BACKGROUND: Kidney transplantation is the treatment of choice for pediatric end-stage renal disease. Transplant recipients often have better neurocognitive, academic, and health-related outcomes. While there is some evidence that health-related quality of life (HRQOL) improves following kidney transplant, other studies have found adolescent transplant recipients report lower overall HRQOL than healthy peers. Current research has focused on individual-level factors affecting adjustment to organ transplant, warranting examination of HRQOL from a systems perspective. Family environment and social support contribute to a system of proximal relationships that are crucial in adolescents\' development, making them important factors to study in relation to HRQOL post-transplant.
METHODS: The current study utilized archival data of adolescent renal transplant patients who completed surveys about their family environment, social support, and HRQOL during routine transplant clinic visits.
RESULTS: Family cohesion, as well as social support from parents, classmates, and people in school, were positively correlated with HRQOL. Social support from people in school uniquely predicted variance in HRQOL, beyond the contribution of overall family environment after controlling for demographic factors. Relative to comparable adolescent samples, transplant recipients reported more optimal overall family environment, greater social support from teachers, and lower social support from close friends.
CONCLUSIONS: Psychosocial interventions for adolescent kidney transplant recipients may be enhanced by collaborating with school professionals and further bolstering strengths in the family environment. Kidney transplant recipients may benefit from long-term intervention, as decreased HRQOL appears to persist years post-transplant.

OBJECTIVE: There is a lack of monitoring changes in the population scores of the most recent version, EQ-5D-5L, in mainland China. This study aims to address this knowledge gap by assessing the EQ-5D-5L scores in mainland China using a nationally representative sample.
METHODS: Data were extracted from the 2021 Survey of Health Index of Chinese Families, which covered 31 provinces/autonomous regions/municipalities in mainland China. The survey employed a multi-stage quota sampling strategy encompassing 120 prefecture-level cities. Quotas were allocated to each prefecture-level city in accordance with the 2020 China Population Census. This approach resulted in a final sample of 11,030 eligible questionnaires. The utility index and EQ Visual Analogue Scale (VAS) scores were reported for the entire sample (age-gender-urban/rural weighted) and by the characteristics of the study participants.
RESULTS: The study participants had a weighted mean utility index of 0.939 (SD=0.135) and EQ VAS score of 80.19 (SD=18.39). The most commonly reported problem was anxiety/depression (26.37%), while self-care was the least reported problem (6.18%). Those who were male, younger, lived without chronic conditions and disabilities, had higher levels of education, earned higher monthly household income, and were covered by basic medical insurance for urban employees had higher scores in both the utility index and EQ VAS.
CONCLUSIONS: This study revealed slightly lower utility index scores despite a much higher drop in EQ VAS scores while China maintained minimum cases of COVID-19 in 2021 compared to the population norms recorded in 2019. Further studies are warranted to unveil the full impacts of COVID-19 outbreaks.

UNASSIGNED: Considering the high burden of disease in young children measurement of Health-Related Quality of Life is needed to evaluate the burden of morbidity. This study aims to report on the validity and reliability of the isiXhosa EuroQol Toddler and Infant Populations (EQ-TIPS) measure for South Africa.
UNASSIGNED: A sample of 181 caregivers of children 0-36 months were recruited from a hospital in-patient (inpt) and outpatient (outpt) facility and crèches. The EQ-TIPS, Ages and Stages Questionnaire (ASQ), Faces, Leg, Activity, Cry, Consolability (FLACC) and dietary information were administered at baseline. EQ-TIPS was administered one week later in crèche children for test-retest reliability.
UNASSIGNED: Known groups showed significant differences for pain (X2=37.21, p<0.001), and EQ-TIPS level sum score (KWH=25.9, p<0.001) between health groups. The Visual Analogue Scale was unable to discriminate general health between groups (KW-H=3.92, p=0.141). Concurrent validity was weak to moderate and significant for all dimensions hypothesised to correlate. There was significant fair to moderate test-retest reliability for EQ-TIPS dimensions of movement, play, pain and eating.
UNASSIGNED: The isiXhosa EQ-TIPS is valid and reliable for very young children in South Africa and we suggest that it be included in the assessment of children with health conditions within this context.

Purpose: Despite improvements in survival, adolescent and young adult (AYA) oncology patients are at high risk for experiencing negative health-related quality of life (HRQOL) outcomes. AYA cancer programs have attempted to develop assessment tools to identify areas of need. We aimed to demonstrate the feasibility/utility of the Patient-Reported Outcome Measurement Information System®-29 (PROMIS®-29) within an AYA oncology program clinic. Methods: AYA patients were referred by oncologists to the AYA oncology program at Prisma Health. The PROMIS-29 v2.0 survey was administered to AYAs at point of care. Feasibility of distribution and completion rate of surveys were determined. PROMIS surveys were self-reported and subsequently scored using standardized methods. The domains assessed included physical function, anxiety, depression, fatigue, sleep disturbance, ability to participate in social roles/activities, pain interference, and pain intensity. Qualitative descriptions of AYA care delivery based on survey responses at the patient level and programmatic level are also presented. Results: Between May 2017 and 2019, 134 AYAs who were newly diagnosed or in treatment completed the survey. Distribution and completion rates for the PROMIS-29 were both 100%, and meaningful changes in program-level services were implemented as a result of PROMIS-29 score patterns. Within the entire cohort, T-scores for anxiety, fatigue, and physical function reached clinically relevant thresholds. Conclusion: PROMIS offers a feasible opportunity for AYA programs to measure clinically useful HRQOL outcomes in AYAs. The survey can be used to deliver real-time AYA care to recently diagnosed and in-treatment AYAs and make programmatic changes within AYA oncology programs.

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

OBJECTIVE: The primary aim was to assess whether a total hip arthroplasty (THA) was able to restore health-related quality of life (HRQoL) following an intracapsular hip fracture. The secondary aims were to assess changes in hip-specific function, fitness/frailty, mortality risk, complications and revision risk, and factors independently associated with these.
METHODS: This retrospective cohort study included all patients aged ≥ 50 years admitted with a hip fracture from the emergency department at a single centre during a 42-month period. Patient demographics, perioperative variables, complications, revision, and mortality were collected. Patient-reported outcome measures (PROMs) were assessed at final follow-up.
RESULTS: Among 250 identified patients, 189 (75.6%) were women with a mean age of 70.3 (range 50-94 years). Mean follow-up was 2.3 (SD 1.1) years. The implant and patient survival rates at 2 years were both 95.5% (95% confidence intervals (CI) +/- 2.7). Older age (hazard ratio [HR] 1.22, 95% CI 1.12-1.33, p < 0.001) and male sex (HR 3.33, 95% CI 1.15-10.0, p = 0.026) were independently associated with mortality. There were 19 (7.6%) postoperative complications that included 6 (2.4%) periprosthetic fractures, 5 (2.0%) deep infections, and 8 (3.2%) dislocations, of which 13 underwent revision. Increasing time to theatre (HR 1.02, 95% CI 1.01-1.03, p = 0.017) was independently associated with a postoperative complication. Postoperative PROMs were available for 166 (66.4%) patients. There were significant (p < 0.001) deteriorations in EuroQol-5D (Mean difference [MD] 0.192, 95% CI 0.133-0.252), Oxford hip score (MD 2.5, 95% CI 1.5-3.6), and fitness (Rockwood score MD 0.7, 95% CI 0.5-0.8) relative to preoperative levels of function.
CONCLUSIONS: THA may be the treatment of choice in a physically active patient with the aim of restoring their HRQoL, hip function, and fitness, but this was not observed. Furthermore, there was a high complication rate which was associated with increasing time to theatre.
METHODS: III, retrospective cohort study.

The Setting International Standards in Analyzing Patient-Reported Outcomes and Quality of Life Endpoints Data (SISAQOL) initiative was established in 2016 to assess the quality and standardization of patient-reported outcomes (PRO) data analysis in randomized controlled trials (RCTs) on advanced breast cancer. The initiative identified deficiencies in PRO data reporting, including nonstandardized methods for handling missing data. This study evaluated the reporting of health-related quality of life (HRQOL) in Japanese cancer RCTs to provide insights into the state of PRO reporting in Japan. The study reviewed PubMed articles published from 2010 to 2018. Eligible studies included Japanese cancer RCTs with ≥50 adult patients (≥50% were Japanese) with solid tumors receiving anticancer treatments. The evaluation criteria included clarity of the HRQOL hypotheses, multiplicity testing, primary analysis methods, and reporting of clinically meaningful differences. Twenty-seven HRQOL trials were identified. Only 15% provided a clear HRQOL hypothesis, and 63% examined multiple HRQOL domains without adjusting for multiplicity. Model-based methods were the most common statistical methods for the primary HRQOL analysis. Only 22% of the trials explicitly reported clinically meaningful differences in HRQOL. Baseline assessments were reported in most trials, but only 26% reported comparisons between the treatment groups. HRQOL analysis was based on the intention-to-treat population in 19% of the trials, and 74% reported compliance at follow-up; however, 41% did not specify how missing values were handled. Although the rates of reporting clinical hypotheses and clinically meaningful differences were relatively low, the current state of HRQOL evaluation in the Japanese cancer RCT appears comparable to that of previous studies.

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

OBJECTIVE: This study aims to investigate the joint effects of cancer and sleep disorders on the health-related quality of life (HRQoL), healthcare resource utilization, and expenditures among US adults.
METHODS: Utilizing the 2018-2019 Medical Expenditure Panel Survey (MEPS) database, a sample of 25,274 participants was categorized into four groups based on cancer and sleep disorder status. HRQoL was assessed using the VR-12 questionnaire. Generalized linear model (GLM) with a log-linear regression model combined gamma distribution was applied for the analysis of healthcare expenditure data.
RESULTS: Individuals with both cancer and sleep disorders (C+/S+) exhibited notably lower physical health (PCS) and mental health (MCS) scores-1.45 and 1.87 points lower, respectively. They also showed significantly increased clinic visits (2.12 times), outpatient visits (3.59 times), emergency visits (1.69 times), and total medical expenditures (2.08 times) compared to those without cancer or sleep disorders (C-/S-). In contrast, individuals with sleep disorders alone (C-/S+) had the highest number of prescription drug usage (2.26 times) and home health care days (1.76 times) compared to the reference group (C-/S-).
CONCLUSIONS: Regardless of cancer presence, individuals with sleep disorders consistently reported compromised HRQoL. Furthermore, those with cancer and sleep disorders experienced heightened healthcare resource utilization, underscoring the considerable impact of sleep disorders on overall quality of life.
CONCLUSIONS: The findings of this study address the importance of sleep disorders among cancer patients and their potential implications for cancer care. Healthcare professionals should prioritize screening, education, and tailored interventions to support sleep health in this population.

A recent evidence gaps assessment of the clinical, health-related quality of life, and economic burden associated with α-thalassemia is lacking. We conducted a systematic literature review (SLR) following the methodological and reporting requirements of the Preferred Reporting Items for Systematic Reviews and Meta-Analyses and the Cochrane Handbook for Systematic Reviews, using available literature over the past decade. This SLR identified a considerable evidence gap with regard to understanding the current burden of α-thalassemia as evident from paucity of studies published in the past 10 years. The limited data available still indicate that patients with α-thalassemia experience substantial morbidity and quality of life/economic burden that is generally comparable to patients with β-thalassemia.