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INTRODUCTION: Duchenne muscular dystrophy (DMD) is characterized by rapid functional decline. Current available treatment options aim to delay disease progression or stabilize physical function. To aid in healthcare providers understanding of the symptoms of disease that impact patients experience, this study explored childrens physical functioning, activities of daily living (ADLs), and health-related quality of life (HRQoL) after receiving eteplirsen, a weekly infusion indicated for individuals with DMD with exon 51 skip-amenable mutations. METHODS: Fifteen caregivers of male individuals with DMD participated in a 60-min, semi-structured interview. Open-ended questioning explored changes in the childrens condition or maintenance in abilities since eteplirsen initiation. RESULTS: Children with DMD (age 7-15 years [mean 10.9]; steroid treatment at interview, n = 8; time since eteplirsen initiation 3-24 months [mean 14.9]) were described by caregivers as ambulatory (n = 9) and non-ambulatory (n = 6). Caregivers of ambulatory children reported improvements or maintenance of walking ability (n = 7/9), running (n = 6/9), and using stairs (n = 4/9). Continued decline in using stairs was reported by two caregivers. In upper-limb functioning, improvements or maintenances in fine-motor movements were reported by nearly half of all caregivers (n = 7/15), with one caregiver noting a continued decline. Subsequent improvements or maintenances in ADLs were described. Improvements or maintenances in fatigue (n = 9/15), muscle weakness (n = 7/15), and pain (n = 6/15) were reported, although some caregivers described a continued decline (n = 3/15 fatigue, n = 1/15 muscle weakness, n = 2/15 pain). Importantly, most caregivers who reported maintenances in ability perceived this as a positive outcome (n = 6/9). CONCLUSION: This exploratory study indicated that most caregivers perceived improvements or maintenances in aspects of their childs physical functioning, ADLs, and HRQoL since eteplirsen initiation, which they perceived to be a positive outcome.

Introduction: Financial toxicity has negative implications for patient well-being and health outcomes. There is a gap in understanding financial toxicity for patients undergoing palliative radiotherapy (RT). Methods: A review of patients treated with palliative RT was conducted from January 2021 to December 2022. The FACIT-COST (COST) was measured (higher scores implying better financial well-being). Financial toxicity was graded according to previously suggested cutoffs: Grade 0 (score ≥26), Grade 1 (14-25), Grade 2 (1-13), and Grade 3 (0). FACIT-TS-G was used for treatment satisfaction, and EORTC QLQ-C30 was assessed for global health status and functional scales. Results: 53 patients were identified. Median COST was 25 (range 0-44), 49% had Grade 0 financial toxicity, 32% Grade 1, 15% Grade 2, and 4% Grade 3. Overall, cancer caused financial hardship among 45%. Higher COST was weakly associated with higher global health status/Quality of Life (QoL), physical functioning, role functioning, and cognitive functioning; moderately associated with higher social functioning; and strongly associated with improved emotional functioning. Higher income or Medicare or private coverage (rather than Medicaid) was associated with less financial toxicity, whereas an underrepresented minority background or a non-English language preference was associated with greater financial toxicity. A multivariate model found that higher area income (HR .80, P = .007) and higher cognitive functioning (HR .96, P = .01) were significantly associated with financial toxicity. Conclusions: Financial toxicity was seen in approximately half of patients receiving palliative RT. The highest risk groups were those with lower income and lower cognitive functioning. This study supports the measurement of financial toxicity by clinicians.

Researchers have established factors that impair (e.g., stress) or facilitate (e.g., occupational recovery) health among professionals operating in sport and performance (e.g., coaches). However, there is a paucity of research examining factors that impair or facilitate the health of sport psychology professionals. Given that sport psychology professionals have an obligation to manage their health to maintain effective service provision, research is needed to fill this gap. The purpose of this study was to identify predictors of burnout and health among certified mental performance consultants. Participants completed measures of perceived stress, burnout, occupational recovery, and health-related quality of life. Regression results, including a moderator analysis, indicated that perceived stress and occupational recovery predicted burnout, while occupational recovery moderated the relationship between perceived stress and burnout. Perceived stress and burnout further predicted health-related quality of life. Recommendations include certified mental performance consultants spending nonwork time in low-effort and/or physical activities, as well as exerting autonomy over nonwork time. [ABSTRACT FROM AUTHOR]

The COVID-19 pandemic has resulted in lasting effects on children, necessitating a thorough understanding of its impact for effective recovery planning. This study investigated the associations among COVID-19 family stress, family functioning, childrens lifestyle behaviors (i.e., healthy food intake, unhealthy food intake, physical activity, and screen time), and their health-related quality of life (HRQOL). Data from a 2022 survey of parents with children aged 5 to 12 (mean age of boys: 8.36, mean age of girls: 7.76) in the United States through the online Prolific platform were analyzed using path analysis and gender-based multi-group analysis. The results showed an inverse relationship between family stressors and functioning (β = -0.39, p < 0.05). COVID-19 family stress was negatively related to child physical HRQOL (β = -0.20, p < 0.05) but not psychosocial HRQOL. Family functioning showed a positive relation with child healthy food intake (β = 0.26, p < 0.05) and a negative relation with unhealthy diet consumption (β = -0.27, p < 0.05), while no significant associations were found with child physical activity and screen time. Family functioning was indirectly associated with both types of HRQOL through the childs eating patterns. These relationships were more pronounced for girls. The findings point to a complex interplay between family stress and functioning, dietary habits, and the HRQOL of children during the COVID-19 pandemic, particularly concerning girls food intake and well-being.

We examine whether the COVID-19 pandemic was associated with changes to daily activity limitations due to poor physical or mental health and whether those changes were different within and between gendered and racialized groups. We analyze 497,302 observations across the 2019 and 2020 waves of the Centers for Disease Control and Prevention Behavioral Risk Factor Surveillance System survey. Among White men and women, the COVID-19 pandemic was associated with fewer days of health-related activity limitations and decreased frequent activity limitation (≥14 days in the past month) compared to the prepandemic period. By contrast, Latina and Black women experienced increased days of activity limitation and greater likelihood of frequent activity limitation, and these changes were significantly different than for White women. These findings are robust to the inclusion of structural inequality measures and demonstrate how systemic racism and sexism likely exacerbate a myriad of pandemic-related health problems.

Heart failure (HF) is characterized by a progressive clinical course marked by frequent exacerbations and repeated hospitalizations, leading to considerably high morbidity and mortality rates. Patients with HF present with a constellation of bothersome symptoms, which range from physical to psychological and mental manifestations. With the transition to more advanced HF stages, symptoms become increasingly more debilitating, interfere with activities of daily living and disrupt multiple domains of life, including physical functioning, psychological status, emotional state, cognitive function, intimate relationships, lifestyle status, usual role activities, social contact and support. By inflicting profuse limitations in numerous aspects of life, HF exerts a profoundly negative impact on health-related quality of life (HRQOL). It is therefore not surprising that patients with HF display lower levels of HRQOL compared not only to the general healthy population but also to patients suffering from other chronic diseases. On top of this, poor HRQOL in patients with HF becomes an even greater concern considering that it has been associated with unfavorable long-term outcomes and poor prognosis. Nevertheless, HRQOL may differ significantly among patients with HF. Indeed, it has consistently been reported that women with HF display poorer HRQOL compared to men, while younger patients with HF tend to exhibit lower levels of HRQOL than their older counterparts. Moreover, patients presenting with higher New York Heart Association (NYHA) functional class (III-IV) have significantly more impaired HRQOL than those in a better NYHA class (I-II). Furthermore, most studies report worse levels of HRQOL in patients suffering from HF with preserved ejection fraction (HFpEF) compared to patients with HF with reduced ejection fraction (HFrEF) or HF with mildly reduced ejection fraction (HFmrEF). Last, but not least, differences in HRQOL have been noted depending on geographic location, with lower HRQOL levels having been recorded in Africa and Eastern Europe and higher in Western Europe in a recent large global study. Based on the observed disparities that have been invariably reported in the literature, this review article aims to provide insight into the underlying differences in HRQOL among patients with HF. Through an overview of currently existing evidence, fundamental differences in HRQOL among patients with HF are analyzed based on sex, age, NYHA functional class, ejection fraction and geographic location or ethnicity.

Aim: To evaluate health-related quality of life (HRQoL) in cemiplimab-treated patients with locally advanced basal cell carcinoma (laBCC). Materials & methods: Eighty-four patients with laBCC received cemiplimab 350 mg every 3 weeks (up to 9 cycles). HRQoL was assessed using the European Organization for Research and Treatment of Cancer Quality of Life Core 30 (QLQ-C30) and Skindex-16 questionnaires at baseline and each cycle. Mixed-effects repeated-measures models evaluated change from baseline across cycles. Results: Clinically meaningful improvement or maintenance was reported by 62–90% of patients on QLQ-C30 scales and by approximately 80% on Skindex-16 scales at Cycle 2, with consistent results at Cycle 9 except fatigue. Conclusion: Most cemiplimab-treated patients with laBCC reported improvement or maintenance of HRQoL with low symptom burden except fatigue. Clinical Trial Registration:ClinicalTrials.gov identifier NCT03132636, registered 28 April 2017. Plain Language Summary Locally advanced basal cell carcinoma (laBCC) is a type of skin cancer that has the potential to invade surrounding tissues including bone, cartilage, nerve and muscle. Cemiplimab-rwlc is approved in the US for patients with laBCC following a therapy called hedgehog inhibitor (HHI) treatment or for whom HHIs are not appropriate. In a Phase II clinical trial, intravenous (in the vein) cemiplimab 350 mg every 3 weeks for up to nine treatment cycles resulted in clinically meaningful antitumor activity in patients with laBCC who progressed on or were intolerant to HHIs. This analysis evaluated health-related quality of life, symptom burden, emotions and functional status in these patients using the European Organization for Research and Treatment of Cancer Quality of Life Core 30 (QLQ-C30) and Skindex-16 questionnaires. Baseline scores (scores at the start of the clinical trial) showed moderate to high levels of functioning and low symptom burden that, except for fatigue, were maintained or improved over the course of cemiplimab treatment. These results show that despite the presence of fatigue, health-related quality of life and functional status were maintained with cemiplimab across the study duration. Tweetable Abstract In patients with locally advanced basal cell carcinoma treated with cemiplimab every 3 weeks for nine treatment cycles, health-related quality of life and functional status were maintained despite the presence of fatigue. Article highlights In a Phase II trial, intravenous cemiplimab 350 mg every 3 weeks for up to nine treatment cycles resulted in clinically meaningful antitumor activity in patients with locally advanced basal cell carcinoma who progressed on or were intolerant to hedgehog inhibitors. Since an important component in cancer clinical trials is the measurement of patient-centric outcomes, this analysis evaluated patient-reported health-related quality of life (HRQoL) among participants in the clinical trial. HRQoL was evaluated using the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (QLQ-C30), which consists of a global health status/quality of life (GHS/QoL) scale, five functional scales and eight symptom scales; and the Skindex-16, which assesses the impact of skin disease on HRQoL based on symptom, emotional and functional subscales. Mixed-effects repeated-measures models were used to estimate overall least-squares (LS) mean (95% confidence interval [CI]) change from baseline across Cycles 2–9; absolute changes ≥10 points from baseline were considered clinically meaningful. Overall changes from baseline indicated maintenance for QLQ-C30 GHS/QoL, functioning and symptom scales, except for clinically meaningful worsening of fatigue (LS mean change: 12.0; 95% CI: 4.3–19.6). Clinically meaningful improvement or maintenance on QLQ-C30 GHS/QoL, functioning and symptom scales were reported at Cycle 2 by 88%, 69–81% and 62–90% of patients, respectively, with similar proportions at Cycle 6 (∼1 year of treatment) and consistent results at Cycle 9 except for fatigue. On the Skindex-16, overall change showed clinically meaningful improvement on the emotional subscale (LS mean change, -13.8; 95% CI: -21.4 to -6.2), with maintenance on symptom and functional subscales; clinically meaningful improvement or maintenance across all three subscales was reported by approximately 80% of patients at Cycle 2 that was generally maintained at Cycles 6 and 9. These results show that most patients with laBCC treated with cemiplimab reported clinically meaningful improvement or maintenance in GHS/QoL and functioning while maintaining low symptom burden, except for fatigue. [ABSTRACT FROM AUTHOR]

Purpose: The aim of this study was to determine how preoperative health‐related quality of life (HRQoL) is affected by the duration of the wait time (WT) for anterior cruciate ligament reconstruction (ACLR) once a decision is made to proceed with surgery. Methods: This was a multi‐centre prospective cohort study. One hundred and twenty‐two patients 14 years of age and above waiting for ACLR completed the International Knee Documentation Committee (IKDC) demographic, current health assessment and subjective knee evaluation (SKF) forms on the day of decision to operate and the day of surgery. Changes in scores were analyzed for the entire cohort, adjusted for WTs and a subset was compared for patients with isolated anterior cruciate ligament (ACL) tears and ACL tears with concurrent meniscal involvement. Changes in HRQoL scores from the day of the decision to operate to the 9‐month postoperative appointments were also assessed. Results: Energy/Fatigue (p < 0.05), Pain (p < 0.05), General Health (p < 0.05) and the IKDC‐SKF Score (p < 0.05) significantly increased between the day of the decision to operate and the day of surgery. Only the change in IKDC‐SKF score remained significantly higher after adjusting for WT. Baseline HRQoL scores significantly improved by the 9‐month postoperative appointment. Conclusion: The length of time waiting for ACLR did not adversely influence HRQoL in this study. However, low preoperative HRQoL and the significant improvement in HRQoL of patients followed postoperatively suggest that timely surgery is beneficial for this patient population. Level of Evidence: Level II. [ABSTRACT FROM AUTHOR]

Individuals with rare skeletal disorders like Multiple Osteochondromas and Ollier Disease often experience physical and psychological burdens. Adventure therapy, with activities like sailing in outdoor settings, promotes personal growth and psychological well-being, potentially improving health-related quality of life (HRQoL). This study aimed to evaluate the impact of a sailing program on health-related quality of life and participant satisfaction in individuals with Multiple Osteochondromas and Ollier Disease. A quasi-experimental one-group pre-post design was employed, with HRQoL assessed using the EQ-5D® instrument and participant satisfaction measured via a feedback survey. Data were collected before and after the five-day sailing program conducted in the Mediterranean Sea in 2022 and 2023, involving participants diagnosed with Multiple Osteochondromas and Ollier Disease. Statistical analyses were performed using the Wilcoxon signed-rank test and McNemar's test for paired data. A significance level of p < 0.05 and p < 0.10 was considered. A total of 25 participants, predominantly male (52%), with a median age of 16 years (ranking from 11 to 31), were included in the study. The sailing program had mixed impact on HRQoL. Specifically, individuals who were female (p = 0.03), aged 16 and older (p = 0.04), with higher educational attainment (p = 0.10) or stronger self-management (p = 0.09), resilience (p = 0.01) and self-engagement (p = 0.09) skills experienced enhanced HRQoL. Conversely, other participants exhibited an increase in self-care difficulties (p = 0.02) and a trend towards worsening pain/discomfort (p = 0.38). Overall satisfaction with the program was high, with 90% of participants expressing satisfaction. This is the first study which examined HRQoL in Multiple Osteochondromas and Ollier Disease patients within an outdoor adventure therapy setting. Findings suggest that adventure therapy, integrated into healthcare strategies, may offer a valuable complement to conventional treatments for rare skeletal disorders. Future research, including randomized controlled trials, are necessary to confirm these results and develop robust interventions for improving the well-being in this population. [ABSTRACT FROM AUTHOR]

Spain was close to meeting the 90–90–90-treatment target set by UNAIDS. However, data on health care quality regarding people with HIV and their health-related quality of life (HRQoL) after the COVID-19 pandemic onset is scarce. By considering the perspective of people with HIV and HIV specialists, we aimed to determine some aspects of the quality of care in Spain, such as access to health resources or satisfaction with primary and speciality care, and assess people with HIV health-related quality of life. Ex post facto cross-sectional surveys were administered to 502 people with HIV and 101 HIV clinicians. Unmet needs related to healthcare system and healthcare resources access and to antiretroviral treatment administered by hospital pharmacies were detected. There was also room for improvement in the primary care service delivery and in various aspects concerning people's with HIV HRQoL. About one-fourth of them experienced stigmatisation in the healthcare setting, which was significantly related to HRQoL. Women, heterosexual participants and those with problems accessing the healthcare system scored poorer in the HRQoL scales. Moreover, according to our data, HIV specialists did not seem to be fully aware of patients' with HIV needs and overestimated their HRQoL. [ABSTRACT FROM AUTHOR]

Objective: To assess the impact of ejaculatory dysfunction (EjD; failure of emission or retrograde ejaculation) on health‐related quality of life (HRQoL) after retroperitoneal lymph node dissection (RPLND) for testicular cancer and explore the efficacy of pseudoephedrine hydrochloride as treatment. Patients and Methods: In a single arm, phase II trial, patients at ≥6 months after RPLND were invited to complete patient‐reported outcome measures (European Organisation for Research and Treatment of Cancer [EORTC] quality of life questionnaire [QLQ]‐30‐item core, EORTC QLQ‐testicular cancer‐26, and Brief Male Sexual Function Inventory) evaluating HRQoL and sexual function in follow‐up (ACTRN12622000537752/12622000542796). If EjD was reported, post‐ejaculatory urine ± semen analysis was undertaken. In eligible patients, pseudoephedrine hydrochloride 60 mg was administered orally every 6 h for six doses. The primary endpoint was sperm count >39 million sperm/ejaculate (>5th centile) following treatment. The trial was powered to detect a clinically relevant 36% achieving sperm count of >39 million sperm/ejaculate. Secondary endpoints included semen volume >1.5 mL, total motile sperm count, safety, and HRQoL impacts. Results: Of the 58 patients enrolled, the median (interquartile range [IQR]) age was 35 (29–41) years, with a median (IQR) of 37 (18–60) months from RPLND. EjD was reported in 33 (57%), including 27/52 (52%) receiving follow‐up at our centre. There were no differences in global HRQoL; however, role functioning (P = 0.045), sexual problems (P < 0.005), and sexual enjoyment (P = 0.005) was poorer if EjD was present. In all, 24/33 (73%) patients with EjD consented to pseudoephedrine treatment. Of 22 evaluable patients, four (18%) achieved a sperm count of >39 million/ejaculate (P = 0.20), and four (18%) had a semen volume of >1.5 mL (P = 0.20). There was a mean increase of 105 million sperm/ejaculate (P = 0.051) and 1.47 mL increase in semen volume (P = 0.01). No safety concerns arose. Conclusion: Ejaculatory dysfunction is common after RPLND but did not impact global HRQoL in our cohort. Pseudoephedrine improved EjD for some; however, its efficacy was lower than expected. Pseudoephedrine may be considered on an individualised basis. [ABSTRACT FROM AUTHOR]

Objectives: Chronic diseases impact people's quality of life (QoL). Behçet's disease (BD) is a multisystemic chronic disease characterized by vasculitis of various vessels. We aimed to assess QoL in paediatric BD (PEDBD) patients and their parents. Methods: We conducted a cross-sectional study from June to December 2022, including PEDBD patients meeting classification criteria. We recorded clinical characteristics and assessed QoL using PedsQL for patients and WHOQOL-Bref for parents. Results: A study of 38 patients (60.5% girls, 39.5% boys), median age 15.5 years (range 10–17), with oral aphthae and various mucocutaneous symptoms: genital ulcers (78.9%), pseudofolliculitis (76.3%), erythema nodosum (23.6%), and some with uveitis (13.1%), vascular (13.1%), neurological (10.5%), and gastrointestinal (5.2%) involvement. All were in remission under treatment. Median PedsQL scores: total 74.5 (range 40–94.8), physical health 76.5 (43–100), psychosocial health 75 (25–92); 14 patients scored below cutoff. Girls had lower physical health scores (P = .004), and disease duration correlated negatively with PedsQL score (r = -0.648, P = .001). Median WHOQOL score for parents: 50 (25–100), with 20 scoring below cutoff. Conclusion: One-third of PEDBD children and over half of their parents had low QoL. Disease duration and gender, as with many chronic illnesses, correlated with QoL in PEDBD. [ABSTRACT FROM AUTHOR]

Objective: This study investigated the predictive value of illness and treatment beliefs for patient satisfaction and health-related quality of life (HRQOL) in adolescents receiving inpatient rehabilitation treatment. In addition, we examined the relationship between fulfilled rehabilitation-related treatment expectations and patient satisfaction. Method: In this longitudinal study (recruitment between April 2019 and March 2020), 170 participants (M = 14.3 years [SD = 1.6]) answered self-report questionnaires before and at the end of rehabilitation (6 weeks later). We applied multiple hierarchical regression analyses, controlling for sociodemographic and diagnoses variables. Results: The results showed fulfilled expectations of treatment success and sustainability to be a significant predictor of patient satisfaction (p <.01). The illness belief dimension of emotional representation predicted HRQOL (p <.01). Rehabilitation-related treatment beliefs were not predictive of any outcome. Conclusion: This study provides a first insight into the relationships between these constructs in the context of inpatient pediatric rehabilitation. However, future research is needed to further examine illness and treatment beliefs in this specific treatment setting. Practical implications concern the incorporation of children's and adolescents' beliefs into treatment management to optimize rehabilitation outcomes. Impact and Implications: This is the first study that examines the impact of illness beliefs, treatment beliefs, and fulfilled treatment expectations on patient satisfaction and health-related quality of life in adolescents with chronic diseases. While pediatric treatment beliefs have primarily been studied in relation to medication treatment, we captured adolescents' treatment beliefs regarding inpatient rehabilitation treatment with a multidimensional approach. Possible practical implications include the exploration of pediatric patients' treatment expectations at the beginning of rehabilitation, the provision of appropriate information and (if necessary) the correction of unrealistic expectations, as well as interventions addressing children's and adolescents' emotional representations about their illness. [ABSTRACT FROM AUTHOR]

Objective: To assess the unmet needs of South Africans with axial spondyloarthritis (axSpA) focusing on the patient journey, functional disability, and health-related quality of life. Methods: One hundred forty-six South African axSpA patients completed the International Map of Axial Spondyloarthritis (IMAS) online survey. Patient journey, functional disability, activities of daily living, and psychological stress were analyzed in relation to socio-demographic characteristics, disease activity, diagnostic delay, extra-musculoskeletal manifestations, and drug therapy. Results: Majority were female (82.2%) and Caucasian (89.7%) and the mean age of participants, age at onset of initial symptoms, and diagnostic delay were 44.7, 26.7, and 10.8 years, respectively. Participants reported a mean of 3.4 visits to healthcare professionals prior to a definitive diagnosis of axSpA, mostly made by rheumatologists (77.9%). Active disease (BASDAI ≥ 4) was reported by 87%, 69.9% suffered from psychological distress (general health questionnaire-12 score ≥ 3), and more than two-thirds suffered functional limitations in daily, personal, and social activities. Multivariable logistic analysis showed that active disease was more common in females [OR (95% CI) = 4.3 (1.2–15.2)] and was associated with greater functional limitation [OR (95% CI) = 1.1 (1.0–1.2)]. Conclusion: Of all the regions assessed in the IMAS (n = 5557 participants, 27 countries), South Africans reported the longest delay in diagnosis. The South African patient journey depicts a process burdened with diagnostic challenges and delays, coupled with patients experiencing significant personal and social limitations. These results emphasize the urgent need to establish local diagnostic and treatment guidelines for axSpA in South Africa, to reduce diagnostic delay, and to control disease activity associated with functional limitation in axSpA. Key Points • Axial spondyloarthritis (axSpA) in South Africans is associated with significant limitations in physical, mental, and social functioning. • First study to describe the unmet needs of South African patients with axSpA. [ABSTRACT FROM AUTHOR]

Purpose: Systemic Lupus Erythematosus (SLE) significantly affects both the quality of life related to health and non-health aspects. This study aims to evaluate the psychometric properties of the Persian version of the Lupus_PRO questionnaire, version 1.7. The questionnaire serves as a specific self-report outcome scale for assessing the treatment outcomes of Lupus disease. Methods: The Lupus_PRO questionnaire, version 1.7, was translated into Persian using the standard forward-backward method. After being completed by 218 patients with Lupus, the psychometric properties of the instrument were examined. The Convergent and Discriminant Validity of the scale were assessed using Average Variance Extracted and Cross Loadings, respectively. The construct validity of the questionnaire was also evaluated through Confirmatory Factor Analysis (CFA). Cronbach's alpha was calculated to assess the reliability of the questionnaire dimensions. Findings: Out of the 218 patients with lupus who participated in the current study, 13 (6%) were male, and 205 (94%) were female. The mean (SD) age of participants was 40.29 (10.94) years. The Average Variance Extracted (AVE) for HRQOL and Non-HRQOL constructs, except for the Coping and Cognition dimension, was greater than 0.50, indicating satisfactory convergent validity. The interdimensional correlation coefficient (Discriminant Validity) for each dimension with other questionnaire dimensions was less than 0.10, indicating that the questionnaire has good convergent and discriminant validity. Additionally, the results of the Confirmatory Factor Analysis (CFA) indicated that the questionnaire was a suitable fit. In terms of reliability, Cronbach's alpha for the various questionnaire dimensions ranged from 0.51 to 0.91, indicating good internal consistency. Conclusion: The Persian version of the Lupus_PRO questionnaire, version 1.7, demonstrates acceptable validity and reliability in the Iranian population. This instrument can effectively measure various aspects of the quality of life in patients with lupus. [ABSTRACT FROM AUTHOR]

Purpose: Presenting a chain mediation model to investigate whether mobile phone dependence results in a reduction in health-related quality of life (HRQoL) among Chinese college students, through the mediating effect of chronotype and sleep quality. Design and Setting: A cross-sectional survey was conducted on students from a Chinese university using a validated structured questionnaire. Sample: 2014 freshmen. Measures: The study measured the students' level of mobile phone dependence using the Self-rating Questionnaire for Adolescent Problematic Mobile Phone Use. Chronotype and sleep quality were measured by the Chinese version of the Morningness-Eveningness Questionnaire (MEQ) and the Pittsburgh Sleep Quality Index (PSQI), respectively. HRQoL was evaluated using the five-level EuroQol five-dimensional questionnaire (EQ-5D-5L), including a descriptive system and a visual analog scale (VAS). Analysis: Descriptive statistical analysis, correlation analysis, and mediation analysis. Results: Mobile phone dependence had a significant negative effect on HRQoL as indicated by both the EQ-5D-5L index score and EQ-VAS score (P <.001 for both). Additionally, it was found to significantly predict chronotype (MEQ score) (β = −.546, P <.001) and sleep quality (PSQI score) (β =.163, P <.001). Chronotype negatively predict sleep quality (β = −.058, P <.001), and sleep quality was a significant negative predictor of HRQoL (EQ-5D-5L index score, β = −.008, P <.001; EQ-VAS score, β = −1.576, P <.001). Conclusion: Mobile phone dependence negatively impacts students' HRQoL through chronotype and sleep quality, and there is a chain mediating effect. Students should consider making lifestyle changes to improve their HRQoL and promote health. [ABSTRACT FROM AUTHOR]

Objectives: We aimed to characterise baseline disease and treatment burden in a large population with haemophilia A/B, both with (HAwI/HBwI) and without (HA/HB) inhibitors. Methods: The prospective, non‐interventional explorer6 study included patients ≥12 years old with severe HA, severe/moderate HB or HAwI/HBwI of any severity, treated according to local standard of care (excluding previous/current exposure to concizumab or emicizumab). Baseline characteristics and historical clinical data were collected and patient‐reported outcomes, including treatment burden, were assessed. Results: The explorer6 study enrolled 231 patients with haemophilia (84 HAwI/HBwI) from 33 countries. At baseline, patients with HA/HB treated with prophylaxis had the lowest median annualised bleeding rates (ABRs; 2.0), irrespective of haemophilia type; of these patients, 27.5% (HA) and 31.4% (HB) had target joints. Patients with HAwI/HBwI treated episodically reported the highest treatment burden. Of these patients, 28.5% (HAwI) and 25.1% (HBwI) performed sports activities in the month before screening. Conclusion: Despite receiving routine clinical care, historical and baseline information from patients enrolled in explorer6 showed that patients with HA/HB treated episodically and patients with HAwI/HBwI had higher ABRs, higher treatment burden and participated in sports less than those with HA/HB treated with prophylaxis. Emerging treatments could be beneficial in addressing these unmet medical needs. [ABSTRACT FROM AUTHOR]

Background: X-linked hypophosphatemia (XLH) is a rare inherited phosphate-wasting disorder associated with bone and dental complications. Health-related quality of life (HRQoL) is reduced in XLH patients on conventional treatment with phosphate supplements and active vitamin D, while information on patients treated with burosumab is rare. Methods: HRQoL was assessed in 63 pediatric XLH patients participating in a prospective, observational study and patient registry in Germany using the KIDSCREEN-52 survey instrument and standardized qualitative interviews. Results: The median age of the XLH patients was 13.2 years (interquartile range 10.6 – 14.6). At the time of the survey, 55 (87%) patients received burosumab and 8 (13%) conventional treatment. Forty-six patients (84%) currently being treated with burosumab previously received conventional treatment. Overall, HRQoL was average compared to German reference values (mean ± SD: self-report, 53.36 ± 6.47; caregivers' proxy, 51.33 ± 7.15) and even slightly above average in some dimensions, including physical, mental, and social well-being. In general, XLH patients rated their own HRQoL higher than their caregivers. In qualitative interviews, patients and caregivers reported that, compared with conventional therapy, treatment with burosumab reduced stress, bone pain, and fatigue, improved physical health, and increased social acceptance by peers and the school environment. Conclusions: In this real-world study in pediatric XLH patients, HRQoL was average or even slightly above that of the general population, likely due to the fact that the vast majority of patients had their treatment modality switched from conventional treatment to burosumab resulting in improved physical health and well-being. [ABSTRACT FROM AUTHOR]

Background: Ventricular assist device (VAD) implantation has become an alternative treatment for patients with end-stage heart failure. In Germany, valid and reliable instruments to assess health-related quality of life in patients with VAD are lacking. Objective: The aim of this study was to present the psychometric validation of the German version of the Quality of Life with a Ventricular Assist Device questionnaire. Methods: In a multicenter, cross-sectional study, 393 participants (mean age, 58.3 years; 85.8%male, 60.3%bridge to transplant, and 72.8%living with VAD for =2 years) completed the German Quality of Life with a Ventricular Assist Device questionnaire of physical, emotional, social, cognitive, and meaning/spiritual domains. Item and confirmatory factor analyses were conducted to test item difficulty and discrimination and the underlying structure, respectively. To examine internal consistency, Cronbach a was assessed. Convergent construct validity was tested using the Kansas City Cardiomyopathy Questionnaire and the Patient Health Questionnaire-9. Readability was examined using Flesch Reading Ease index and Vienna Factual Text Formula. Results: The Quality of Life with a Ventricular Assist Device showed reasonable itemdifficulty (Ptotal = .67) and mostly moderate to high discriminatory power (rit > 0.30). In confirmatory factor analysis, root-mean-square error of approximation (0.07) was acceptable for model fit, but no other indices. Acceptable internal consistency was found (a = 0.79), with the exception of the cognitive domain (α = 0.58). The overall questionnaire and single domains demonstrated convergent validity (r = 0.45, P < .001). The questionnaire showed adequate readability (Flesch Reading Ease, 64.11; Vienna Factual Text Formula, 6.91). Conclusion: Findings indicate a promising standardized clinical instrument to assess health-related quality of life in patients with VAD. [ABSTRACT FROM AUTHOR]

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Introduction: The correlation between body mass index (BMI) and utility in participants with obesity was assessed using health-related quality-of-life data collected in two weight loss intervention studies, SCALE and STEP 1. Methods: Short Form Health Survey 36-Item (SF-36) scores from SCALE and STEP 1 were mapped to EuroQoL-5 dimensions-3 levels (EQ-5D-3L) using an established algorithm to derive utilities for the UK. SF-36 scores from STEP 1 were converted into Short Form 6 dimension (SF-6D) utilities for Portugal using the tool developed by the University of Sheffield. The correlation between baseline BMI and utility was assessed by multiple linear regression analyses, controlling for demographic and clinical parameters. Results: A higher baseline BMI correlated with lower EQ-5D-3L and SF-6D utilities, although the trend was non-significant. Assuming linearity between BMI ranges 30–40 kg/m2, an additional unit of BMI correlated with 0.0041 and 0.0031 lower EQ-5D-3L scores in SCALE and 0.0039 and 0.0047 lower EQ-5D-3L and 0.0027 and 0.0020 lower SF-6D scores in STEP 1 for men and women, respectively. Conclusion: In individuals with comparable demographic characteristics and weight-related comorbidities, a 1 unit change in BMI leads to a difference of up to 0.005 in utility indices. Trial Registration: ClinicalTrials.gov identifiers: SCALE (NCT01272219) and STEP 1 (NCT03548935). Plain Language Summary: Cost-effectiveness analyses compare health benefits and costs between treatments to inform decisions on healthcare resource allocation. Health benefits are typically quantified as quality-adjusted life-years (QALYs) gained. The calculation of QALYs relies on health-related quality-of-life (HRQoL) data, which are collected from participants. However, to allow comparisons across multiple interventions and diseases, HRQoL needs to be converted into a standardized, generic measure, i.e., a utility index ranging from 0 (equivalent to death) to 1 (perfect health). In this study, HRQoL data from the SCALE and STEP 1 clinical trials were converted into utility indexes and analyzed against participants' weight at study start, expressed as body mass index (BMI, kg/m2). Our study indicates that there is a negative correlation between BMI and health utility at a population level whereby an additional unit of BMI, within the range of 30–40 kg/m2, was consistently correlated with an up to 0.005 worsening in the utility index across men and women. The estimated effect size was small, indicating that BMI alone may not explain the differences in participants' HRQoL and general population evaluation of these. [ABSTRACT FROM AUTHOR]

Background: Transfusion-dependent β-thalassemia (TDT) is a severe inherited disorder. Without regular treatment, patients with TDT experience complications that can significantly shorten life expectancy and severely impact both their quality of life and that of their families. The condition has attracted significant attention in global health discussions. Due to the challenges of blood supply shortages, the high costs of iron chelation therapy, and hematopoietic stem cell transplantation (HSCT), TDT presents a serious health risk to patients and imposes a substantial burden on families and society. However, research on the health-related quality of life (HRQoL) of thalassemia patients in China remains limited. This study evaluated the factors affecting the HRQoL of these patients, with the goal of developing strategies to improve their quality of life. Methods: In this cross-sectional study, children with TDT were recruited from five treatment centers in Guangxi, a province with a high prevalence of thalassemia in China. Structured questionnaires were employed to gather relevant data on sociodemographic variables, disease characteristics, treatments, and associated costs. The HRQoL was assessed using the Transfusion-Dependent Quality of Life (TranQoL) questionnaire, with a proxy version for patients aged 0–11 years and a child version for those aged 12–18 years. Results: The study included 418 participants, yielding an overall TranQoL score of 60.6 ± 16.3 among thalassemia patients. Multiple linear regression analysis revealed a negative correlation (P < 0.05) between overall TranQoL scores and several factors: increasing patient age, the presence of multiple thalassemia patients within a family, and undergoing HSCT. Conversely, adherence to regular treatment was positively correlated with higher TranQoL scores (P < 0.05). Conclusion: The study demonstrates that HRQoL among Chinese patients with TDT is at a low level. Age, treatment adherence, family support, and socioeconomic status were identified as key determinants influencing HRQoL. It is essential to further enhance and optimize health insurance policies and medical services to support comprehensive treatment strategies for these patients. [ABSTRACT FROM AUTHOR]

Background: The present analysis aimed to assess the mediating role of psychosocial and behavioural factors in socio-economic inequalities in health-related quality of life (HRQoL) among children and adolescents. Methods: Cross-sectional data was drawn from the randomly selected SEROCoV-KIDS cohort study in Geneva, Switzerland. Associations of socio-economic conditions (parents' highest education, household financial situation) with HRQoL, psychosocial (parent–child relationship, school difficulties, friends, extracurricular activities) and behavioural factors (screen time, physical activity, green spaces time, sleep duration), along with associations of psychosocial and behavioural factors with HRQoL, were evaluated with generalized estimating equations. Counterfactual mediation analyses were conducted to test pathways linking socio-economic conditions to HRQoL. Results: Of 965 children and 816 adolescents, those with disadvantaged financial circumstances were more likely to have a poor HRQoL (adjusted Odds Ratio [aOR]: 3.80; 95% confidence interval [CI]: 1.96–7.36 and aOR: 3.66; 95%CI: 2.06–6.52, respectively). Psychosocial characteristics mediated 25% (95%CI: 5–70%) and 40% (95%CI: 18–63%) of financial disparities in HRQoL among children and adolescents, respectively. Health behaviours were weakly patterned by socio-economic conditions and did not contribute to financial differences in HRQoL. Conclusions: These findings provide empirical evidence for mechanisms explaining socio-economic disparities in child HRQoL and could inform interventions aimed to tackle health inequalities. [ABSTRACT FROM AUTHOR]

AbstractBackgroundObjectivesMethodsResultsConclusionsClostridioides difficile is a major burden for both healthcare systems and the patients. Faecal microbiota transplantation (FMT) is becoming more common as a treatment since it reduces the risk of recurrent Clostridioides difficile infection (rCDI).To evaluate how treatment with FMT is affecting the health-related quality of life (HRQoL) in patients with rCDI.A prospective observational cohort study was conducted where patients who were offered FMT as a treatment for rCDI were asked to fill in a questionnaire based on the Short Health Scale (SHS) and EuroQol 5-Dimensions 5-Levels (EQ-5D-5L) about their HRQoL before and after treatment.Patients with rCDI had poor HRQoL, which improved following FMT.Since FMT cures, reduces the risk of new recurrences of CDI and improves the HRQoL of the patients, it should be offered as a treatment for patients with rCDI. Also, SHS is a useful and reliable instrument for measuring HRQoL in patients with rCDI. [ABSTRACT FROM AUTHOR]

ABSTRACT Aims Background Methods Results Conclusion This study evaluated health‐related quality of life (HRQOL) and job satisfaction among Kazakh nurses and investigated the relationship between HRQOL and job satisfaction.Nurses' HRQOL may, directly and indirectly, affect their job satisfaction, which could subsequently result in poorer productivity and quality patient care.A cross‐sectional research design utilizing a standardized questionnaire was employed among 615 nurses working at the University Medical Center in Astana, Kazakhstan.Nurses generally reported moderate HRQOL and low job satisfaction. Marital status and the number of children were significant predictors of high HRQOL. Married nurses had lower job satisfaction than single nurses. Nurses' number of children contributed to an increase in job satisfaction. Experiencing better environmental health may lead to greater general, intrinsic and extrinsic job satisfaction among nurses. Positive physical health is associated with higher levels of extrinsic and general job satisfaction. Better social health is linked to better intrinsic and general job satisfaction, whereas positive psychological health is related to better intrinsic job satisfaction.This investigation provided evidence of the influence of HRQOL on nurses' job satisfaction in Kazakhstan. Healthcare facilities can create organizational cultures and working environments that prioritize the well‐being of healthcare workers. [ABSTRACT FROM AUTHOR]

Background and aims: The NICE Highly Specialised Technology (HST) programme evaluates interventions for very rare conditions within the UK. This review aimed to analyse previous NICE HST appraisals and determine commonly used methods to overcome uncertainties relating to health-related quality of life (HRQoL) and disease burden for people with rare diseases and their caregivers. The review also aimed to identify areas where further methodological development is required. Approach and results: A targeted review of all previous NICE HST appraisals published by the 28th February 2022, in which at least one committee meeting had taken place, was conducted. A total of 24 appraisals were included (17 fully completed and seven ongoing). Data were extracted by one reviewer. The evidence review group (ERG) and committee comments were compared against the NICE reference case and synthesised to identify the following methodological uncertainties that occurred most commonly: using alternatives to the EuroQol-5 Dimension (EQ-5D), sourcing HRQoL data from single-arm studies, measuring caregiver disutilities and estimating disease burden. Conclusions: This review has highlighted the need for new methodology to reflect the impact of the diseases on people with rare diseases and their families. The review identified the following methodological requirements: alternative approaches that should be used when EQ-5D is not appropriate, methods to evaluate paediatric HRQoL and methods to quantify disease burden. This review also highlights the need to establish clear recommendations on the estimation of utilities across different rare diseases. [ABSTRACT FROM AUTHOR]

Objective: To investigate the prognostic value of baseline health-related quality of life (HRQOL) for patients with intermediate-risk localized prostate cancer (IR-PCa) undergoing radical prostatectomy (RP). Methods: 4780 patients with IR-PCa according to NCCN risk stratification were identified from a prospectively maintained database. All patients were treated with RP and had prospectively assessed baseline HRQOL. Main outcomes were oncologic endpoints metastasis-free survival (MFS); biochemical recurrence free survival (BRFS) and overall survival (OS). Multivariable Cox regression models assessed prognostic significance of baseline global health status (GHS) on survival outcomes. Harrell's discrimination C-index was applied to calculate the predictive accuracy of the model. Decision curve analysis (DCA) tested the clinical net benefit associated with adding the GHS domain to our multivariable model (p < 0.05). Results: Median follow-up was 51 months. Multivariable analysis confirmed baseline GHS as an independent predictor for increased MFS (HR 0.976, 95%CI 0.96–0.99; p < 0.001), increased BRFS (HR 0.993, 95%CI 0.99–1.00; p = 0.027) and increased OS (HR 0.969, 95%CI 0.95–0.99; p = 0.002), indicating a relative risk reduction of 2.4% for MFS, 0.7% for BRFS and 3.1% for OS per 1-point increase of baseline GHS. Baseline HRQOL improved discrimination in predicting MFS, BRFS and OS. DCA revealed a net benefit over all threshold probabilities. Conclusions: We found baseline HRQOL to substantially improve risk stratification for the heterogeneous cohort of IR-PCa. Baseline HRQOL accurately predicts increased MFS, BRFS and OS. Our findings therefore support the role of preoperative HRQOL as an adjunct to established prognosticators for IR-PCa, potentially facilitating guidance of therapy. [ABSTRACT FROM AUTHOR]

Research on resilience helps parents promote health-related quality of life (HRQOL) and mitigate stress associated with raising a child with disabilities. Therefore, understanding how resilience works for parents to inform future interventions and services is important. However, the mutual relations among parental stress, family resilience, and parents' HRQOL for families of children with autism spectrum disorders (ASD) have not been investigated in the literature. This study examined the associations among these three variables for these families and would benefit the parents as well as their children. A sample of 1003 parents of children with ASD reporting both parents' HRQOL from a national dataset was included in this study. This dataset surveyed parents who had a child aged 0–17 in the household in the United States. The investigated latent variables were constructed by the items selected from the survey. Results showed that parental HRQOL could be directly affected by parental stress β = − 0.19, p <.001 and family resilience, β = 0.31, p <.001. Parental stress could be directly affected by family resilience, β = − 0.29, p <.001. Parental HRQOL could be indirectly affected by family resilience through parental stress, β = 0.055, SE = 0.013, p <.001, 95% CI = 0.034 to 0.084. In conclusion, family members could rely on and share the burden and responsibility for each other to increase their family resilience, which could assist parents to reduce their parental stress and directly and through the reduction of their parental stress indirectly increase their HRQOL. [ABSTRACT FROM AUTHOR]

The health-related quality of life (HRQOL) of college students is not promising and needs to be improved through effective interventions. This study aimed to investigate the associations of nutrition literacy (NL) with HRQOL and anxiety among college students, and to identify the role of anxiety in the relationship between NL and HRQOL. The cross-sectional survey was conducted via the "Wenjuanxing" platform from September to November 2023. The Food and Nutrition Literacy Questionnaire (FNLQ), the Generalized Anxiety Disorder (GAD-7) diagnostic tool and the SF-12 scale were used to assess NL, anxiety, and HRQOL, respectively. Logistic regression models, mediation analysis, additive and multiplicative interaction analyses were used. 2066 college students participated in the analysis. After adjusting for potential confounders, we found that college students with higher NL had higher HRQOL (OR = 2.52, 95% CI: 2.09–3.03, p < 0.001) and a lower risk of anxiety (OR = 0.53, 95% CI: 0.39–0.73, p < 0.001). Additionally, anxious college students had lower HRQOL (OR = 0.16, 95% CI: 0.11–0.24, p < 0.001). Furthermore, mediation analysis confirmed that anxiety was a partial mediator of the relationship between NL and HRQOL (β = 0.600, 95% CI: 0.406–0.779/0.430–0.818). Significant additive interactions were found between NL and Anxiety (RERI = 6.96, 95% CI: 2.74–11.17; AP = 0.51, 95% CI: 0.37–0.64; SI = 2.21, 95% CI: 1.58–3.07). Higher levels of NL are associated with better HRQOL and lower anxiety among college students. Additionally, anxiety partially mediated the relationship between NL and HRQOL. Furthermore, there is a synergy between NL and anxiety. [ABSTRACT FROM AUTHOR]

Background: In Vietnam, there is a paucity of health-related quality of life (HRQoL) research on people with depression as well as a lack of evidence on supported self-management (SSM) intervention for depression on HRQoL. This study aimed to compare the HRQoL of people with depression and age-matched people in the Vietnamese population, evaluate the effects of Tele-SSM intervention on HRQoL, and examine the association between the changes in HRQoL score and mental health well-being (depression, anxiety, and stress). Methods: This study was a pre- and post-study involving Vietnamese adults aged 18–64 who had depression symptoms (score ≥ 5 points in the PHQ-9). Participants (N = 58) completed Tele-SSM—a supported self-management intervention incorporating cognitive behavioral therapy and non-violent communication and using a task-shifting approach. To compare with the general population, we conducted a 1-to-1 matching by age with an EQ-5D-5L valuation study with a nationally representative sample of the Vietnamese general population. Results: HRQoL was significantly impaired in people with depression compared to the age-matched general population. Regarding health profile, participants reported the most difficulties in usual activities, pain/discomfort, and anxiety/depression dimensions. Significant improvements were observed in HRQoL scores post-intervention compared to pre-intervention in both EQ-VAS scores (from 59.84 to 79.48) and utility scores (from 0.79 to 0.90). These results remained lower than the age-matched general population (EQ-VAS score = 83.28, utility score = 0.96). Depression was associated with lower HRQoL while controlling for stress, anxiety symptoms and sociodemographic characteristics. Conclusions: These results indicate that HRQoL is significantly impaired in people with depression and contribute to providing empirical evidence of Tele-SSM intervention in improving HRQoL. Further randomized controlled trials should be conducted to evaluate the effectiveness and cost-effectiveness of the Tele-SSM intervention. [ABSTRACT FROM AUTHOR]

Background: Stroke is a leading cause of mortality and negatively affects health-related quality of life (HRQoL). HRQoL after stroke is understudied in Africa and there are no reports of quality-adjusted life years after stroke (QALYs) in African countries. We determined the impact of stroke on HRQoL after stroke in Sierra Leone. We calculated QALYs at 1 year post-stroke and determined sociodemographic and clinical variables associated with HRQoL and QALYs in this population. Methods: A prospective stroke register was established at the two-principal adult tertiary government hospitals in Freetown, Sierra Leone. Participants were followed up at 7, 90 days, and 1 year post-stroke to capture all-cause mortality and EQ-5D-3L data. QALYs were calculated at the patient level using EQ-5D-3L utility values and survival data from the register, following the area under the curve method. Utilities were based on the UK and Zimbabwe (as a sensitivity analysis) EQ-5D value sets, as there is no Sierra Leonean or West African value set. Explanatory models were developed based on previous literature to assess variables associated with HRQoL and QALYs at 1 year after stroke. To address missing values, Multiple Imputation by Chained Equations (MICE), with linear and logistic regression models for continuous and binary variables, respectively, were used. Results: EQ-5D-3L data were available for 373/460 (81.1%), 360/367 (98.1%), and 299/308 (97.1%) participants at 7, 90 days, and 1 year after stroke. For stroke survivors, median EQ-5D-3L utility increased from 0.20 (95% CI: −0.16 to 0.59) at 7 days post-stroke to 0.76 (0.47 to 1.0) at 90 days and remained stable at 1 year 0.76 (0.49 to 1.0). Mean QALYs at 1 year after stroke were 0.28 (SD: 0.35) and closely associated with stroke severity. Older age, lower educational attainment, patients with subarachnoid hemorrhage and undetermined stroke types all had lower QALYs and lower HRQoL, while being the primary breadwinner was associated with higher HRQoL. Sensitivity analysis with the Zimbabwe value set did not significantly change regression results but did influence the absolute values with Zimbabwe utility values being higher, with fewer utility values less than 0. Conclusion: We generated QALYs after stroke for the first time in an African country. QALYs were significantly lower than studies from outside Africa, partially explained by the high mortality rate in our cohort. Further research is needed to develop appropriate value sets for West African countries and to examine QALYs lost due to stroke over longer time periods. Data availability: The Stroke in Sierra Leone anonymized dataset is available on request to researchers, see data access section. [ABSTRACT FROM AUTHOR]

Objective To explore the differences in the status of co-morbid combinations and health-related quality of life between urban and rural middle-aged and elderly people, and to provide a reference for improving the health of middle-aged and elderly people with co-morbid combinations of chronic diseases. Methods A total of 6 481 middle-aged and elderly people aged ≥50 years with at least two chronic diseases in China Healthy Aging and Reproductive Lifestyle Survey (CHARLS) 2020 were selected. The basic characteristics of urban and rural chronic disease co-morbid middle-aged and elderly people were described, the health-related quality of life was evaluated using the health utility value of EQ-5D-3L, and the combination of urban and rural chronic disease co-morbid combinations was analyzed using the association network diagram and Apriori association rule. Results The health utility value of the elderly in urban chronic disease co-morbidities was 0.8532±0.2400, which was higher than that of the elderly in rural chronic disease co-morbidities (0.8409±0.1952). The top five urban strong link chronic disease co-morbidity combination weights were: hypertension+dyslipidemia; hypertension+heart disease; hypertension+arthritis; gastric disease+arthritis; dyslipidemia+heart disease. In rural areas, there were: gastric disease+arthritis; hypertension+arthritis; hypertension+dyslipidemia; and hypertension+gastric disease. Chronic disease co-morbidities in rural middle-aged and elderly people produced 105 association rules and 86 association rules in urban. Among the top 10 association rules in terms of strength of association rules, there were 9 association rules for hypertension and 1 association rule for chronic lung disease in the rural posterior, while there were 6 association rules for hypertension, 3 association rules for dyslipidemia and 1 association rule for chronic lung disease in the urban posterior. Conclusion Health related quality of life of elderly people with chronic disease co-morbidities was higher in urban than in rural areas, with emphasis on pain management and depression and anxiety management in elderly people with chronic disease co-morbidities. There are differences in the combination of chronic disease co-morbidities in urban and rural areas, and the binary, ternary, and quaternary co-morbidity associations between common chronic disease illnesses are high, and hypertension and other chronic diseases and co-morbidities are the highest, and attention should be paid to preventive treatment of hypertension. [ABSTRACT FROM AUTHOR]

Background/Objectives: Cardiovascular diseases are one of the leading causes of morbidity and mortality worldwide. Health-related quality of life is crucial to assess the impact of cardiovascular diseases and to guide therapeutic strategies. The Short Form 36 Health Survey and the RAND 36-Item Health Survey questionnaires are common tools for measuring health-related quality of life in patients with cardiovascular disease, but their reliability may vary according to the population studied. The aim of this study is to compare the reliability of the SF-36 and the RAND-36 in a population with cardiac pathology, addressing the question of which of these instruments offers a more consistent and useful measurement in this specific group. Methods: A cross-sectional observational study was carried out at the University Hospital of Burgos (Spain). A total of 413 patients with cardiovascular pathology referred to the Cardiac Rehabilitation Unit were included. Patients with incomplete data or who did not participate in the program were excluded. Internal consistency (Cronbach's alpha), item–total correlation and reliability, and a half-and-half analysis were performed. Results: Both questionnaires showed similar and adequate reliability for patients with cardiovascular pathology. Internal consistency, as measured with Cronbach's alpha, was above 0.80 for most dimensions, supporting its robustness. Significant inter-item and inter-dimension correlations were found in both scales, except in some specific cases in the dimension 'Physical Functioning'. The half-and-half analysis confirmed the good reliability of both scales. Conclusions: Both the SF-36 and the RAND-36 are highly reliable tools for assessing health-related quality of life in patients with cardiovascular disease. The results may have significant implications for clinical practice, helping in the selection of health-related quality of life monitoring instruments and in the evaluation of the efficacy of therapeutic interventions. [ABSTRACT FROM AUTHOR]

Background: Eating disorders (ED) involve dysfunctional attitudes towards food intake, affecting physical and psychosocial well-being. These disorders significantly impact various domains of life and can lead to a decrease in health-related quality of life (HRQoL). Recent studies emphasize the importance of addressing HRQoL in ED treatment, particularly in the context of social isolation and loneliness, but this aspect is currently poorly evaluated. Methods: A sample of 220 people with an ED was enrolled for the study from different centers specialized in the treatment of ED and compared to 151 people from the general population. Different validated questionnaires were used to evaluate eating psychopathology, HRQoL, and loneliness. Partial correlation analyzes adjusted for marital status and regressions were used to evaluate the relationships between constructs and the differences between groups. Results: Higher feelings of loneliness were associated with a poorer HRQoL in patients and controls. In the ED group, both loneliness and eating psychopathology were significant predictors of HRQoL. Meanwhile, the duration of the disorder predicted HRQoL specifically in underweight patients, and BMI was a predictor of HRQoL in individuals with normal or above-normal weight. Conclusions: These findings highlight the importance of considering both HRQoL and loneliness in EDs, particularly among younger individuals. This approach aligns with the increasing focus on the role of interpersonal relationships in the recovery process. Additionally, the data confirm a link between weight and loneliness, suggesting that this connection, especially the differences between underweight patients and those of other weights, deserves further investigation. [ABSTRACT FROM AUTHOR]

Aim ASPEN is a randomized, open-label, Phase III study comparing zanubrutinib and ibrutinib in patients with Waldenström macroglobulinemia (WM). Materials & methods: Patient-reported outcomes were exploratory end points assessed using the EORTC QLQ-C30 and EQ-5D-5L VAS scores. Results: Overall, 201 patients (102 zanubrutinib; 99 ibrutinib) were enrolled. Clinically meaningful differences were observed in diarrhea and nausea/vomiting in both the intent-to-treat population and in patients attaining very good partial response (VGPR) in earlier cycles of treatment, as well as in long-term physical functioning and fatigue in patients achieving VGPR. Conclusion: Treatment with zanubrutinib was associated with greater improvements in health-related quality of life compared with ibrutinib in patients with WM and MYD88 mutations. Clinical Trial Registration:NCT03053440 (ClinicalTrials.gov) Plain Language Summary Patient quality of life is important What is this article about? This article talks about a study called the ASPEN trial, which compares two medicines used for treating a rare blood cancer that doctors call Waldenström macroglobulinemia. The medicines are called zanubrutinib (ZAN) and ibrutinib (IBR). They work in the same way, by blocking a protein called Bruton tyrosine kinase. When patients take medicines for an illness, it is important to learn about their physical, social, emotional and mental well-being (quality of life). In this study, we asked patients to fill out questionnaires about their well-being before starting the study treatment for their blood cancer, and again a few times while taking the medication, to see if there were any changes. What were the results of the study? There were two groups of patients. One group took ZAN and the other took IBR. The patients could not choose which medicine they were going to take. Results from both groups of patients were compared. Patients taking ZAN did not feel worse or better about their diarrhea and sickness, but those taking IBR said these symptoms had become worse. Both medicines improved how patients were feeling. However, improvement in tiredness and physical ability was larger in patients taking ZAN than those on IBR, especially for the patients whose cancer was getting better. What do the results mean? For patients with a rare blood cancer in this study, those taking ZAN had a better quality of life than those taking IBR. Tweetable Abstract In a head-to-head comparison in the Phase III ASPEN study, patients with Waldenström macroglobulinemia treated with zanubrutinib had better quality of life than patients treated with ibrutinib. Article highlights Waldenström macroglobulinemia (WM) is a rare B-cell lymphoma marked by an excess of monoclonal immunoglobulin-M. Patients with WM experience symptoms including fatigue, muscle weakness, neuropathy and anemia, significantly affecting their health-related quality of life (HRQoL). Bruton tyrosine kinase (BTK) inhibitors, particularly ibrutinib, have shown efficacy in treating WM; however, they are associated with adverse events that can lead to early treatment discontinuation, negatively affecting HRQoL. Zanubrutinib, a next-generation BTK inhibitor, was designed with improved selectivity for BTK to minimize off-target effects and toxicities and thereby potentially improve HRQoL. Materials & methods ASPEN is a randomized, open-label, Phase III study comparing zanubrutinib and ibrutinib in patients with relapsed/refractory or treatment-naive WM. In this study, HRQoL was measured with two validated patient-reported instruments: the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire – Core 30 and the EQ-5D-5L. Results Clinically meaningful improvements in diarrhea and nausea/vomiting symptoms were observed in patients receiving zanubrutinib compared with ibrutinib. Patients with a very good partial response to zanubrutinib had significantly increased HRQoL, particularly in physical functioning and fatigue symptoms. Both treatment arms had consistently improved EQ-5D-5L scores through Cycle 13. Discussion This is the first head-to-head study comparing HRQoL in patients with WM treated with different BTK inhibitors. The results reported here are consistent with the primary results of the ASPEN study reported by Tam et al. [10]. Conclusions In addition to the better efficacy observed with zanubrutinib vs. ibrutinib, zanubrutinib provides a higher quality of life to patients with WM. [ABSTRACT FROM AUTHOR]

ABSTRACT Background/Objectives Methods Results Conclusions Based on the premise that tongue and lip force is affected in individuals with orofacial myofunctional disorders (OMDs), orofacial myofunctional therapy (OMT) programs typically include the strengthening of orofacial muscles through isometric and isotonic exercises. The purpose of this study is to examine whether there is indeed a measurable difference in maximum tongue and lip strength and endurance between subjects with and without OMDs, as well as to explore Oral Health‐Related Quality of Life (OHRQoL) in this population.Sixty healthy young adults (mean age 18.9 years, SD 0.69 years, range 18.0–21.4 years) participated in this study. Perceptual evaluation of orofacial functions was conducted using the Orofacial Myofunctional Evaluation with Scores (OMES) protocol. Participants were divided into three groups, namely those with physiological orofacial functions (POF; n = 20), those with inconsistent orofacial functions (IOF; n = 11), and those with consistent OMDs (OMD; n = 29). Maximum isometric pressure and endurance of tongue and lips were measured using the Iowa Oral Performance Instrument (IOPI). OHRQoL was assessed using the Oral Health Impact Profile (OHIP‐14).The OMES total scores did not differ significantly between the three groups, though the subscale ‘function’ showed significant differences (13.637; p = 0.001). No statistically significant differences in maximum isometric pressure or endurance for tongue and lips, nor for OHIP scores, were measured between the three groups.Although orofacial muscle strengthening is commonly part of OMT, current findings suggest the superfluity of these types of exercises in the treatment of OMDs in healthy young adults and may indicate the need to focus on awareness and rehabilitation of pathological functions in these individuals. Re‐evaluation of the efficacy of OMT programs in different populations may be an important strategy going forward. [ABSTRACT FROM AUTHOR]

Background: We aimed to investigate the longitudinal impact of COVID-19 and the effects of clinical and psychosocial factors, accounting for post-COVID conditions (PCC), on the mental and physical aspect of health-related quality of life (HRQoL) of patients diagnosed with COVID-19. Methods: Data from the Nivel Corona Cohort were used, which includes individuals with an established SARS-CoV-2 infection that received four questionnaires over a year's time with questions regarding HRQoL (SF-12), symptoms and social characteristics. PCC was determined based on questionnaire data. Data on medical history and healthcare utilization were obtained from electronic health records from general practice. A repeated measures linear mixed model was used to explore associations between clinical and social characteristics, and the course of mental and physical HRQoL after a SARS-CoV-2 infection, taking PCC into account. Results: One hundred fifty-eight individuals of whom it was possible to determine whether they had PCC or not were included in this study. Seventy-six (48.1%) developed PCC, which was associated with a persistent reduction in both physical and mental HRQoL. Hospitalization during the acute phase of the infection had a negative impact on the physical HRQoL, which decreased over time. Females, people older than 53, and those with increased resilience and mental HRQoL before infection were more likely to report a more positive mental HRQoL over time. Conclusion: The negative association PCC has with both mental and physical HRQoL for at least six months, calls for more research to support patients with PCC. [ABSTRACT FROM AUTHOR]

Background: Cancer patients' health-related quality of life (HRQoL) has always been a hot discussion spot. Loneliness and psychological resilience are considered to be significant psychosocial factors impacting the HRQoL of the cancer population. However, there is a lack of studies on the interrelationship among loneliness, resilience, and HRQoL in patients with nasopharyngeal carcinoma (NPC). This study aims to explore the relationship between resilience and HRQoL among NPC patients and to recognize the potential mediating role of loneliness in this relationship. Methods: A cross-sectional study was performed in this study. A convenience sampling method was conducted to recruit participants. A total of 155 patients with nasopharyngeal carcinoma were required to complete the socio-demographic questionnaire, the Cancer Loneliness Scale (CLS), the 10-item Connor-Davidson Resilience Scale (CD-RISC-10), and the European Organization for Research and Treatment of Quality of Life Questionnaire C-30 (EORTC QLQ-C30) from April 2022 to August 2022 in a tertiary grade A hospital in Guangzhou, China. The multiple linear regression analysis was used to identify influencing factors, and structural equation modeling with the bootstrap method was performed to test the mediating role of loneliness. This study complied with the Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) guidelines. Results: HRQoL was at a median level among NPC patients, with a mean score of 64.19 (24.38) on the Global health status/quality of life (GHS/QoL) scale. Monthly household income (B = 4.973, P < 0.001), cancer stage (B=-4.342, P = 0.004), psychological resilience (B = 0.914, P < 0.001), and loneliness (B =-1.083, P < 0.001) were independent factors related to HRQoL, explaining 36.7% of the variance of HRQoL. Psychological resilience exerted its direct negative impact on loneliness (β = -0.199, BC95%CI = -0.318/-0.089), and it also had a both direct and indirect positive impact on HRQoL (β = 0.653, BC95%CI = 0.423/0.912; β = 0.142, BC95%CI = 0.046/0.296). Loneliness exerted a partially mediating impact on the relationship between psychological resilience and HRQoL. Conclusions: NPC patients with higher monthly household, early stages of cancer, higher resilience, and lower loneliness show a better HRQoL. Resilience has an indirect positive impact on HRQoL by influencing loneliness in NPC patients. It is suggested that healthcare staff should strive to enhancing resilience and reducing loneliness as new strategies to promote NPC patients' HRQoL further. [ABSTRACT FROM AUTHOR]

Objectives Methods Results Conclusions To determine how the treatment decision‐making process and posttreatment health‐related quality of life (HRQOL) are related to regret about treatment choice for prostate cancer patients in Japan.We invited a total of 614 patients who were treated with radiation therapy (RT), radical prostatectomy (RP), or active surveillance/watchful waiting (AS/WW) from April 2007 to March 2021. Posttreatment regret was evaluated by the Decision Regret Scale. HRQOL was evaluated by the Expanded Prostate Cancer Index Composite and the 12‐item Short Form Survey. The decision‐making process was assessed by patient evaluation of the decision‐making process. We compared the decision regret scale scores across treatment types, HRQOL, and decision‐making processes.Data from 371 patients were analyzed (RT: 202, RP: 149, AS/WW: 20). The median length of time since treatment was 64 (IQR: 43–93) months. The decision regret scale scores were not significantly different among the treatment groups but were significantly greater (strong regret) in patients with poor urinary summary scores, bowel summary scores, and hormonal summary scores. The decision regret scale scores were significantly lower (less regret) for patients who reported being adequately informed at the time of the treatment decision and who had adequately communicated their questions and concerns to physicians than for patients who reported less adequate communication. This result was also observed among patients who reported low HRQOL scores.These findings underline the important influence of posttreatment HRQOL and decision‐making as an interactive process between physicians and their patients on posttreatment regret in prostate cancer patients. [ABSTRACT FROM AUTHOR]

Objective Methods Results Significance To estimate the minimum clinically important difference (MCID) for the parent‐reported 55‐item Quality of Life in Childhood Epilepsy Questionnaire (QOLCE‐55) and its shortened 16‐item version, QOLCE‐16.Data came from 74 children with epilepsy (CWE) (ages 4–10, mean age = 8 [SD = 1.8]) enrolled in the Making Mindfulness Matter in Epilepsy (M3‐E) trial, a pilot, parallel randomized‐controlled trial of a mindfulness‐based intervention. Both anchor‐based and distribution‐based methods were used to estimate MCID values for the QOLCE‐55 and QOLCE‐16. For the anchor‐based approach, the Patient Centered Global Ratings of Change (PCGRC) scale and linear regression analysis were used to estimate the MCID. For the distribution‐based approach, .5 SD of the health‐related quality of life (HRQOL) change score distribution was used to estimate the MCID.For the QOLCE‐55, the MCID obtained using an anchor‐based approach was 10 points and using a distribution‐based method was 6 points. For the QOLCE‐16, the MCID obtained using an anchor‐based method was 13 points and using a distribution‐based method was 7 points.This is the first study to estimate MCID values for the QOLCE‐55 and the QOLCE‐16. It has been well documented that CWE are at risk of experiencing psychological, behavioral, and cognitive impairments, which can negatively impact their HRQOL. Reporting MCID values for the QOLCE‐55 and QOLCE‐16 is important in determining whether changes in HRQOL observed are meaningful to CWE themselves, as a key factor in shaping the nature of epilepsy care delivered. [ABSTRACT FROM AUTHOR]

Objectives: This study aims to determine clusters of access to healthcare among adults with rare diseases in Switzerland, identify associated individual characteristics of access, and impact on health-related quality of life (HRQoL). Methods: Swiss adults (N = 341) diagnosed with a rare disease completed an online survey including the Perception of Access to Healthcare Questionnaire (PAHQ) and Short Form Health Survey (SF-12). We employed partition around medoids algorithm to identify patient clusters based on the PAHQ. Various sociodemographic/disease-related factors and HRQoL were assessed. Results: We identified two patient clusters: higher (n = 227) and lower access (n = 114). Significantly associated with lower access were an unstable disease course (p < 0.05), increased number of misdiagnoses (p < 0.05), and diseases affecting the nervous system (p < 0.01). Membership in the lower access cluster was significantly associated with worse HRQoL (p < 0.05). Conclusion: Findings highlight the need for comprehensive assessment of healthcare access in adults with rare diseases and identifies potential targets for tailored interventions. [ABSTRACT FROM AUTHOR]

Objective Methods Results Significance Health state utilities are required to obtain quality adjusted life years, a common metric that informs clinical decision‐making at individual, group, and health policy levels. Health state utilities are different from health‐related quality of life, and their distribution across patients with epilepsy, as well as the factors that impact them, have not been studied in depth. We aimed to describe the distribution of health state utilities in people with epilepsy and the impact of different combinations of clinical and demographic factors on health state evaluation.We performed a retrospective analysis of patients' data prospectively collected in the Calgary Comprehensive Epilepsy Program registry. Patient‐reported health state utilities were measured using the 5‐level EuroQol 5‐Dimension scale (EQ‐5D‐5L) completed at their initial assessment. EQ‐5D‐5L index scores were derived via the time trade‐off approach based on Canadian norms, and their distribution across different health states and patient characteristics was obtained. The Tobit regression model was used to evaluate the determinants of EQ‐5D‐5L index scores.Of 1446 patients included in this analysis, 724 (50.5%) were female. The median (interquartile range) Canada‐normed EQ‐5D‐5L index score was .87 (.71–.91). Patients with significantly lower health utilities were more likely to be female (p = .008), to be older (p = .034), to be unmarried (p = .013), to have failed to achieve 1‐year seizure freedom (p < .001), to have no postsecondary education (p = .028), to be depressed (p < .001), to have antiseizure medication side effects (p = .001), to be unemployed (p < .001), and to be unable to drive (p < .001). A look‐up table of health utilities based on combinations of clinical–demographic characteristics was produced.Health utility estimates for combinations of different health states in people with epilepsy attending specialty clinics are now available. These can help guide clinical decision‐making in routine clinical practice, economic evaluations of treatment interventions, and health care policies. [ABSTRACT FROM AUTHOR]

Background: An important methodological challenge in conducting pediatric economic evaluations is estimating the preference-based health-related quality of life (HRQoL) of children. Current methods are highly variable and there is no single instrument available to value HRQoL consistently across multiple pediatric age groups. The Pediatric Quality of Life Inventory (PedsQL) is a non-preference-based generic HRQoL instrument validated for children 2–18 years, but it cannot be directly used in economic evaluations. The aim of this study was to establish the core dimension structure of the PedsUtil health state classification system using confirmatory factor analysis, which is the first step of deriving a preference-based measure of HRQoL based on the PedsQL. Methods: Four competing dimension structures of the PedsUtil health state classification system were developed based on published literature and expert opinion. Using data from the Longitudinal Study of Australian Children (LSAC) (n = 45,207), the 4 dimension structures were evaluated using the robust weighted least squares estimation method. The analyses were stratified by 2-year age intervals (from 2 to 17 years) to reflect the study design of the LSAC, as well as special healthcare needs status of the child. Model fit was evaluated by examining standardized factor loadings and various fit indices including the comparative fit index (CFI), Tucker-Lewis Index (TLI), and the root mean square error of approximation (RMSEA). Modification indices and residual correlations were examined to re-specify the models to improve model fit when necessary. Results: The findings supported a 7-dimension structure (i.e., Physical Functioning, Pain, Fatigue, Emotional Functioning, Social Functioning, School Functioning, and School Absence) of the PedsUtil health state classification system. The 7-dimension model exhibited adequate fit across subgroups with CFI values that ranged from 0.929 to 0.954, TLI values from 0.916 to 0.946, and RMSEA values from 0.058 to 0.102. Conclusions: This study established the core dimension structure of the PedsUtil health state classification system using confirmatory factor analysis. The 7-dimension structure was found to be applicable across diverse pediatric populations. Research is currently ongoing to select the most representative item within each dimension of the PedsUtil health state classification system and valuation surveys will be fielded to estimate the PedsUtil scoring system. [ABSTRACT FROM AUTHOR]

Background: Loneliness is common among older adults in institutional settings. It leads to adverse effects on health and wellbeing, for which nature contact with peers in turn may have positive impact. However, the effects of nature engagement among older adults have not been studied in randomised controlled trials (RCT). The "Friends in Nature" (FIN) group intervention RCT for lonely older adults in Helsinki assisted living facilities (ALFs) aims to explore the effects of peer-related nature experiences on loneliness and health-related quality of life (HRQoL). In this study we aim describe the participants' baseline characteristics of the RCT, feasibility of FIN intervention and intervention participants' feedback on the FIN. Methods: Lonely participants were recruited from 22 ALFs in Helsinki area, Finland, and randomised into two groups: 1) nature-based social intervention once a week for nine weeks (n = 162) and 2) usual care (n = 157). Demographics, diagnoses and medication use were retrieved from medical records, and baseline cognition, functioning, HRQoL, loneliness and psychological wellbeing were assessed. Primary trial outcomes will be participants' loneliness (De Jong Giervald Loneliness Scale) and HRQoL (15D). Results: The mean age of participants was 83 years, 73% were female and mean Minimental State Examination of 21 points. The participants were living with multiple co-morbidities and/or disabilities. The intervention and control groups were comparable at baseline. The adherence with intervention was moderate, with a mean attendance of 6.8 out of the nine sessions. Of the participants, 14% refused, fell ill or were deceased, and therefore, participated three sessions or less. General subjective alleviation of loneliness was achieved in 57% of the intervention participants. Of the respondents, 96% would have recommended a respective group intervention to other older adults. Intervention participants appreciated their nature excursions and experiences. Conclusions: We have successfully randomised 319 lonely residents in assisted living facilities into a trial about the effects of nature experiences in a group-format. The feedback from participants was favourable. The trial will provide important information about possibilities of alleviating loneliness with peer-related nature-based experiences in frail residents. Trial registration: ClinicalTrials.gov, ID: NCT05507684. Registration 19/08/2022. [ABSTRACT FROM AUTHOR]

OBJECTIVES: The main objective was to explore the effect of exoskeleton-assisted rehabilitation on quality of life in the subacute state of ischemic stroke. BACKGROUND: Central upper extremity hemiparesis affects self-care, social participation, and quality of life. Exoskeleton devices serve as a therapeutic tool and an assessment tool that offers precise tracking of patient progress and evaluation of impairment. METHODS: The trial was carried out from April 2022 to September 2023. Twenty-seven patients were randomly assigned to the intervention (14 participants; mean age 64.71 years; 5 women, 9 men) and control group (13 participants; mean age 64.69 years; 6 women, 7 men). Both groups received equal total therapy (10 to 12 sessions, 5 times a week). The intervention group received 30 minutes of Armea®Spring training combined with conventional rehabilitation. The control group was subjected to conventional rehabilitation. RESULTS: In the comparison between groups, the experimental group achieved significant changes in quality of life, movement efficiency, and functional performance of the upper extremities. CONCLUSIONS: Armeo®Spring therapy combined with usual care led to significantly larger changes in healthrelated quality of life and upper extremity movement efficiency compared to conventional rehabilitation [ABSTRACT FROM AUTHOR]

(1) Background: Clinical aspects like sex, age, Karnofsky Performance Scale (KPS) and psychosocial distress can affect the health-related quality of life (HR-QoL) and treatment satisfaction of patients with malignant isocitrate dehydrogenase wild-type (IDHwt) gliomas and caregivers. (2) Methods: We prospectively investigated the HR-QoL and patient/caregiver treatment satisfaction in a cross-sectional study with univariable and multiple regression analyses. Questionnaires were applied to investigate the HR-QoL (EORTC QLQ-C30, QLQ-BN20) and treatment satisfaction (EORTC PATSAT-C33). (3) Results: A cohort of 61 patients was investigated. A higher KPS was significantly associated with a better HR-QoL regarding the functional scales of the EORTC QLQ-C30 (p < 0.004) and a lower symptom burden regarding the EORTC QLQ-BN20 (p < 0.001). The patient treatment satisfaction was significantly poorer in the patients older than 60 years in the domain of family involvement (p = 0.010). None of the investigated aspects showed a significant impact on the treatment satisfaction of caregivers. (4) Conclusions: We demonstrated that in patients with IDHwt gliomas, the KPS was the most important predictor for a better HR-QoL in functional domains. Data on the HR-QoL and treatment satisfaction in patients with IDHwt gliomas and their caregivers are rare; therefore, further efforts should be made to improve supportive care in this highly distressed cohort. [ABSTRACT FROM AUTHOR]

Background and Purpose: A patient's defective mitral valve is replaced as part of a treatment called mitral valve replacement (MVR) with a mechanical or biological (bioprosthetic) valve. To evaluate the effects of preoperative respiratory muscle training (RMT) on the improvement of postoperative Health related quality of life in MVR patients. Methods: A quasi‐experimental study was conducted at Faisalabad Institute of Cardiology. A Sample of 40 adult patients aged 25–50 years of both genders who underwent MVR was selected and divided into two groups Group 1 (Respiratory Muscle Training Group) was received RMT consisting of 10–15 repetitions a day for 5 days; for 3 weeks. Whereas Group 2 (Conventional Group) was receive breathing exercise consisting of 10–12 repetitions a day for 5 days; for 3 weeks. Modified Healthy Heart Questionnaire (HHQ‐GP‐1) was used as screening tool. In outcome measuring tools Health Related Quality of life Questionnaire (EuroQol), New York Heart Association, was used at baseline, 3rd week and postoperatively. Duration of Postoperative Mechanical Ventilation (hours) and Hospital Stay was also noted as outcome measures of this study. Results: Results obtained indicate that level of Self‐Care in EuroQol‐5‐D‐5L has improved in group 1 3.35 ± 1.03 to 1.35 ± 0.48 showing significant improvement similarly in case of Hospital Length of Stay, Mechanical ventilation 4.05 ± 0.68 to 5.05 ± 0.51 and Pain 65.25 ± 8.34 to 71.50 ± 6.70 has improved. Implications on Physiotherapy Practice: It was concluded that Respiratory Muscle Training and Conventional Muscle Training both are effective in MVR patients. But RMT is more effective in improving self‐care, reducing pain, Hospital Length of Stay and Mechanical Ventilation in postoperative period as compared to Conventional Muscle Treatment. [ABSTRACT FROM AUTHOR]

Objective: This study examines the association between psychosocial risk and protective factors and a wide range of psychosocial outcomes including emotional, social, cognitive, and physical domains in childhood cancer survivors (CCS). Methods: CCS from the Dutch Childhood Cancer Survivor Study (DCCSS)‐LATER cohort (diagnosed 1963–2001) part 2 (age ≥ 18 years, diagnosed < 18 years, ≥ 5 years since diagnosis) completed questionnaires on psychosocial risk and protective factors (Benefit and Burden Scale, Illness Cognition Questionnaire, Rosenberg Self‐Esteem Scale, and Impact of Cancer Scale), and psychosocial outcomes (Hospital Anxiety and Depression Scale, Self‐Rating Scale for Post‐Traumatic Stress Disorder, TNO‐AZL Questionnaire for Adult Health‐Related Quality of Life, and Short Form‐36). Associations were assessed with regression analysis, adjusting for attained age, sex, number of health conditions, and time since diagnosis, while correcting for multiple testing (p < 0.004). Results: A total of 1382 CCS participated, all diagnosed ≥ 15 years ago. The mean age of participating CCS was 36 years, and 51% were female. Perceived benefit and burden, acceptance, and helplessness, self‐esteem and social support were associated with the psychosocial outcomes. In the models including all psychosocial factors, most associations with psychosocial outcomes were seen for self‐esteem (10×), and perceived burden (9×). Self‐esteem (all β ≤ 0.47) and perceived burden (all β ≤ 0.38) demonstrated strongest associations of medium/large size. Conclusions: Perceptions of childhood cancer, illness cognitions, self‐esteem, and social support play a role in explaining psychosocial functioning in CCS, outweighing the influence of socio‐demographic and medical variables. Addressing negative perceptions and reducing feelings of helplessness, while promoting acceptance, self‐esteem, and social support, could provide intervention targets for CCS who encounter psychosocial challenges. [ABSTRACT FROM AUTHOR]

Assessment of sport-related concussion (SRC) has begun to include patient-reported outcome measures. However, understanding of which health limitations are most meaningful to adolescents after SRC is limited. To explore patient-perceived activity limitations after SRC and throughout recovery to return to play and mapped according to the International Classification of Functioning, Disability, and Health (ICF) model. Longitudinal study. Secondary school athletic training facilities. Fifty patients (41 males, 5 females, 4 sex not reported, age = 14.9 ± 3.5 years, grade = 10.2 ± 0.93 level) with a medically diagnosed SRC. The Patient Specific-Functional Scale (PSFS) was used to assess changes in the patient's condition and the effect the injury posed on their ability to perform activities. The PSFS is a self-reported assessment of health used to identify activity limitations and rate the difficulty of performing those tasks. The PSFS was administered to patients on days 3 (D3) and 10 (D10) after SRC and at return to play. Activities affected by injury were coded into common categories and themes by a 3-person research team for subsequent analysis. The coded themes were also mapped to the ICF domains, chapters, and categories. The dependent variables were the PSFS themes, number of activities endorsed, PSFS scores, ICF domains, chapters, and categories. Descriptive analyses and frequencies were reported for the dependent variables. A total of 157 different activities were identified at D3 and coded into 28 categories that fit into 6 themes: activities of daily living, cognitive and school (COG), sports and physical activity (SPA), screen time, sleep, and social. On D3, all patients (50/50) identified at least 1 activity limitation. Most related to SPA (37.6%) and COG (31.2%). Sixty percent of patients endorsed activity limitations at D10, primarily in COG (38.6%) and SPA (36.6%). All (100%) response categories were mapped to the ICF, with most (75%) fitting the activities and participation domain. Our primary findings suggest that SRC influences many facets of the lives of adolescent athletes. Specifically, adolescent athletes identified activity restrictions primarily related to physical activity and sports participation. [ABSTRACT FROM AUTHOR]