The number of people living with congenital heart disease (CHD) in 2017 was estimated to be 12 million, which was 19% higher than that in 1990. However, their death rate declined by 35%, emphasizing the importance of monitoring their quality of life due to its impact on several patient outcomes. The main objective of this study is to analyze how parents' psychosocial factors contribute to children's and adolescents' perceptions of their QoL, focusing on their medical condition. More specifically, we explore how parental psychological dimensions, such as anxiety and depression, are related to patients' health-related quality of life (HRQoL).

AADCd is a rare neurometabolic disorder presenting in infancy. Children with AADCd have motor dysfunction and development delays that result in the need for lifelong care; quality of life is greatly impacted. Current characterizations of health-related quality of life and associated health state utilities (HSUs) may be underestimated in AADCd. Accurate characterization of AADCd burden is important when evaluating the benefits of treatment, especially the improvements observed with the recently approved disease-modifying therapy eladocagene exuparvovec. Time-trade-off (TTO) vignette methods may be used to elicit HSUs in AADCd for assessing the value of new treatments. This study aimed to first update previously published health state vignettes, then estimate AADCd HSUs in the United States (US).

Esophageal cancer impairs basic functions such as eating and drinking frequently resulting in difficulty swallowing (dysphagia) and other problems such as weight loss, pain, fatigue, and taste alterations. There is still a research gap in understanding the impact of dysphagia on quality of life, as patients continue to bear significant physical and psychological burdens despite advances in treatment. This study attempted to address this gap by examining the lived experiences of dysphagia-related quality of life among esophageal cancer patients.

Idiopathic pulmonary fibrosis (IPF) is associated with high mortality, heavy economic burden, limited treatment options and poor prognosis, and seriously affects the health-related quality of life (HRQoL) and life expectancy of patients. This systematic review and meta-analysis of HRQoL and health state utility value (HSUV) in IPF patients and the instruments used in this assessment aimed to provide information sources and data support for the future research on IPF HRQoL and HSUV.

Validated patient-reported outcome measures (PROMs) are crucial for assessing patients' experiences in the healthcare system. Both clinically and theoretically, patient-centered consultations are essential in patient-care, and are often suggested as the optimal strategy in caring for patients with multimorbidity.

Given the recent update of SF-6Dv2, detailed data on utility scores for cancer patients by cancer type remain scarce in China and other regions, which limits the precision of cost-utility analyses (CUA) in cancer interventions. The aim of the study was to systematically evaluate utility scores of six common cancers in China measured using SF-6Dv2, and identify the potential factors associated with utility scores.

Laryngeal cancer often leads to total laryngectomy (TL), which results in the loss of natural voice, necessitates voice rehabilitation and affects the individuals Quality of Life (QoL). Despite advancements in treatment, Voice-Related QoL (VRQoL) post TL remains a neglected area in the field of rehabilitation. This study seeks to fill this gap by evaluating though a scoping review the impacts of TL on patients' voice-related QoL.

The relationship between social support and functional outcomes and health-related quality of life (HRQoL) after ischemic stroke (IS) remains unclear, especially in working-aged patients.

Rare diseases often entail significant challenges in clinical management and health-related quality of life (HRQoL) assessment. HRQoL assessment tools for rare diseases show substantial variability in outcomes, influenced by disease heterogeneity, intervention types, and scale characteristics. The variability in reported quality of life (QoL) improvements following interventions reflects a need to evaluate the effectiveness of HRQoL assessment tools and understand their suitability across diverse contexts.

Electronic patient-reported outcomes (ePROs) have been shown to enhance healthcare quality by improving patient symptom management or quality of life (QoL). However, ePROs data for urothelial cancer (UC) patients receiving systemic therapies are scarce, and the application of ePROs in this patient cohort may need specific setups. This study tested the feasibility of ePROs for UC patients receiving systemic therapies in the outpatient clinic of a tertiary care center.

Knowledge about the clinical importance of patient-reported outcome measures (PROMs) in severe asthma is limited.

Social isolation and loneliness are highly prevalent and may have a negative impact on health-related quality of life (HRQL). The EQ-5D-5L is a widely used questionnaire from which an index value for HRQL based on societal preferences (utility) can be derived. The purpose of this study was to estimate the loss in utility (i.e. disutility) associated with loneliness and social isolation in the German adult population.

This study evaluated the clinical utility of the Patient-Reported Outcomes Measurement Information System (PROMIS) by comparing it with objective clinical data and validated health-related quality of life (HRQOL) measures in pediatric Crohn's disease (CD) patients.

To assess fatigue in cancer patients, several patient-reported outcome measures (PROMs) are available that differ in content. To support the selection of suitable measures for specific applications and to evaluate possibilities of quantitative linking, the present study provides a content comparison of common fatigue measures, scales, and item banks. We included the EORTC CAT Core, EORTC QLQ-FA12, EORTC QLQ-C30, FACIT-F, PROMIS Fatigue (Cancer item bank v1.0), Brief Fatigue Inventory (BFI), Multidimensional Fatigue Inventory (MFI-20), Piper Fatigue Scale (PFS-12), and PRO-CTCAE.

Little is known about the quality of life (QoL) of caregivers of patients with chronic kidney disease (CKD) along the disease continuum. We investigated factors associated with low QoL among caregivers of patients with CKD including those on dialysis. We also examined the relationship between kidney disease severity and the QoL of caregivers.

The EQ-5D-Y-3L is widely used for measuring and valuing HRQoL in paediatric populations. This mixed methods study used the EQ-5D-Y-3L measure and applied a retrospective think-aloud approach to examine the self-report validity in children of varying chronological age.

Health-related quality of life (HRQL) is an important endpoint when evaluating the effectiveness of interventions in people living with hip and knee osteoarthritis (OA). The aim of this study was to generate domains for a new OA-specific preference-based index of HRQL in people living with hip or knee OA.

Performance status and health-related quality of life (HRQoL) are important parameters in the management of metastatic prostate cancer. The clinician-rated Eastern Cooperative Oncology Group performance status (ECOG-PS) may not relate with the patient-reported HRQoL because the later puts into consideration some aspects of health that are not captured by the former. The aim of this study is to define the relationship between clinician-rated ECOG-PS and the patient-reported HRQoL in men with metastatic hormone-naïve prostate cancer (mPCa).

This study aims to establish EQ-5D-Y-3L population norms in Jiangsu, China by conducting a large-scale cross-sectional survey.

Patient-reported outcome measures (PROMs) provide invaluable information on patients' health outcomes and can be used to improve patient-related outcomes at the individual, organizational and policy levels. This systematic review aimed to a) identify contemporary applications and synthesize all evidence on the use of PROMs in these contexts and b) to determine characteristics of interventions associated with increased effectiveness.

The use of EQ-5D instruments in clinical, policy and economic applications continues to grow internationally. Population norms studies provide baseline values against which demographic and patient groups are compared and inequality is assessed. This study presents updated EQ-5D-5L population norms for 2022-2023, evaluates inequality and compares the results with those of 2012.