itself more readily to use in clinical studies and research of URTI symptoms, such as cough and sore throat. [ABSTRACT FROM AUTHOR]

Objectives ANCA-associated vasculitis (AAV) is associated with significant morbidity, fatigue, pain and poor health-related quality of life (HRQoL). This review aims to assess the comprehensiveness of existing patient reported outcome measures (PROMs) used in AAV and identify associations with poorer HRQoL outcomes. Methods A literature review of studies using PROMs, including those labelled HRQoL in people with AAV as a primary or secondary study outcome were screened and reviewed up to July 2023. Quality was assessed using the Critical Appraisal Skills Programme. Results A total of 30 articles were included which utilised 22 different PROM tools, 76.7% (n  = 23) used the SF-36 or a variation as a generic measure of health status and or HRQoL. Two studies developed a disease-specific PROM. The AAV-PRO showed good psychometric properties but potential limitations in capturing all relevant aspects of the disease experience for AAV patients. Factors associated with poorer HRQoL included: neurological and sinonasal involvement, women and younger patients. A total of 86.6% of studies showed no meaningful relationships between the SF-36 and BVAS, VDI or disease duration. Depression and anxiety were common and socioeconomic factors such as unemployment were significantly associated with poorer mental health outcomes. Glucocorticoids were found to be independently associated with worse SF-36 scores. Conclusion Generic PROMs are useful in measuring significant changes but lack sensitivity to specific symptoms and unique AAV-related issues, while existing disease-specific PROMs have some limitations and may not fully capture the AAV patient's perspective on disease and treatment burden. [ABSTRACT FROM AUTHOR]

Background: Heavy menstrual bleeding (HMB) and dysmenorrhea (DM) are common gynecological problems. Objective: To systematically review the needs, quality of life (QOL), and effectiveness of self‐management strategies among young women (12–25 years) with DM or HMB. Search Strategy: Relevant terms were searched through PubMed, EBSCO, Google Scholar, ProQuest, and Ovid between 2010 and 2022. Selection Criteria: Qualitative and quantitative studies published in peer‐reviewed journals, females aged 12–25, exploring DM or HMB, reporting supportive care needs, quality of life, self‐treatment strategies, and/or treatment‐seeking behavior. Data Collection and Analysis: Abstracts were reviewed for eligibility by two researchers. Included studies were extracted and assessed for quality independently by two authors, with discrepancies resolved through consensus or the involvement of a third researcher. Data extracted included study details, menstrual history, symptoms, self‐care strategies, and quality of life. The Joanna Briggs Institute checklists were used for quality assessment. Main Results: The search returned 285 190 studies, of which 55 were eligible for inclusion. Prevalence rates of HMB and DM were in the ranges 4%–63% and 42%–94%, respectively. Over 80% of young women with DM and HMB experienced physical and psychological problems, including pelvic pain, sleep issues, mood disturbance, diarrhea, and nausea. Academic performance and daily activities were severely affected. Most (>62%) named their mothers as their primary source of information, and friends as the secondary source (10%–65%). Few studies explored needs, but they could be inferred and fell under school‐related and social needs. QOL was poorer in those who had DM than those who did not. Pain was the most common issue that drove young women to find treatment. More than 70% used medication to reduce pain. More than half chose home remedies (e.g., heat therapy, massages, herbal tea, hot drinks). No studies provided information about the efficacy and dosage of medication and herbal remedies. Conclusions: HMB and DM have a large impact on daily living, with large areas of unmet need. Limited access to information impairs the management of symptoms and consequent QOL. Synopsis: Heavy menstrual bleeding and dysmenorrhea significantly affect daily life, leaving numerous unmet needs. Insufficient information hinders symptom management, leading to compromised quality of life. [ABSTRACT FROM AUTHOR]

This study assessed the health-related quality of life (HRQo) of women surviving a borderline ovarian tumor (BOT) in comparison with early-stage ovarian cancer survivors treated surgically alone and with a matched cancer-free population. Survivors of BOT and ovarian cancer were invited in two Dutch cross-sectional, population-based studies. Ovarian cancer survivors with tumor stage I who were treated surgically only were included. A random sample from the cancer-free population was matched on sex, age and education to the sample of BOT survivors. The EORTC QLQ-C30 (version 3.0) and the EORTC QLQ-OV28 were completed by the cancer-free population and the BOT and ovarian cancer survivors in study 1 and 2. The Hospital Anxiety and Depression Scale (HADS) was only completed by the cancer-free population and the survivors of BOT and ovarian cancer in study 1. BOT survivors were compared to early-stage ovarian cancer survivors and the general population using linear regression analyses and effect sizes regarding clinical importance. 83 BOT (42%), 88 early-stage ovarian cancer survivors (52%), and 82 women from the general population were included. In most HRQoL domains, BOT survivors were not significantly different from early-stage ovarian cancer survivors and the cancer-free population, except that BOT survivors reported significantly less insomnia than early-stage ovarian cancer survivors and more dyspnea than the cancer-free population (small clinical difference). In general, BOT survivors' HRQoL lies between the HRQoL of early-stage ovarian cancer survivors and of the cancer-free population, but clinical effect sizes between the groups were mostly only trivial. • BOT survivors' HRQoL is between that of ovarian cancer survivors and a cancer-free population. • BOT survivors reported significantly less insomnia than early-stage ovarian cancer survivors. • BOT survivors reported significantly more dyspnea than the cancer-free population. • Other differences in HRQoL were not significantly different and mostly of trivial clinical importance. • Future studies should evaluate the group of women that is premenopausal by diagnosis. [ABSTRACT FROM AUTHOR]

Background: This study aimed to assess the factors influencing health-related quality of life (HRQoL) in patients experiencing adverse drug reactions (ADRs) at a tertiary care public sector hospital. A cross-sectional study was conducted over a period of 18 months, and included both male and female patients aged 18 years and above. Patients who visited the outpatient and inpatient departments with complaints associated with ADRs were included in this study. HRQoL data were collected using the EuroQol—5 Dimension—5 Level (EQ-5D-5L) questionnaire to assess five dimensions of health on a five-level scale. Descriptive statistics, t-tests, and analysis of variance were used to analyze the data. Multivariate regression analysis was performed to identify the potential determinants of HRQoL. Results: A total of 316 patients were included in the study among these participants, of which 54% were female, and 65% were from rural areas. The majority (68%) of the patients had moderately severe ADRs, and 63% of the participants had an income < 2.5 lakh Indian rupees (3009 USD). The mean EQ-5D-5L and EuroQoL Visual Analog Scale (EQ VAS) scores of the study participants were 0.714 and 69.73, respectively. The variables ADR severity, income, and age showed a significant difference (p < 0.05) in HRQoL. Conclusion: This study provides insights into HRQoL among patients with ADRs and identifies the determinants of HRQoL. The findings of this study will contribute to improving patient-centered care and optimizing patient outcomes. [ABSTRACT FROM AUTHOR]

Background: Sickle cell disease (SCD), a genetic blood disorder that affects red blood cells and oxygen delivery to body tissues, is characterized by haemolytic anaemia, pain episodes, fatigue, and end-organ damage with acute and chronic dimensions. Caring for patients with SCD imposes a high burden on informal caregivers. This study aims to capture the impact on health-related quality of life (HRQoL) and economic burden of caregiving for patients with SCD. Methods: Validated instruments of HRQoL (EQ-5D-5L, Carer Quality of Life-7 dimensions [CarerQol-7D]) and productivity (Work Productivity and Activity Impairment Questionnaire: Specific Health Problem [WPAI: SHP]) were administered via a cross-sectional online survey to caregivers in the United Kingdom (UK) and France. Demographics, HRQoL, and economic burden data were analyzed using descriptive statistics. Economic burden was determined using country-specific minimum and average wage values. Subgroup analysis examined caregivers with and without SCD. Results: Sixty-nine caregivers were recruited (UK, 43; France, 26), 83% were female, and 22% had SCD themselves. The mean (SD) caregiver EQ-5D-5L score was 0.66 (0.28) (UK, 0.62; France, 0.73), and the mean CarerQol-7D score was 80.69 (24.40) (UK, 78.72 [25.79]; France, 83.97 [22.01]). Mental health problems were reported in 72% and 70% of caregivers measured using the EQ-5D-5L and CarerQol-7D, respectively. Financial problems were reported by 68% of caregivers, with mean annual minimum wage productivity losses of £4209 and €3485, increasing to £5391 and €9319 for average wages. Sensitivity analysis determined additional HRQoL decrements for caregivers with and without, SCD. Conclusion: Caring for patients with SCD impacts the HRQoL and economic burden of caregivers. Further research to support the complex needs of SCD caregivers is required. Plain English summary: Caregivers play an important role in the lives of the people with sickle cell disease that they care for; however, their mental and physical health and their finances can be affected, particularly if their ability to work is impacted. The extent to which caring for a person with sickle cell disease impacts caregivers is not fully understood. In this study, 69 caregivers of a family member, partner, or friend with sickle cell disease in the United Kingdom or France completed an online survey to share their experiences about how caring for someone with sickle cell disease can impact a caregiver's quality of life and financial well-being. Caregiving negatively affected the quality of life of caregivers compared with people in the general population and caused a large financial and social burden. Around 70% of caregivers reported having mental health problems, 68% reported financial problems, and lost work hours and lost income were not uncommon. More research is needed to understand the specific needs of caregivers of people with sickle cell disease and how best to support them. [ABSTRACT FROM AUTHOR]

Objectives Methods Results Conclusion We investigated associations between HIV, frailty and health‐related quality of life (HRQoL).This cross‐sectional study recruited men and women aged ≥40 years in Zimbabwe. A researcher collected clinical and HRQoL data, and performed physical assessments and HIV testing. Frailty was defined using five criteria: unintentional weight loss, exhaustion, low physical activity, low gait speed, low handgrip strength. The presence of three or more criteria defined frailty, one to two pre‐frailty, and zero non‐frail. Data analysis used adjusted regression modelling.Of 1034 adults (mean ± SD, 62.0 ± 14.0 years), 21.6% (n = 223) were living with HIV: 93.3% knew their status, of whom 96.2% were on antiretroviral therapy (ART) and 89.7% of these had a viral load <50 copies/mL. Mean age at HIV diagnosis was 44.6 ± 10.4 years (only 8.1% were ≥70 years), people had been living with HIV for 9.8 ± 5.0 years and had been on ART for 9.4 ± 5.2 years. Overall, HIV was not associated with frailty: adjusted odds ratio (aOR) was 0.99 [95% confidence interval (CI): 0.42–2.33] for frailty versus non‐frailty. However, each 5 years lived with HIV was associated with twice the odds of frailty/pre‐frailty (aOR = 2.03, 95% CI: 1.03–4.13), independent of age and ART duration. Furthermore, each 5 years of ART use was associated with 60% lower odds of frailty/pre‐frailty (aOR = 0.39, 95% CI: 0.19–0.78), independent of age and years lived with HIV. Older age, minimal education and poverty were associated with frailty. Frailty was associated with lower HRQoL in people both with and without HIV.Reduced survival and good viral suppression may explain the lack of association between HIV and frailty. Early ART initiation could reduce future risk of frailty. [ABSTRACT FROM AUTHOR]

Basal cell carcinoma (BCC) is the most frequent malignant tumour worldwide and incidences are rising rapidly. BCC grow locally, but can invade surrounding tissues. Little is known concerning their impact on the health-related quality of life (HrQoL), and limited available data reports contradicting results. Measuring HrQoL in BCC patients should be done using disease-specific questionnaires such as the Basal and Squamous cell carcinoma Quality of Life (BaSQoL) questionnaire. The aim of this study was to assess the BCC-related HrQoL by examining all relevant patient, tumour and treatment characteristics to identify the main factors for the BCC-related impact. Specific attention for older BCC patients wass brought forward because of the often complex decisions in this subgroup. Patients ≥ 18 years with a history of BCC were asked to fill in the BaSQoL questionnaire, consisting of 5 subdomains. Multivariable analyses were done using a generalized additive model (GAM) because of the need for incorporation of non-linear functions. The study obtained approval of the Ethics Committee of the Ghent University Hospital (EC/2019/1352). Informed consent was obtained from all subjects. All experiments were performed in accordance with relevant guidelines and regulations. Four hundred patients with a median age of 66 were enrolled. Mean BaSQoL subscores were 0.78 (SD 0.63) for 'behaviour', 1.01 (SD 0.73) for 'diagnosis&treatment', 0.90 (SD 0.73) for 'worries', 0.40 (SD 0.63) for 'appearance' and 1.20 (SD 0.75) for 'other people', illustrating the low to moderate impact of BCC on the HrQoL. A GAM with subsequent ANOVA testing was done for all relevant variables. In 4 out of 5 BaSQoL subdomains 'age' showed a significant correlation ('behaviour' p = 0.007; 'diagnosis&treatment' p = 0.026; 'worries' p = 0.003; 'appearance' p = 0.008). Lower BaSQoL scores were seen in older patients, meaning less BCC-impact on their HrQoL. There was a clear non-linear correlation between BaSQoL scores and age, illustrating that the impact of BCC on the HrQoL shows a rapid decrease starting around the age of 70. This study is the first to illustrate the relation between the BCC-related HrQoL and the age of patients with the use of a disease-specific HrQoL instrument. We found a lower BaSQoL score in older adults, with a specific age group of interest starting around the age of 70–75. This is an argument for a potential wait-and-see strategy for BCC in these patients. [ABSTRACT FROM AUTHOR]

Purpose: A breast cancer (BC) diagnosis may negatively affect health-related quality of life (HRQoL). However, there are few comparisons of HRQoL at several time points for women with BC, and particular when subdivided into invasive and in situ tumors. The purpose of this study was to investigate various aspects of HRQoL in women recently diagnosed with invasive BC or ductal carcinoma in situ (in situ) compared to age-matched BC free controls in a population-wide sample recruited through the Cancer Registry of Norway. Methods: This cross-sectional study utilized HRQoL data collected in 2020–2022 from a digital survey including 4117 cases (3867 women with invasive BC and 430 with in situ) and 2911 controls. HRQoL was assessed ≥ 21 days after diagnosis, using EORTC QLQ-C30. This includes scores assessing global quality of life (gHRQoL) and HRQoL functions and symptoms. Multivariable regression analyses were used to compare HRQoL between cases and controls and to identify factors associated with gHRQoL and fatigue. Additionally, HRQoL 14 months after diagnosis was analyzed in 1989 of the included cases and in 1212 of the controls. Score differences of ≥ 10 points were considered clinically relevant and thus presented in the results. Results: Invasive BC cases had lower gHRQoL, role- and social functioning in addition to more fatigue than controls. In situ cases had lower role—and social functioning than controls. Invasive BC cases scored worse than in situ on all domains, but the differences were not considered clinically relevant. Physical activity was associated with better gHRQoL and less fatigue in invasive BC, in situ and controls. Both invasive BC and in situ cases improved their role- and social functioning scores from diagnosis to 14 months follow-up, however no improvement was seen for fatigue. Conclusion: Women with invasive BC and in situ reported lower role- and social functioning scores than controls right after diagnosis with improvements 14 months after diagnosis. Physical activity was associated with better gHRQoL and less fatigue and should, whenever possible, play a key role in the care for BC patients. [ABSTRACT FROM AUTHOR]

Objective Methods Results Conclusion This study aims to perform a psychometric analysis of the 36‐item short form health survey (SF‐36) in a population of pregnant women and validate an adapted version of the instrument to measure health‐related quality of life specific to pregnancy.A cross‐sectional study design was carried out with data collection between 7 and 36 weeks of gestation, with a total sample of 547 pregnant women divided into two randomized subsamples. Data were collected between September 2021 and April 2023. An exploratory factor analysis was initially performed on one subsample, followed by a confirmatory factor analysis on the other. Internal consistency was assessed using Cronbach's alpha and McDonald's omega, and correlations between factors were analyzed.Results from the exploratory factor analysis proposed a seven‐factor model explaining 56% of the variance. All proposed dimensions achieved Cronbach's alpha scores above 0.75, with a total test score of 0.92. Furthermore, all dimensions exhibited positive and statistically significant correlations. Bartlett's test of sphericity and the Kaiser–Meyer–Olkin test yielded values of 5599 (P < 0.001) and 0.871, respectively. The confirmatory factor analysis reaffirmed this model with good fit indices: χ2 792 (P < 0.001), comparative fit index (CFI) and Tucker–Lewis index (TLI) >0.90, and standardized root mean square residual (SRMR) and root mean square error of approximation (RMSEA) <0.06.This study developed and validated the “SF‐34 PREG,” an adapted version of the SF‐36, specifically designed for pregnant women. The SF‐34 PREG demonstrated high reliability and a robust factorial structure, making it a more precise and relevant tool for assessing health‐related quality of life during pregnancy. Although it does not include the social functioning dimension of the original SF‐36, the SF‐34 PREG offers improved relevance and accuracy for this specific population. Further research and clinical use of the SF‐34 PREG are recommended. [ABSTRACT FROM AUTHOR]

Background: The R-Scale-PF was proposed to evaluate the health-related quality of life (HRQoL) in patients with idiopathic pulmonary fibrosis (IPF). We generated a German version of the R-Scale-PF (GR-Scale), representing the first translation of the questionnaire into another language and assessed HRQoL longitudinally in various interstitial lung diseases (ILDs) using the R-Scale-PF scoring system at a specialized ILD centre. Methods: We have translated the questionnaire in accordance with the WHO translation guidelines and applied it to 80 ILD patients of our department, with follow-ups after 3–6 months, assessing its internal consistency, floor and ceiling effects, concurrent validity, known-groups validity, and its responsiveness to changes over time. Results: At baseline, all 80 patients completed the GR-Scale. In 70 patients (87.5%), follow-up data could be obtained after 4.43 ± 1.2 months. The GR-Scale demonstrated acceptable internal consistency (Cronbach's α 0.749) and slight floor effects. Concurrent validity analysis showed weak but significant correlations with forced vital capacity (FVC; r=-0.282 p = 0.011) and diffusion capacity for carbon monoxide (DLco; r=-0.254 p = 0.025). In the follow-up analysis, moderate correlations were found with FVC (r=-0.41 p < 0.001) and DLco (r=-0.445 p < 0.001). No significant difference in the total score was found between patients with IPF (n = 10) and with non-IPF ILDs (n = 70). The GR-Scale successfully discriminated between groups of varying disease severity based on lung function parameters and the need for long-term oxygen therapy (LTOT). Furthermore, it was able to distinguish between patients showing improvement, stability or decline of lung function parameters. Conclusion: Our prospective observational pilot study suggests that the GR-Scales is a simple and quick tool to measure HRQoL in patients with ILDs, thus providing an important additional information for the clinical assessment of ILD patients. Trial registration: Our study was retrospectively registered in the German Clinical Trial Register (DRKS) on 02.11.2022 (DRKS-ID: DRKS00030599). [ABSTRACT FROM AUTHOR]

Background: The PedsQL™ 4.0 Generic Core Scales (GSC) have been translated into over 60 languages, but use in the sub-Saharan African region is limited. This study aimed to cross-culturally adapt and validate the PedsQL™ 4.0 GCS child self-report and teen self-report versions into the Chichewa language for Malawi. Methods: The English (USA) versions were adapted (translation, back translation and cognitive interviews to evaluate conceptual equivalence) into Chichewa. We recruited 289 children (8–17 years) in Blantyre, Malawi. Classical psychometrics at the item level (missing data, endorsement frequencies, item redundancy) and scale level (internal consistency, convergent, discriminant and known groups validity) was used to evaluate the new Chichewa versions. Results: Six items were found to need cultural adaptation for Malawi. There were problems with missing data (< 5%) and adjacent endorsement frequency (< 10%) among younger children. Internal consistency reliability was acceptable (Cronbach α > 0.7). Convergent validity was generally strong (correlations > 0.4). Discriminant validity (p > 0.05) was evident with respect to gender and age, but not for school grade (p < 0.05). Effect sizes indicating known groups validity were in the expected direction but of variable magnitude. Conclusion: We have successfully adapted the PedsQL™ 4.0 GCS child self-report and teen self-report into Chichewa for use in Malawi. Many aspects of the psychometric evaluation were promising, though some elements were more mixed and we have not yet been able to evaluate test-retest reliability or responsiveness. We suggest that the PedsQL™4.0 GCS child and teen self-reports should be used with caution among children and adolescents in Malawi. [ABSTRACT FROM AUTHOR]

Background: End-stage renal disease (ESRD) poses a significant burden globally and in India. However, access to treatment remains limited due to resource and cost constraints. This study aimed to evaluate the health-related quality of life (HRQoL) and economic burden among haemodialysis patients. Methods: A descriptive cross-sectional study using European Quality of life, EQ-5D-5L, to measure health-related quality of life across 5 domains, i.e. mobility, self-care, usual activities, pain/discomfort and anxiety/depression, was administered, across three settings—government dialysis centre, private dialysis centre and charity based dialysis centre. The health utility values were also calculated. Also, the costs incurred in dialysis were done. Results: The mean (± SD) age of the participants was 55 (± 11) years, the majority of the participants were male (n = 61), 80% (n = 64) of the participants were employed before and 40% of them had lost a job, due to the morbidity of the disease. Upon analyzing the EQ-5D-5L data, it is inferred that all five domains were the same across all three setups. The direct cost incurred on the haemodialysis ranged from INR.600 to INR.3500 per month, and the indirect cost ranged fromINR.50 to INR. 3000, which is borne by the participants, in about 70% of the cases. Chief Minister Health Insurance Scheme was found to be extremely useful, wherein only 30% (n = 25) of the study participants (n=81) were insured beneficiaries. Conclusion: HRQoL was moderately impaired, and treatment posed substantial financial hardship among hemodialysis patients. Expanding access to decentralized and community-based care models could help address the challenges of regular treatment and lost productivity. [ABSTRACT FROM AUTHOR]

Purpose: Androgen deprivation therapy (ADT) is a cornerstone treatment for advanced and metastatic prostate cancer. Real-world and patient-reported insights into ADT's impact on health-related quality of life (HRQoL) and communication experiences in healthcare settings remain underexplored. This patient organisation-initiated online survey aimed to assess these aspects. Methods: Between December 2022 and August 2023, the patient organisation Think Blue Vlaanderen and the AZ Sint-Jan Hospital (Bruges, Belgium) invited ADT-treated patients to participate in a prospective, online, cross-sectional, patient-reported outcome survey. Demographic, clinical, HRQoL (FACT and EPIC-26), communication sources and information modality data were collected. Descriptive statistics and comparative analyses were applied. Results: A total of 276/312 (88.5%) participating patients were on ADT at time of survey administration and completion, with the majority receiving a 3-monthly regimen. Sexual HRQoL was low and narrowly distributed (median (IQR): 16.7 (16.7–16.7)), with 84% of patients having erectile dysfunction (ED). Patients finding their ED problematic were more likely to seek pharmaceutical treatment. Hormonal HRQoL was widely distributed (median (IQR): 65 (45–85)), which improved with prolonged ADT duration. Physically active patients reported less lack of energy, but increased hot flashes. Within consistent FACT-G summary scores (median (IQR): 64.50 (54.75–77.00)), improved emotional wellbeing with prolonged ADT was noted. Multidisciplinary communication and multimodal information provision improved patient satisfaction. Conclusion: Patient organisation-initiated surveys offer real-world and patient-reported insights. Patient-tailored HRQoL assessments and longitudinal follow-up, physical activity, and multidisciplinary and multimodal communication approaches are warranted to improve patient-centred care in patients receiving ADT. [ABSTRACT FROM AUTHOR]

To evaluate the efficacy and safety of patient-tailored 3D printed brace in the treatment of adolescent idiopathic scoliosis (AIS), and to compare the health-related quality of life (HRQoL) of patients treated with 2 different types of brace. From September 2017 to August 2020, 103 AIS patients requiring non-operative management were prospectively recruited in this study. All patients were followed up every 6 months, clinical and radiologic examination were assessed at each follow-up time. Full-length anteroposterior radiographs of the spine in the standing position were obtained. At the last follow-up, each patient completed a standardized HRQoL questionnaire. Compliance is defined as that the patient insists on wearing the brace for ≥23 hours every day (full-time wearing) and follow-up every 6 months until bone maturity. The rate of major curve Cobb progression was defined that maximum Cobb angle of major curve greater than 6° compared with that at the initial diagnosis, or aggravated to more than 45° so that orthopedic surgery was recommended during treatment, which was defined as the rate of conversion to surgery. The effects of these 2 types of braces on the rate of major curve Cobb progression and HRQoL were analyzed by independent sample t test and χ2 test. The thickness was 4 mm for thoracolumbosacral orthosis (TLSO) and 3 mm for 3D-printed brace (3DPB). In addition, compared with the material used in TLSO, the weight (600–800 g) of the 3DPB materials with the same area is reduced by about 25% to 30%. In our sample, 55 patients (49.1%) and 48 patients (33.1%) were respectively included in the 3DPB cohort and the TLSO cohort. The maximum Cobb angle of major curve in the 3DPB cohort was significantly lower than those in the TLSO cohort at 6 months, 12 months, and the last follow-up (P < 0.01). The thoracic kyphosis (TK) and lumbar lordosis (LL) of the 2 cohorts at the last follow-up were lower than those before brace treatment, in addition, there was a significant difference in TK (P = 0.001) and LL (P = 0.004) between the 2 cohorts at the follow-up. The scores of physical function, pain, self-image, mental health, and treatment satisfaction in the Chinese version of the 22-item questionnaire of the Scoliosis Research Society in the 3DPB cohort were higher than those in the TLSO cohort (P < 0.01 and P < 0.05, respectively). The scores of the 3DPB cohort were significantly higher than those of the TLSO group in the 4 dimensions (P = 0.008, 0.013, 0.015, and 0.002, respectively) of the EuroQol-5D health description system except for mobility, and the overall health status of EuroQol-5D was higher for the 3DPB cohort (P < 0.001). At the last follow-up, 1 patient in the 3DPB cohort and 10 patients in the TLSO cohort had major curve Cobb progression of greater than 6°, and the rate of major curve Cobb progression in the 3DPB cohort was significantly lower than that in the TLSO cohort (OR 14.2, 95% CI 1.7∼115.8, P < 0.01). One patient in the 3DPB and 7 patients in the TLSO cohorts received subsequent surgery or were recommended for surgery, and the rate of conversion to surgery was significantly lower than in the 3DPB cohort (OR 9.2, 95% CI 1.1∼77.9, P < 0.05). A patient-tailored 3D-printed brace is lighter, thinner, and more comfortable than conventional braces in the treatment of AIS. It can substantially improve the HRQoL of patients and can significantly reduce the progression of major curve Cobb progression and rate of conversion of surgery. [ABSTRACT FROM AUTHOR]

Purpose To assess levels and predictive factors of health-related quality of life (HRQOL) among stroke patients. Methods The study employed a cross-sectional predictive correlational design. Levels of HRQOL were assessed using the Stroke-Specific Quality of Life (SS-QOL) scale, and the Hospital Anxiety and Depression Scale was employed to assess psychological aspects among 209 Saudi stroke patients. The analysis included demographic and medical variables to comprehensively explore influencing factors. Results A two-step hierarchical multiple regression analysis was performed. The overall SS-QOL summary score (49 items) showed a mean score of 94.4 (SD  = 8.1), indicating poor functioning. Nine predictor variables were found to significantly predict HRQOL levels, including age (β = −0.212, p  ≤ .001), female (β = −5.33, p  ≤ .001), unmarried (β = 2.48, p  ≤ .001), low gross monthly income (GMI) (β = −9.02, p  ≤ .001), medium GMI (β = −8.36, p  ≤ .001), having a medical history of hypertension (β = 2.7, p  ≤ .01), time since stroke (β = 3.26 p  ≤ .001), and being a probable case of anxiety (β = −4.29, p  ≤ .001) and/or depression (β = −2.75, p  ≤ .001). These variables collectively explained ~76% of the variance in HRQOL scores (adjusted R 2 = .762, F (16,192) = 42.6, p  ≤ .001). Conclusions Stroke patients exhibited poor HRQOL levels influenced by various factors. Clinicians should consider these predictors and intervene early to enhance HRQOL among patients at risk, emphasizing the importance of optimizing patient outcomes. [ABSTRACT FROM AUTHOR]

Physical activity (PA) is an important predictor of physical and mental health preventing chronic degenerative diseases. The purpose of this study was to investigate in a group of Italian high school students whether health-related quality of life (HRQoL) and lifestyle habits (diet) are associated with the level of physical activity performed (low, moderate, high). Data were collected from 2819 adolescents (n = 951 males). HRQoL was analyzed using the Italian version of the KIDSCREEN-52. Physical activity level was analyzed using the PAQ-A, while eating habits with KIDMED. Practicing physical activity in general improves HRQoL. Specifically, adolescents practicing moderate or high PA, in single dimensions of HRQoL, showed better mood (p < 0.001), self-perception (p < 0.001), family relationships (p < 0.001), reported a higher perception of socioeconomic status (p < 0.05), relationship with peers (p < 0.001), and social acceptance (p < 0.001). High PA subjects reported increased physical (p < 0.001) and mental health (p < 0.001), increased autonomy (p < 0.001), and school learning (p < 0.001). For lifestyle habits, practicing moderate PA showed higher adherence tox the Mediterranean diet (p < 0.001). Conclusion: Our results highlighted a positive association between the frequency of PA levels, some dimensions of HRQoL, and risk behaviors. These findings demonstrated the protective role of sports not only as a preventive strategy for the onset of chronic degenerative diseases, but also as an educator of healthy lifestyle habits, thus suggesting the importance and need to implement strategies to promote sports practice. [ABSTRACT FROM AUTHOR]

• Physical activity was found to be a mediator in the relationship between pain and quality of life. • Pain was demonstrated to negatively affect quality of life. • The future of health care involves elucidating the mechanism of reduced qualify of life in older people. The objective of this analysis was to investigate the relationship between pain and quality of life and physical activity as a mediator in the relationship between pain and quality of life. This study utilised a combination of questionnaire data from 503 community-living people aged 70-years and over concerning quality of life, pain, and physical activity. Participants with higher levels of pain intensity experienced lower quality of life and engaged in lessphysical activity (P < 0.05). Physical activity was a mediator in the relationship between pain and quality of life(6.5 %). This study confirms an association between pain and quality of life and highlights physical activ-ity as an essential component of this relationship; further research is needed to understand the mechanism of this relationship. [ABSTRACT FROM AUTHOR]

• Quality of life of mild premature infants at 4 years may be similar to full-term. • Premature infants showed a high quality of life related to sleep and behavior. • Full-term infants presented better quality of life related to communication skills This hospital-based retrospective matched cohort study explored the association between preterm birth (PB) and health-related quality of life (HRQoL) in preschool children. PB children were matched by sex and day of birth (1:2) with full-term birth (FTB) children (PB = 89, FTP = 178). The children's parent-reported HRQoL was assessed using the TNO-AZL Preschool Children Quality of Life Questionnaire. The association between PB and HRQoL was examined using conditional logistic regressions. PB children were mostly moderate-to-mild preterm (64%) and exhibited a lower probability of presenting an HRQoL below the median in the sleeping (OR = 0.46; 95% CI = 0.23–0.91) and behavior (OR = 0.46; 95% CI = 0.23–0.85) subscales. Conversely, this probability in communication HRQoL was higher in the PB group (OR = 1.91; 95% CI = 1.01–3.64). PB was associated to better sleeping and behavior HRQoL, but poorer communication HRQoL. These findings could imply a potential normalization of developmental outcomes in moderate-to-mild PB. [ABSTRACT FROM AUTHOR]

Informal caregivers of older people face demanding responsibilities that can negatively affect their wellbeing, highlighting the relevance of interventions that address their specific needs. This study aimed to assess the effects of a group music therapy program based on different songwriting approaches applied to informal caregivers of older adults with dependency. A sample of 113 caregivers participated, being assigned either to the intervention (n = 60) or the control group (n = 53). The intervention group caregivers received 10 weekly sessions of the songwriting program, while the control group continued with their usual care service. Psychological symptoms and health-related quality of life (HRQoL) were assessed at baseline and follow-up using the State-Trait Anxiety Inventory, Beck Depression Inventory-II, Zarit Burden Interview, and SF-36. Group × Time interactions revealed significant improvements in the intervention group compared to the control one in trait anxiety (p = 0.022), social functioning (p = 0.013), role limitations due to physical problems (p = 0.020), and physical component summary (p = 0.022). These findings provided valuable evidence on this novel intervention, showing positive effects for caregivers' wellbeing. The current research emphasizes the importance of considering music therapy as a potential intervention among caregiver support programs. [ABSTRACT FROM AUTHOR]

Abstract Background Despite being a widely used generic measure of health-related quality of life worldwide, there is limited evidence on the psychometric properties of the EuroQoL Five-dimensions five level (EQ-5D) among cervical cancer patients in Ethiopia. Objective To evaluate psychometric properties of the Amharic version of EQ-5D among Ethiopian cervical cancer patients. Methods A longitudinal survey of cervical cancer patients receiving treatment at two Ethiopian tertiary care facilities was conducted from March 2022 to July 2023. Participants completed the EQ-5D and the European Organization for Research and Therapy of Cancer (EORTC QLQ-C30) at baseline and after three months on treatment. Effect size and standardized response mean were used to assess responsiveness. Anchor-based and distribution-based methods were used to calculate the minimal clinically important difference (MCID). Minimal detectable change (MDC) ratios were computed at the individual and group levels. Statistical significance was determined at p 0.6) and the instrument showed good discriminate validity between patients with different health states. The effect size ranged between − 0.12 and 0.60 for the EQ-5D index value and − 0.12 to 1.16 for the EQ VAS, indicating small to large responsiveness. The average (range) MCID value of the EQ-5D index was 0.10–0.15. The findings showed that MCID to MDC ratios at the group level were more clinically meaningful than the individual level. Conclusion The EQ-5D effectively detected changes and discriminate patients with different levels of health. While group-level MCIDs were established in this study, further studies are recommended to prove its usefulness at the individual-level.

Abstract Background Myositis is a rare disease associated with impaired health-related quality of life. A study evaluating the effectiveness of an intervention to improve the quality of life and well-being of myositis patients is presented. Methods All myositis patients in a health district were contacted. Thirty-four eligible patients were randomly assigned to the experimental (n = 17) or control (n = 17) group. A psychoeducational intervention of 5 100-min sessions focusing on the disease as related to daily life was conducted only in experimental patients. Several reliable tools to measure quality of life and well-being were administered twice, before and after the intervention, to both groups. Results In the experimental group, post-test scores were higher than pre-test in quality of life, well-being, and self-efficacy to manage the disease. Improvements were more evident in the experimental group than controls in 70% of the variables studied. Specifically, sedentariness decreased and satisfaction with social relationships increased in the post-test evaluation to a greater degree in the experimental group than in controls. Conclusions This randomized controlled trial on a representative sample of myositis patients in an extensive population provides evidence indicating the effectiveness of a psychoeducational intervention for improving HRQoL, well-being, and self-efficacy to manage the disease. Trial registration: NCT06300983.

Abstract Introduction Invasive meningococcal disease (IMD) has a low incidence but is a life-threatening illness that is preventable via vaccination. Even with treatment, up to 10–15% of cases are fatal, and many survivors may experience severe long-term sequelae. Building upon the acute-phase findings presented in the Part 1 manuscript for this study, we describe the long-term physical, social, psychological, and economic burden of IMD on US survivors and their caregivers in this Part 2 manuscript. Methods This was a novel, non-interventional, mixed-methods study among US survivors and their caregivers using a bespoke survey and qualitative interviews. Results Ten adult survivors, one adolescent survivor, and three caregivers participated in this study. Survivors described extensive physical, neurological, and systemic sequelae, including difficulty walking (11/11), repeat secondary infections (9/11), and numbness (6/11), among others, which were echoed by caregivers. Survivors shared that IMD had negatively impacted their long-term quality of life, citing long-term impacts including emotional impacts (11/11), social impacts (10/11), memory (7/11) and attention (5/11) problems, and difficulty with functional (10/11), self-care (7/11), and physical (6/11) activities. Caregivers were also impacted, describing emotional trauma (3/3), sleep problems (2/3), and day-to-day challenges (2/3). Long-term financial challenges related to healthcare resource utilization were substantial, with specialized care and rehabilitation therapy expenses (11/11), insurance challenges (8/11), and high out-of-pocket costs (6/11) for survivors. Productivity losses were also commonly described by survivors (9/11); sequelae hindered ability to attend school (9/11) or work full time (8/11). Caregivers (2/3) described taking leave from their employment, affecting family income. Conclusions The humanistic burden of IMD on survivors and their caregivers is substantial and persistent. A comprehensive approach, including preventative measures (e.g., vaccination) and long-term medical, psychological, and financial support for those affected, is needed to mitigate the burden of IMD. A video abstract is available with this article. Video abstract (MP4 1,17,430 kb)

Abstract Background Evidence on long COVID symptom clustering patterns among patients with COVID-19 is limited. We summarized long COVID symptoms in clusters defined by number of symptoms co-occurring together, and we assessed Health-Related Quality of Life (HQRoL), Work Productivity and Activity Impairment (WPAI) outcomes across these clusters over time. We assessed associations between the clusters and BNT162b2 vaccination status. Methods A prospective longitudinal patient-reported outcomes (PRO) study recruited laboratory-confirmed symptomatic COVID-19 patients seeking testing from a national retail pharmacy. Long COVID-19 symptoms were self-reported by participants at 4-week, 3-month and 6-month surveys. Patient classes identified via latent class analysis (LCA) with long COVID-19 symptoms were simplified into clusters based on number of symptoms. HRQoL and WPAI outcomes were collected using EQ-ED-5L and WPAI: GH questionnaires. Mixed models for repeated measures analyses were conducted to examine associations between exposure groups and outcomes. Results The study included 328 participants that were segmented into three groups of long COVID-19 symptoms based on LCA and then simplified by the number of symptoms (Cluster 1 low, 6 symptoms). The number of long COVID-19 symptoms was negatively associated with HRQoL and WPAI, whereby participants with high symptom burden (>6 symptoms) had the lowest HRQoL and WPAI scores assessed by absenteeism, presenteeism, work productivity loss, activity impairment, and hours worked metrics. Compared with those unvaccinated and not up-to-date with COVID-19 vaccination, subjects boosted with BNT162b2 consistently reported less symptom burden during the follow-up, regardless of their symptom-based cluster. Conclusion Three distinct patient clusters based on frequency of long COVID symptoms experienced different HRQoL and WPAI outcomes over 6 months. The cluster with more concomitant symptoms experienced greater burden than the others. Participants up-to-date with BNT162b2 reported lower symptom burden across all clusters and timeframes. Clinical trial registration Clinicaltrials.gov NCT05160636.

Abstract Objective As the ageing process in China further accelerates and the average life expectancy increases, chronic disease prevalence and multimorbidity rates are constantly rising, especially among elderly individuals. However, few previous studies have explored the impacts of chronic diseases and multimorbidity on health-related quality of life (HRQoL). This study aimed to investigate this association among community-dwelling elderly individuals in China. Methods A cross-sectional study was conducted in communities in three cities (Suzhou, Qingdao, and Guangzhou). The basic characteristics, chronic diseases and HRQoL of participants were collected, and HRQoL was measured by the EuroQol 5-Dimensions 3-Level version (EQ-5D-3L). Logistic regression, Tobit regression and generalized linear models were used to assess the impacts of chronic diseases and multimorbidity on HRQoL. Results Approximately 83.2 percent of the 1,218 respondents had chronic conditions, with 30 percent having multimorbidity. After controlling for sociodemographic and health behaviour factors, patients with stroke were more likely to report problems in all five dimensions of the EQ-5D and had a lower EQ-5D utility index (UI) (b = -0.342) than patients with other chronic conditions. Patients with chronic pulmonary obstruction had a lower EuroQol Visual Analog Scale (EQ-VAS) (b = -11.169) than patients with other chronic conditions. Furthermore, patients with multimorbidity had worse HRQoL (P

Abstract Basal cell carcinoma (BCC) is the most frequent malignant tumour worldwide and incidences are rising rapidly. BCC grow locally, but can invade surrounding tissues. Little is known concerning their impact on the health-related quality of life (HrQoL), and limited available data reports contradicting results. Measuring HrQoL in BCC patients should be done using disease-specific questionnaires such as the Basal and Squamous cell carcinoma Quality of Life (BaSQoL) questionnaire. The aim of this study was to assess the BCC-related HrQoL by examining all relevant patient, tumour and treatment characteristics to identify the main factors for the BCC-related impact. Specific attention for older BCC patients wass brought forward because of the often complex decisions in this subgroup. Patients ≥ 18 years with a history of BCC were asked to fill in the BaSQoL questionnaire, consisting of 5 subdomains. Multivariable analyses were done using a generalized additive model (GAM) because of the need for incorporation of non-linear functions. The study obtained approval of the Ethics Committee of the Ghent University Hospital (EC/2019/1352). Informed consent was obtained from all subjects. All experiments were performed in accordance with relevant guidelines and regulations. Four hundred patients with a median age of 66 were enrolled. Mean BaSQoL subscores were 0.78 (SD 0.63) for ‘behaviour’, 1.01 (SD 0.73) for ‘diagnosis&treatment’, 0.90 (SD 0.73) for ‘worries’, 0.40 (SD 0.63) for ‘appearance’ and 1.20 (SD 0.75) for ‘other people’, illustrating the low to moderate impact of BCC on the HrQoL. A GAM with subsequent ANOVA testing was done for all relevant variables. In 4 out of 5 BaSQoL subdomains ‘age’ showed a significant correlation (‘behaviour’ p = 0.007; ‘diagnosis&treatment’ p = 0.026; ‘worries’ p = 0.003; ‘appearance’ p = 0.008). Lower BaSQoL scores were seen in older patients, meaning less BCC-impact on their HrQoL. There was a clear non-linear correlation between BaSQoL scores and age, illustrating that the impact of BCC on the HrQoL shows a rapid decrease starting around the age of 70. This study is the first to illustrate the relation between the BCC-related HrQoL and the age of patients with the use of a disease-specific HrQoL instrument. We found a lower BaSQoL score in older adults, with a specific age group of interest starting around the age of 70–75. This is an argument for a potential wait-and-see strategy for BCC in these patients.

Abstract Purpose A breast cancer (BC) diagnosis may negatively affect health-related quality of life (HRQoL). However, there are few comparisons of HRQoL at several time points for women with BC, and particular when subdivided into invasive and in situ tumors. The purpose of this study was to investigate various aspects of HRQoL in women recently diagnosed with invasive BC or ductal carcinoma in situ (in situ) compared to age-matched BC free controls in a population-wide sample recruited through the Cancer Registry of Norway. Methods This cross-sectional study utilized HRQoL data collected in 2020–2022 from a digital survey including 4117 cases (3867 women with invasive BC and 430 with in situ) and 2911 controls. HRQoL was assessed ≥ 21 days after diagnosis, using EORTC QLQ-C30. This includes scores assessing global quality of life (gHRQoL) and HRQoL functions and symptoms. Multivariable regression analyses were used to compare HRQoL between cases and controls and to identify factors associated with gHRQoL and fatigue. Additionally, HRQoL 14 months after diagnosis was analyzed in 1989 of the included cases and in 1212 of the controls. Score differences of ≥ 10 points were considered clinically relevant and thus presented in the results. Results Invasive BC cases had lower gHRQoL, role- and social functioning in addition to more fatigue than controls. In situ cases had lower role—and social functioning than controls. Invasive BC cases scored worse than in situ on all domains, but the differences were not considered clinically relevant. Physical activity was associated with better gHRQoL and less fatigue in invasive BC, in situ and controls. Both invasive BC and in situ cases improved their role- and social functioning scores from diagnosis to 14 months follow-up, however no improvement was seen for fatigue. Conclusion Women with invasive BC and in situ reported lower role- and social functioning scores than controls right after diagnosis with improvements 14 months after diagnosis. Physical activity was associated with better gHRQoL and less fatigue and should, whenever possible, play a key role in the care for BC patients.

Abstract Background This study aimed to assess the factors influencing health-related quality of life (HRQoL) in patients experiencing adverse drug reactions (ADRs) at a tertiary care public sector hospital. A cross-sectional study was conducted over a period of 18 months, and included both male and female patients aged 18 years and above. Patients who visited the outpatient and inpatient departments with complaints associated with ADRs were included in this study. HRQoL data were collected using the EuroQol—5 Dimension—5 Level (EQ-5D-5L) questionnaire to assess five dimensions of health on a five-level scale. Descriptive statistics, t-tests, and analysis of variance were used to analyze the data. Multivariate regression analysis was performed to identify the potential determinants of HRQoL. Results A total of 316 patients were included in the study among these participants, of which 54% were female, and 65% were from rural areas. The majority (68%) of the patients had moderately severe ADRs, and 63% of the participants had an income

Abstract Background Sickle cell disease (SCD), a genetic blood disorder that affects red blood cells and oxygen delivery to body tissues, is characterized by haemolytic anaemia, pain episodes, fatigue, and end-organ damage with acute and chronic dimensions. Caring for patients with SCD imposes a high burden on informal caregivers. This study aims to capture the impact on health-related quality of life (HRQoL) and economic burden of caregiving for patients with SCD. Methods Validated instruments of HRQoL (EQ-5D-5L, Carer Quality of Life-7 dimensions [CarerQol-7D]) and productivity (Work Productivity and Activity Impairment Questionnaire: Specific Health Problem [WPAI: SHP]) were administered via a cross-sectional online survey to caregivers in the United Kingdom (UK) and France. Demographics, HRQoL, and economic burden data were analyzed using descriptive statistics. Economic burden was determined using country-specific minimum and average wage values. Subgroup analysis examined caregivers with and without SCD. Results Sixty-nine caregivers were recruited (UK, 43; France, 26), 83% were female, and 22% had SCD themselves. The mean (SD) caregiver EQ-5D-5L score was 0.66 (0.28) (UK, 0.62; France, 0.73), and the mean CarerQol-7D score was 80.69 (24.40) (UK, 78.72 [25.79]; France, 83.97 [22.01]). Mental health problems were reported in 72% and 70% of caregivers measured using the EQ-5D-5L and CarerQol-7D, respectively. Financial problems were reported by 68% of caregivers, with mean annual minimum wage productivity losses of £4209 and €3485, increasing to £5391 and €9319 for average wages. Sensitivity analysis determined additional HRQoL decrements for caregivers with and without, SCD. Conclusion Caring for patients with SCD impacts the HRQoL and economic burden of caregivers. Further research to support the complex needs of SCD caregivers is required.

The purpose of this study was to determine hypertension correlates among the patients' survey characteristics after splitting the sample into two groups based on their age and perform this assessment separately for each of the groups. Materials and methods. A cross-sectional retrospective study among 647 patients was conducted using self-administered EQ-5D 3L, as well as demographic, economic and health questions. Results. The overall self-reported arterial hypertension (AH) prevalence was 36.9%. The sample was split into two groups: 18-54 and 55+ years, with AH prevalence of 23.5% and 51%, respectively. The differences between AH and non-AH patients in each age group were explored. Younger AH patients significantly more often reported fatigue, headache, chest pain and having at least 1 acute condition for the last year than non-hypertensive ones at the same age. Diabetes, asthma/chronic bronchitis and joint pain/arthritis were also more common among younger AH patients. The overall HRQol and self-perceived health were significantly lower among young hypertensive patients, and their median severity index was higher compared to non-hypertensive adults of the same age. They more often experienced moderate pain/discomfort and moderate anxiety/depression. Despite of this, older AH patients reported similar HRQoL compared to non-AH patients. Conclusions. Different comorbidities were found amongst younger and older hypertensive patients. Most of the already known AH correlates were confirmed only among younger adults (18-54 years old). Arterial hypertension leads to significantly lower health-related quality of life, self-perceived health and higher severity index only among the younger group, mainly due to the depression and pain they experience.

Abstract Background The R-Scale-PF was proposed to evaluate the health-related quality of life (HRQoL) in patients with idiopathic pulmonary fibrosis (IPF). We generated a German version of the R-Scale-PF (GR-Scale), representing the first translation of the questionnaire into another language and assessed HRQoL longitudinally in various interstitial lung diseases (ILDs) using the R-Scale-PF scoring system at a specialized ILD centre. Methods We have translated the questionnaire in accordance with the WHO translation guidelines and applied it to 80 ILD patients of our department, with follow-ups after 3–6 months, assessing its internal consistency, floor and ceiling effects, concurrent validity, known-groups validity, and its responsiveness to changes over time. Results At baseline, all 80 patients completed the GR-Scale. In 70 patients (87.5%), follow-up data could be obtained after 4.43 ± 1.2 months. The GR-Scale demonstrated acceptable internal consistency (Cronbach’s α 0.749) and slight floor effects. Concurrent validity analysis showed weak but significant correlations with forced vital capacity (FVC; r=-0.282 p = 0.011) and diffusion capacity for carbon monoxide (DLco; r=-0.254 p = 0.025). In the follow-up analysis, moderate correlations were found with FVC (r=-0.41 p

Abstract Background The PedsQL™ 4.0 Generic Core Scales (GSC) have been translated into over 60 languages, but use in the sub-Saharan African region is limited. This study aimed to cross-culturally adapt and validate the PedsQL™ 4.0 GCS child self-report and teen self-report versions into the Chichewa language for Malawi. Methods The English (USA) versions were adapted (translation, back translation and cognitive interviews to evaluate conceptual equivalence) into Chichewa. We recruited 289 children (8–17 years) in Blantyre, Malawi. Classical psychometrics at the item level (missing data, endorsement frequencies, item redundancy) and scale level (internal consistency, convergent, discriminant and known groups validity) was used to evaluate the new Chichewa versions. Results Six items were found to need cultural adaptation for Malawi. There were problems with missing data ( 0.7). Convergent validity was generally strong (correlations > 0.4). Discriminant validity (p > 0.05) was evident with respect to gender and age, but not for school grade (p

Abstract Background End-stage renal disease (ESRD) poses a significant burden globally and in India. However, access to treatment remains limited due to resource and cost constraints. This study aimed to evaluate the health-related quality of life (HRQoL) and economic burden among haemodialysis patients. Methods A descriptive cross-sectional study using European Quality of life, EQ-5D-5L, to measure health-related quality of life across 5 domains, i.e. mobility, self-care, usual activities, pain/discomfort and anxiety/depression, was administered, across three settings—government dialysis centre, private dialysis centre and charity based dialysis centre. The health utility values were also calculated. Also, the costs incurred in dialysis were done. Results The mean (± SD) age of the participants was 55 (± 11) years, the majority of the participants were male (n = 61), 80% (n = 64) of the participants were employed before and 40% of them had lost a job, due to the morbidity of the disease. Upon analyzing the EQ-5D-5L data, it is inferred that all five domains were the same across all three setups. The direct cost incurred on the haemodialysis ranged from INR.600 to INR.3500 per month, and the indirect cost ranged fromINR.50 to INR. 3000, which is borne by the participants, in about 70% of the cases. Chief Minister Health Insurance Scheme was found to be extremely useful, wherein only 30% (n = 25) of the study participants (n=81) were insured beneficiaries. Conclusion HRQoL was moderately impaired, and treatment posed substantial financial hardship among hemodialysis patients. Expanding access to decentralized and community-based care models could help address the challenges of regular treatment and lost productivity.

Background: Lipoedema is a painful adipose tissue disorder, affecting the limbs of women, that is resistant to diet and exercise. The purpose of the study was to evaluate the retrospective health-related quality-of-life (HRQoL) outcomes for patients with lower limb lipoedema (LLL) following tumescent liposuction (TL). Methods: Forty-seven patients received TL over 5 years from 2015-2020 for LLL. As part of their routine treatment evaluation, each patient completed 4 validated HRQoL questionnaires at initial assessment. The questionnaires examined the patients’ experiences relating to anxiety and depression, lower extremity function, appearance, and symptoms. The same questionnaires were posted to the patients after an average of 12 months post-procedure/s to establish the outcomes of the intervention. Results: The study demonstrated that patients’ HRQoL improved at 12 months (average) following TL. The results of all the questionnaires were statistically significant, and patients with stage 3 LLL showed the most improvement in outcomes. Conclusion: The findings demonstrated that TL achieves positive HRQoL outcomes in patients with LLL; however, long-term follow-up is needed to determine if the benefits sustain. Additionally, larger prospective controlled studies are required to provide robust evidence for this procedure.

Introduction: Invasive meningococcal disease (IMD) has a low incidence but is a life-threatening illness that is preventable via vaccination. Even with treatment, up to 10–15% of cases are fatal, and many survivors may experience severe long-term sequelae. Building upon the acute-phase findings presented in the Part 1 manuscript for this study, we describe the long-term physical, social, psychological, and economic burden of IMD on US survivors and their caregivers in this Part 2 manuscript. Methods: This was a novel, non-interventional, mixed-methods study among US survivors and their caregivers using a bespoke survey and qualitative interviews. Results: Ten adult survivors, one adolescent survivor, and three caregivers participated in this study. Survivors described extensive physical, neurological, and systemic sequelae, including difficulty walking (11/11), repeat secondary infections (9/11), and numbness (6/11), among others, which were echoed by caregivers. Survivors shared that IMD had negatively impacted their long-term quality of life, citing long-term impacts including emotional impacts (11/11), social impacts (10/11), memory (7/11) and attention (5/11) problems, and difficulty with functional (10/11), self-care (7/11), and physical (6/11) activities. Caregivers were also impacted, describing emotional trauma (3/3), sleep problems (2/3), and day-to-day challenges (2/3). Long-term financial challenges related to healthcare resource utilization were substantial, with specialized care and rehabilitation therapy expenses (11/11), insurance challenges (8/11), and high out-of-pocket costs (6/11) for survivors. Productivity losses were also commonly described by survivors (9/11); sequelae hindered ability to attend school (9/11) or work full time (8/11). Caregivers (2/3) described taking leave from their employment, affecting family income. Conclusions: The humanistic burden of IMD on survivors and their caregivers is substantial and persistent. A comprehensive approach, including preventative measures (e.g., vaccination) and long-term medical, psychological, and financial support for those affected, is needed to mitigate the burden of IMD. A video abstract is available with this article. -99uXpJYNLEniKmRRZ2d4e Video abstract (MP4 1,17,430 kb) Plain Language Summary: Invasive meningococcal disease (IMD) is an uncommon but life-threatening disease that can lead to serious long-term health problems and impacts on quality of life. We conducted this study to understand the experiences of survivors of IMD and their caregivers in the USA. In a previous paper, we described the experiences of 11 survivors and 3 caregivers during the time of IMD infection and initial recovery (the "short-term") [1]. Here, we continue to follow the journeys of those survivors and caregivers, and explore the health complications and impacts of IMD that persist long after initial recovery. Survivors experienced long-term physical, neurological, and systemic health problems due to IMD, such as difficulty walking, repeat infections, and numbness. Many shared that their quality of life had been negatively affected by IMD, describing memory and attention problems, social challenges, emotional trauma, and difficulty with daily activities. Caregivers were also impacted, experiencing sleep problems, distress, and day-to-day challenges. Even with insurance, specialized medical care and therapies were expensive and led to long-term financial challenges. Many survivors also found it difficult to attend school or work full-time because of their health limitations. Caregivers' ability to work was also limited because of caregiving needs, affecting ability to earn income. IMD places a heavy, long-term burden on survivors and their caregivers, and understanding the lived experiences of those affected is crucial. In addition to prevention (such as through vaccination), comprehensive, long-term medical, psychological, and financial support is needed to reduce the burden of this disease. [ABSTRACT FROM AUTHOR]

Background and Purpose: Data on health‐related quality of life (HRQoL) and mood in cerebral amyloid angiopathy (CAA), a disease characterized by stroke and cognitive decline, are limited. We aimed to investigate the impacted domains of life, value‐based HRQoL and the prevalence of depression and anxiety in patients with CAA. Methods: We conducted a cross‐sectional study of patients with sporadic (s)CAA, lobar dominant mixed CAA and hypertensive arteriopathy (mixed CAA‐HTA), or Dutch‐type hereditary (D‐)CAA, from prospective outpatient clinic cohorts. Participants completed four questionnaires: the EuroQoL 5 dimensions 5‐level questionnaire (EQ‐5D‐5L; EQ‐VAS for visual analogue scale; EQ‐Index for index rating), the Short‐Form 36 questionnaire (SF‐36), the Center for Epidemiologic Studies—Depression scale (CES‐D), and the Hospital Anxiety and Depression Scale (HADS; ‐D for depression and ‐A for anxiety subscales). The EQ‐5D‐5L assesses the domains mobility, self‐care, usual activities, pain/discomfort and anxiety/depression. The SF‐36 domains are physical functioning, social functioning, physical role limitations, emotional role limitations, mental health, vitality, bodily pain, and general health perceptions. We compared age‐ and sex‐ adjusted HRQoL (SF‐36 domain scores; EQ‐VAS; EQ‐Index) to the Dutch normative population, and estimated the prevalences of current depression (either: history of depression or current use of antidepressants, with high score on CES‐D [≥16] and/or HADS‐D [≥8]; or high score on both depression questionnaires) and anxiety (HADS‐A ≥ 8). Results: We included 179 patients: 77 with sCAA (mean age: 72 years, women: 36%), 31 with mixed CAA‐HTA (68 years, women: 29%), and 71 with D‐CAA (56 years, women: 52%, symptomatic: 35 [49%]). The SF‐36 profiles of all patient groups were similar, negatively differing from the norm in emotional role functioning, social functioning and vitality. The EQ‐VAS score of patients (mean [SD] sCAA: 76 [16], D‐CAA: 77 [15]) was similar to the norm, as was the EQ‐Index score. Fifteen patients with sCAA (23%; 95% confidence interval [CI] 13%–33%), seven with mixed CAA‐HTA (27%; 95% CI 10%–44%) and eight with D‐CAA (14%; 95% CI 5%–22%) were noted as having depression. The prevalences of anxiety and depression were equivalent. Conclusions: We found that CAA influenced emotional role functioning and aspects linked to social engagement consistently across its subtypes. One quarter of patients exhibited depressive or anxiety symptoms. Recognizing these impacted domains could enhance overall well‐being. [ABSTRACT FROM AUTHOR]

Purpose: The effect of cancellation and postponement of primary total hip arthroplasty (THA) or knee arthroplasty (TKA) on patient outcomes is unclear. The aim was to assess whether cancellation and delay to arthroplasty was associated with worse joint specific function and quality of life (QoL) 1-year postoperatively. Methods: A single centre retrospective case–control study was performed for all patients planned to undergo THA or TKA in 2019. A total of 3133 arthroplasties were scheduled for 2019 (1484 THA, 1649 TKA), of which 344 (11.0%) were cancelled (136 THA [9.2%], 208 TKA [12.6%]). Pre-operative and one-year post-operative EuroQol (EQ-5D) and Oxford hip (OHS) or knee (OKS) scores were collected. Results: The median time between the date of cancellation and the subsequent operation was 46.0 days for TKA and 45.5 days for THA. The cancelled group were more likely to be male (odds ratio [OR] 1.23, p = 0.03), older (mean difference [MD] 1.19, p = 0.03), with a higher ASA grade (OR 1.88 [ASA 3], OR 5.3 [ASA 4], p = 0.001) or planned for a TKA (OR 1.41, p = 0.003). There were no differences in pre-operative OKS (mean difference [MD] 0.19, p = 0.828) or EQ-5D (MD 0.028, p = 0.394) or in the one-year postoperative OKS (MD 1.51, p = 0.064) or EQ-5D (MD 0.041, p = 0.067) between groups undergoing TKA. However, cancelled THA patients had lower pre-operative OHS (MD 2.73, p = 0.018) and EQ-5D (MD 0.134, p = 0.0017) but at one-year postoperatively there was no difference in the absolute OHS (MD 2.07, p = 0.052) or EQ5D (MD 0.04, p = 0.142). The improvement in hip EQ-5D was greater (MD 0.096, p = 0.016) in the cancelled group. Conclusion: Cancellation and short delay did not influence joint specific outcome or QoL following THA or TKA at one-year. Preoperative hip specific pain, function and QoL were worse in cancelled THA patients, suggesting deterioration while waiting for their surgery, but this did not affect their postoperative outcome. [ABSTRACT FROM AUTHOR]

Abstract The evidence clearly shows that education greatly impacts people’s well-being. Bangladesh has two main education systems—general and traditional religious schooling. The current study aimed to measure the quality of life of madrasa students and find out the factors influencing it. This was a cross-sectional study on a group of madrasa students in the Mirpur area of Dhaka, Bangladesh. Data were collected using two-stage stratified random sampling between April and May 2022. The final sample size was 373. The health-related quality of life (HRQoL) was calculated using the KIDSCREEN-10 index, and the median split was used to categorize the score into ‘good’ and ‘poor’ categories. A p