Quality of Life Research最新文献

Purpose: Information on factors contributing to quality of life (QOL) informs meaningful patient-centred care. We evaluated factors influencing QOL in individuals with developmental and epileptic encephalopathy (DEE) and other severe neurodevelopmental encephalopathy conditions using hypothesis-free regression tree analysis.

Methods: A questionnaire was completed by 242 caregivers of individuals two years or older. QOL was measured using the Quality of Life Inventory-Disability (QI-Disability). Independent variables described health, functional abilities and daily activities. The R package rpart was used to build the regression trees to explore the most influential factors associated with QOL.

Results: Median age was 8.8y (interquartile range 4.6-14.9 y). Mean total QI-Disability score was 60.2 ± 14.1 out of a total possible score of 100. The subgroup with the lowest QOL scores comprised individuals with low (raw score < 4) cognition scores measured with the Developmental Profile-4 (n = 52, mean score 46.4) whereas higher QOL scores were achieved by individuals with higher cognition scores and capacity to engage actively when using a touchscreen (n = 123, mean score 67.5).

Conclusion: Regression tree analysis suggests that cognition and use of touchscreens were important factors for QOL. Findings suggest small neurodevelopmental and functional gains may meaningfully improve quality of life for individuals with severe neurodevelopmental encephalopathy.

Purpose: Many current care assessment frameworks prioritise clinical and organisational outcomes over patient perspectives. This study aimed to identify gaps in existing patient-centred assessment methods and to develop a multilevel framework aligning quality evaluation with patient-defined priorities across macro (policy), meso (organisational), and micro (individual) levels, and technological levels.

Methods: We used a primarily qualitative design, conducting a literature review of patient-centred integrated care assessment studies and integrating these findings with a longitudinal case study that examined how the patient's perspectives were documented across multiple health information systems, synthesising evidence on existing practices with insights into how patient perspectives are integrated and represented for a comprehensive understanding.

Results: In total, 32 studies were included. The review revealed ongoing misalignment between systemic evaluation practices and patient-defined outcomes, particularly for individuals with complex physical and mental health needs. Minimal patient involvement in developing evaluation criteria reflected a disconnect between policy-level targets and individual patient well-being. This misalignment was echoed in the case study, which underscored that personal goals and non-clinical needs were often unrecorded, highlighting the gap between evaluation metrics and genuinely patient-centred care.

Conclusion: Integrated care quality assessment remains misaligned with patient-defined outcomes. We propose Patient-Reported Integrated Measures (PRIMs) as a conceptual contribution. PRIMs complement existing Patient-Reported Outcome Measures (PROM) and Patient-Reported Experience Measures (PREM) by capturing multidimensional outcomes that matter to patients and ensuring evaluation aligns with their goals. Integrating PRIMs into health information systems and research agendas can realign care evaluation with evolving patient priorities, thereby reducing the risk of leaving patients behind in future healthcare reforms.

Purpose: Ring 14 Syndrome is a rare genetic disorder caused by an anomaly in the 14th chromosome that often leads to intractable epilepsy, moderate to severe intellectual disabilities, slow growth, ocular abnormalities, and more. The presentation and severity of symptoms can greatly vary, making Ring 14 syndrome a complex condition to understand, manage, and treat. Conceptual disease models, also known as disease concept models, provide a formal framework based on the lived experience of patients and families that helps to describe the functional and quality of life impacts of a disease across various domains using qualitative methods.

Methods: To inform the development of a conceptual disease model on Ring 14 Syndrome, 17 caregivers representing 12 patients with Ring 14 Syndrome participated in semi-structured interviews over the course of four months. Data were analyzed using a mix of deductive and inductive inquiry through NVivo Software. Concepts were grouped into domains of patient symptoms and caregiver symptoms, with patient symptoms consisting of two sub-domains: functional impacts (which included cognitive impacts, physical impacts, behavioral impacts, and social-emotional-expressive impacts) and quality of life impacts (which included ADLs, medication side effects, and school/social/community). Caregiver impacts were categorized by mental health, family and social aspects, and medical care.

Results: Patient impacts listed under the cognitive and physical categories align closely with patient impacts referenced in the medical literature. However, impacts listed under the patient quality of life domain as well as the caregiver domain are inadequately represented in the literature, suggesting that the patient perspective has previously been neglected in the medical literature on Ring 14 Syndrome. Further, the numerous mental and physical health impacts on caregivers, grouped with the negative quality of life impacts on Ring 14 patients themselves, warrants further attention, as both have profound effects on health-related quality of life. Finally, while many of the impacts listed in the conceptual disease model may be considered negative aspects of the disorder, there were also positive impacts identified (such as happy demeanor, resilience, and social support) by the community as well.

Introduction: Due to the ongoing global refugee crisis, around 400 million children are currently displaced. We investigate domains of quality of life (QoL) in two groups of displaced children; children living with their caregivers in Closed Control Access Centre (CCAC) Mavrovouni and unaccompanied minors (UAMs) in designated shelters on Lesvos, Greece.

Methods: A mixed-methods study using PROMIS^® to quantitatively assess domains of QoL compared to a reference group by using a one-sample Wilcoxon sign-rank test. Associated variables were identified by multivariable linear regression analyses. Open questions were added to UAMs to qualitatively identify elements influencing QoL.

Results: A total of 111 children (N = 94) and UAMs (N = 17) participated. Children across all age groups showed significantly worse scores in various domains compared to the reference group. The youngest group (1-4 years) report more Depressive symptoms but better peer relationships, while the 5-18 year groups reported higher levels of anger, anxiety, depressive symptoms, and pain behavior. Adolescents (8-18 years) reported higher scores on meaning and purpose. A longer duration in camp was associated with higher scores on anxiety and depressive symptoms. UAMs mention separation from family as negatively influencing their mental health. They mention future goals, hope and social support as central to their sense of meaning and purpose.

Conclusion: Displaced children report high levels of anger, anxiety, pain behavior, and depressive symptoms, a prolonged stay in the camps even worsens these outcomes. This underscores the need for tailored interventions to enhance the overall well-being of this vulnerable population.

Purpose: Recently developed minimal important change (MIC) estimation methods recover the mean individual MIC in a sample. These methods are the adjusted predictive modeling (APM) method and the longitudinal confirmatory factor analysis (LCFA) method. Both methods require LCFA of patient-reported outcome measure (PROM) data. In the APM-method, LCFA is used to estimate the reliability of the transition ratings, whereas in the LCFA-method, LCFA is used to estimate the latent MIC. However, LCFA cannot be performed if the PROM is a single item measure (SIM). Adding an auxiliary variable, that is correlated with the PROM, to the LCFA-model may be a solution. We developed three different LCFA-models in which an auxiliary variable is included. In this simulation study, we assessed the performance of the APM- and LCFA-methods to recover the true MIC of an SIM. We applied both methods to a real dataset in which the SIM was a numeric rating scale for pain.

Methods: We simulated 15,552 samples, varying in 11 parameters, and estimated the APM-based and LCFA-based MICs.

Results: The APM-method performed well, except if the proportion improved was high or low, and the present state bias (PSB) was high. The LCFA-method performed well, irrespective of the proportion improved and the PSB. In the real data, the LCFA-based MIC was 17 (on a 100-point scale), whereas the estimated APM-based MIC was 4 points higher, probably due to a high proportion improved and a high PSB.

Conclusion: The MIC of an SIM can be accurately estimated using an auxiliary PROM.

Purpose: Individuals with bipolar disorder often experience reduced quality of life (QoL). Transcranial direct current stimulation (tDCS) is a promising non-invasive treatment for bipolar depression that is portable, safe, and suitable for use at home. We developed a home-based tDCS protocol with real-time remote supervision and examined its effect on QoL in bipolar depression.

Methods: In an open-label design, 44 participants (31 women) with bipolar depression of at least a moderate severity received 21 sessions of home-based tDCS (2 mA, 30 min, F3 anode/F4 cathode) over 6 weeks, with a follow-up visit conducted 5 months from baseline. QoL was assessed using the quality of life enjoyment and satisfaction questionnaire (Q-LES-Q) at baseline, week 2, end of treatment, and follow-up session. Baseline and post treatment scores were compared with healthy control participants (28 adults; 17 women).

Results: At baseline and at the end of treatment, bipolar participants showed a significantly lower Q-LES-Q score than healthy controls (p < 0.001). Within the bipolar group, there was a significant improvement in total Q-LES-Q scores (p < 0.001) and across multiple domains by week 6 and remained elevated at follow-up. Changes in Q-LES-Q were no longer significant after adjustment for depressive symptoms.

Conclusion: A 6-week course of supervised home-based tDCS was associated with significant QoL improvements in bipolar depression, which appeared to be closely linked to reduction in depressive symptoms. Randomized, sham-controlled trials are warranted to clarify the specific contribution of tDCS to improve QoL in bipolar depression.

Purpose: Health-related quality of life (HRQoL) is a key outcome in chronic kidney disease (CKD), yet data from low- and lower-middle income countries (LLMICs) are underrepresented. The study systematically reviewed and meta-analyzed HRQoL among CKD patients in LLMICs by disease stage and treatment modality.

Methods: Registered in PROSPERO (CRD420251016382), the review searched PubMed, Ovid MEDLINE, Scopus, and Web of Science (January 1, 2000 - March 28, 2025) for studies including adults with CKD stages 1-5, on dialysis, or post-transplant, using validated HRQoL instruments. Two reviewers independently screened studies, extracted data, and assessed quality using Joanna Briggs Institute tools. Pooled mean scores were estimated using random-effects meta-analysis, with meta-regression and Egger's test exploring heterogeneity and small-study effects.

Results: A total of 123 studies (n = 24,007) from 22 countries were included. Pooled SF-36 scores were 42.8 (95% CI 39.4-46.3) for Physical Component Summary (PCS) and 47.7 (43.8-51.6) for Mental Component Summary (MCS) in early CKD, versus 36.9 (34.0-39.9) and 42.5 (38.9-46.1), respectively, in late CKD. Transplant recipients showed higher HRQoL than dialysis patients across WHOQOL-BREF domains. The EQ-5D index declined from 0.706 (0.589-0.823) in CKD 1-3 to 0.486 (0.357-0.614) in dialysis.

Conclusion: CKD patients in LLMICs experience substantial deterioration in quality of life, particularly at advanced stages. Compared to high-income settings, HRQoL scores in LLMICs remain markedly lower, revealing major global inequities. This first region-specific synthesis provides benchmarks for HRQoL across CKD stages and underscores the need for earlier intervention and broader access to transplantation.

Purpose: Palliative care is delivered across most healthcare settings, yet service capability remains poorly defined, limiting quality improvement. A clearer definition is essential to drive system-wide improvement. This scoping review was undertaken to answer two important questions: What are the key constructs that define palliative care service capability, and how can they inform quality improvement and benchmarking?

Methods: A scoping review, retrieving studies from Medline, PsycINFO, and CINAHL. This scoping review was conducted in accordance with the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for scoping reviews (PRISMA-ScR). Relevant literature published in English from the year 2000 onwards, focusing on palliative care service delivery, standards, quality, and outcomes were included. Data were organised using an evidence map to define service capability and develop a conceptual framework.

Results: Palliative care service capability is defined as the ability of a service to deliver care, shaped by the broader health system and organisation in which the service operates. Four core domains emerged as central to the concept and were mapped against existing standards, quality indicators and clinical frameworks: (1) assessment, planning, and care provision; (2) transitioning patients between services; (3) availability of care; and (4) collaboration and linkages across health services involved in delivering palliative care.

Conclusion: This review provides a definition and conceptual model for palliative care service capability to support quality assessment and facilitate meaningful benchmarking. Integrating this framework into national quality initiatives may help identify gaps in service and system delivery, standardise care processes, and enhance patient-centred outcomes.