Health and Quality of Life Outcomes最新文献

Objective: The quality of life(QoL) of patients with chronic diseases is a greater concern for both patients and clinicians. This study was aimed to develop and evaluate the second version of the General Module of Quality of Life Instruments for Chronic Diseases (QLICD-GM(V2.0)) by Classical Test Theory (CTT) and Item Response Theory (IRT) .

Methods: Building upon QLICD-GM(V1.0), the scale was developed and validated through a structured process combining qualitative and quantitative methods. The psychometric properties of QLICD-GM(V2.0) were assessed in a sample of 1953 patients with ten chronic diseases, evaluating reliability, validity, responsiveness, and item characteristics under CTT and IRT frameworks.

Results: The final QLICD-GM(V2.0) comprises 28 items across 3 domains and 9 facets. Item-domain correlations were highest for each item within its intended domain, except one. Confirmatory factor analysis indicated good model fit. Criterion validity against SF-36 showed correlations of 0.56 (physical), 0.54 (psychological), and 0.46 (social). Internal consistency was high (Cronbach's α: 0.79-0.98). Significant pre- to post-treatment score differences were found (all p < 0.001), with standardized response means of 0.24 (physical), 0.17 (psychological), and 0.07 (social). IRT analysis indicated all items had discrimination parameters between 1.11 and 1.41, with monotonically increasing location parameters. Average item information amount was approximately 0.33 (physical), 0.54 (psychological), and 0.44(social).

Conclusions: QLICD-GM(V2.0) provides a psychometrically sound, clinically interpretable and responsive measure of generic QoL in chronic patients. It can be used alone or combined with disease-specific modules to monitor benefit and guide treatment and rehabilitation planning.

Objectives: This systematic review investigates the barriers, enablers and mechanisms affecting ePROMs implementation in CKD (chronic kidney disease) management, with a focus on the perspectives of patients and healthcare providers.

Methods: A qualitative systematic review was conducted using the UK Medical Research Council's Process Evaluation Framework to analyze studies on ePROM implementation in CKD care. We systematically searched databases for peer-reviewed qualitative studies published from inception to October 2025. Thematic analysis, guided by the Process Evaluation Framework, was used to synthesize the findings. Studies from PubMed, Embase, Scopus, CINAHL, and APA PsycINFO were included.

Results: Results Eleven studies met the inclusion criteria. The synthesis identified distinct barriers and mechanisms of impact. Key barriers included structural and technical obstacles: digital literacy gaps, cognitive overload in vulnerable populations, misalignment with clinical IT systems, interface usability issues, and inconsistent implementation protocols. Regarding Enablers and Mechanisms, the review revealed a paradox. While ePROMs acted as enablers for personalized treatment and improved symptom awareness, their effectiveness was mediated by complex relational mechanisms. Both patients and clinicians expressed skepticism regarding utility in routine care. Furthermore, relational tensions arose when patient input was perceived as overlooked, highlighting that patient empowerment is conditional on the quality of the therapeutic alliance.

Conclusion: ePROMs have the potential to enhance CKD care by providing valuable insights into patient experiences. However, their adoption is hindered by digital literacy, technological issues, and inconsistent protocols. To optimize adoption, policymakers must prioritize IT integration and standardized protocols, while clinicians should actively incorporate results into consultations to validate patient input. Future research should focus on mixed-methods studies in diverse populations to ensure equitable and effective implementation.

Background: Dementia does not only impact the quality of life of the affected individual but also their family and informal caregivers, often referred to as health spillover effects. Increasing attention is being given to the inclusion of informal caregiver spillover effects in economic evaluations, given their potential to directly influence funding recommendations.

Objective: The objective of this study was to estimate the relative health spillover effects of dementia caregiving on informal caregivers using the EQ Health and Wellbeing 9-items (EQ-HWB-9) questionnaire.

Methods: A cross-sectional survey was conducted involving informal caregivers of people with dementia residing in Australia. Informal caregivers completed the experimental version of EQ-HWB to rate their own health and wellbeing and proxy reported for the person with dementia using the EQ-HWB-9. To estimate the relative spillover, univariate and multiple linear regressions modeled caregiver's EQ-HWB-9 scores (derived from the EQ-HWB) as a function of the person with dementia health and wellbeing (based on the EQ-HWB-9), adjusting for demographic and caregiving characteristics.

Results: In total, 202 informal caregivers completed the survey. The average age of caregivers was 60.4 (SD = 13.7), with 63.2% being female. The univariate analysis revealed a positive relative spillover effect coefficient of 0.23 (p < 0.001, R-squared = 0.10), demonstrating a significant positive association between caregiver's and person's with dementia health and wellbeing using the EQ-HWB-9. This relationship remained significant (p < 0.001, adj R-squared = 0.26) when adjusting for caregiver's chronic conditions in the multiple linear regression model yielding a spillover coefficient of 0.22. Most impacted domains of caregiving included exhaustion, loneliness and lack of control over day-to-day life.

Conclusions: There is evidence of associative relative health spillovers associated with providing informal care for a person with dementia. It is essential to include health effects on informal caregivers into economic evaluations to account for the burden of dementia posed beyond the affected individual.