Quality of Life Research最新文献

Purpose: Very little is known about the subjective well-being (SWB) of adults with a congenital corpus callosum disorder (CCD), the extent to which they feel satisfied with their lives, and what might be helpful in improving their SWB and quality of life. This study measured SWB among Australian adults with a CCD and compared the results with normative data for the wider Australian adult population.

Methods: Online surveys were completed independently by 53 Australian adults with a CCD. Data included demographic profiles and answers to questions about satisfaction with life, employing the Personal Wellbeing Index (PWI) and one open ended question. Domains measured included life as a whole, standard of living, health, achieving in life, personal relationships, safety, community connectedness and future security. The PWI results were statistically analysed and means compared with Australian normative data. The qualitative data were analysed using deductive thematic analysis.

Results: Australian adults with a CCD responded with ratings significantly below what might be expected of the adult Australian population in all domains except for standard of living and safety. Quantitative analysis results were supported by qualitative thematic analysis, expressing particular challenges and barriers to feeling satisfaction with life as a whole, personal relationships, achieving in life, health and future security.

Conclusion: Evidence from the PWI and accompanying qualitative responses indicate that SWB of Australian adults with CCD is significantly reduced compared with the general population. Further research is needed to examine the lived experience and explore solutions for support of this community.

Purpose: This study examined the relationship between multidimensional patient concerns and anxiety and depression in a national sample of older adults with cancer (OACs ≥ 65 years) and the buffering effect of visiting providers across disciplines (e.g., oncology, allied health, primary care, mental health) on these relationships.

Methods: Participants completed a cross-sectional survey through the Cancer Support Community's Cancer Experience Registry (CER), an online community-based research initiative. Eligible participants were 65 years and older and diagnosed with cancer in the past five years. Participants completed self-report measures of (1) the severity of their concerns across multiple domains, (2) anxiety and depression, and (3) whether they received care for "symptoms and side effects" from various providers.

Results: The sample consisted of 277 OACs; 45% endorsed elevated anxiety and 31% endorsed elevated depression. The most severe concerns were in the domains of body image and healthy lifestyle and symptom burden and impact. More severe concerns were associated with higher levels of anxiety and depression. The relationship between concern severity and distress was weaker in OACs who saw a palliative care, mental health, physical or occupational therapy provider, pharmacist, or primary care provider relative to OACs who did not. A visit with an oncology provider did not moderate most relationships between concerns and distress.

Conclusions: The relationship between OACs' concerns and distress was attenuated by treatment with a specialty provider. Interdisciplinary team care may be a vital component of comprehensive patient-centered care for OACs.

Background: This cross-sectional study aimed to explore health-related quality of life (HRQoL) in a large heterogeneous patient sample seeking outpatient treatment at a specialist mental health clinic.

Method: A sample of 1947 patients with common mental disorders, including depressive-, anxiety-, personality-, hyperkinetic- and trauma-related disorders, completed the EuroQoL 5-Dimension 5-Level (EQ-5D-5L) to assess HRQoL. We investigated clinical and sociodemographic factors associated with the EQ-5D index and the EQ Visual Analogue Scale (VAS) using regression analyses.

Results: The sample reported lower HRQoL compared with the general population and primary mental health care patients. Sick leave, disability pension, work assessment allowance, and more symptoms of anxiety and depression were associated with lower EQ-5D index and EQ VAS scores. Furthermore, being male, use of pain medication and having disorders related to trauma were associated with reduced EQ-5D index scores, while hyperkinetic disorders were associated with higher EQ-5D index scores.

Conclusion: HRQoL of psychiatric outpatients is clearly impaired. This study indicated a significant association between employment status, symptom severity, and HRQoL in treatment-seeking outpatients. The findings highlight the importance of assessing HRQoL as part of routine clinical assessment.

Purpose: The co-occurrence of health impairments in patients and their informal caregivers may be particularly common in intimate care settings in China. Patients with Chronic Refractory Wounds (CRWs) and their informal caregivers constitute a dyad and exhibit dyadic effects during the caring process. Unfortunately, no study has yet explored the dyadic effects of stigma on the QoL of patients with CRWs and their caregivers.

Methods: We used a convenience sampling method and recruited CRWs patient-caregiver dyads (N = 207) in China between April 2022 and October 2023.

Results: We found that: (i) dyadic members experience varying degrees of stigma; (ii) the actor-partner effect of CRWs patients' stigma on their own and their informal caregivers' QoL was significant (Path A₁: β = - 1.27, Path A₂: β = - 0.37, Path P₁: β = - 0.08, Path P₂: β = - 0.18); (iii) informal caregivers' stigma adversely affects both their own and their patients' psychological QoL((Path A₄: β = - 0.65, Path P₄: β = - 0.52)). Informal caregivers' stigma can negatively impact patients' physical QoL (Path P₃: β = - 0.17), whereas it does not significantly affect their own physical QoL.

Conclusion: There is a notable actor-partner effect of the CRWs patients' stigma on their own and their informal caregivers' QoL. CRWs patients' stigma should become a priority for the government to improve CRWs patients' and informal caregivers' QoL. Besides, health professionals should be addressing several assessments and interventions to decrease informal caregivers' affiliate stigma symptoms and improve CRWs patients' and informal caregivers' QoL.

Objective: This study was to investigate the differences between young older adults with and without vision impairment on neuropsychological and psychiatric outcomes following falls during the past year and to identify predictors of cognitive decline or mental distress.

Methods: A secondary analysis of 668 young older Chinese adults aged 65 ∼ 79 years old with a history of falls was conducted from the cross-sectional survey data in the 2018 wave of the Chinese Longitudinal Health Longevity Survey (CLHLS).

Results: Participants with vision impairment scored significantly higher on anxiety and depression and lower on cognitive function and SWB than those without vision impairment. And vision impairment was a significant predictor of adverse outcomes for all four neuropsychological and psychiatric measures.

Conclusion: Neurocognitive deficits, psychological problems, and decreased self-sufficiency are quite common among community-dwelling older adults with visual impairment who have a history of falls within a year.

Purpose: Systematic reviews of patient-reported outcome measures (PROMs) are important tools to select the most suitable PROM for a study or clinical application. Conducting these reviews is challenging, and the quality of these reviews needs to be improved. We updated the COSMIN guideline for systematic reviews of PROMs, including the COSMIN Risk of Bias checklist, and the COSMIN criteria for good measurement properties.

Methods: Adaptations to the methodology were based on our experience with applying the COSMIN guideline, through discussions among the authors, and results from two related Delphi studies.

Results: The updated guideline places more emphasis on key aspects that are often missing or sub optimally conducted in published systematic reviews of PROMs, such as formulating a well-defined research question and developing a comprehensive search strategy, assessing risk of bias, applying criteria for good measurement properties, summarizing results, and grading the quality of the evidence. We also stress the importance of evaluating the measurement properties of each subscale of a PROM separately and evaluating content validity of all included PROMs.

Conclusion: The quality of systematic reviews of PROMs can be improved by using this updated version of the COSMIN guideline for systematic reviews of PROMs. Improved quality will lead to better PROM selection and increased standardization of PROM use.

Purpose: Mapping or matching the items in a clinical outcome assessment (COA) to concepts that define a condition is a common method for evaluating a COA's concept coverage. The purpose of this research was to address the lack of formal guidance for conducting this task by developing a framework for best practices in COA concept mapping and applying it to a case study.

Methods: To develop the framework, we examined the literature and created a draft set of best practices which was then reviewed by experienced researchers through focus groups before being finalized. To conduct the case study, we extracted data from a systematic review of knee osteoarthritis (KO) symptoms and impacts and used the framework to map relevant concepts to items in the SF-36v2^® Health Survey (SF-36v2).

Results: The framework guides researchers in defining the purpose of and data sources for the mapping, establishing guiding principles and decision-making thresholds, and conducting the mapping exercise. The results of the case study demonstrate the usefulness of the framework in identifying 27/36 items (75%) in the SF-36v2 that addressed concepts that define KO.

Conclusion: This case study illustrates how the framework for best practices in COA concept mapping may be used, highlighting how establishing clear concept definitions and guiding principles and following a structured process throughout can help produce consistent, reliable, and reproducible results. The results from this rigorous approach can provide valuable evidence to support decisions about the appropriateness of a COA for the intended patient population.

Purpose: Sleep problems are frequently observed in cancer patients. Multiple questionnaires for assessing sleep quality have been developed. The aim of this study was to present transfer rules that allow the conversion of the patients' scores from one questionnaire to another. In addition, we anchored this common metric to the general population.

Methods: A sample of 1,733 cancer patients completed the following questionnaires: Pittsburgh Sleep Quality Index, Insomnia Sleep Index, Jenkins Sleep Scale, EORTC QLQ-C30, and the sleep scale of the EORTC QLQ-SURV100. The methods for establishing a common metric were based on Item Response Theory.

Results: The main result of the study is a figure that allows the conversion from one of the above-mentioned sleep scales into another. Furthermore, the scores of the questionnaires can be transferred to theta scores that indicate the position within the group of cancer patients and also to T scores that indicate the position in relation to the general population. The correlations between the sleep scales ranged between 0.70 and 0.85.

Conclusions: The conversion rules presented in the study enable researchers and clinicians to directly compare single scores or mean scores across studies using different sleep scales, to assess the degree of sleep problems with regard to the general population, and to relate cutoff scores from one questionnaire to another.

Purpose: The impact of pediatric traumatic brain injury (pTBI) on health-related quality of life (HRQoL) in children and adolescents remains understudied. Short scales have some advantages in terms of economy and administration over longer scales, especially in younger children. The aim of the present study is to psychometrically evaluate the six-item German version of the QOLIBRI-OS-KID/ADO scale for children and adolescents. In addition, reference values from a general German pediatric population are obtained to assist clinicians and researchers in the interpretation of HRQoL after pTBI.

Methods: A total of 297 individuals after TBI and 1997 from a general population sample completed the questionnaire. Reliability, validity, and comparability of the assessed construct were examined.

Results: The questionnaire showed satisfactory reliability (α = 0.75 and ω = 0.81 and α = 0.85 and ω = 0.86 for the TBI and general population samples, respectively). The QOLIBRI-OS-KID/ADO was highly correlated with its long version (R² = 67%) and showed an overlap with disease-specific HRQoL (R² = 55%) in the TBI sample. The one-dimensional factorial structure could be replicated and tested for measurement invariance between samples, indicating a comparable HRQoL construct assessment. Therefore, reference values and cut-offs indicating clinically relevant impairment could be provided using percentiles stratified by factors significantly associated with the total score in the regression analyses (i.e., age group and gender).

Conclusion: In combination with the cut-offs, the QOLIBRI-OS-KID/ADO provides a cost-effective screening tool, complemented by interpretation guidelines, which may help to draw clinical conclusions and indications such as further administration of a longer version of the instrument to gain more detailed insight into impaired HRQoL domains or omission of further steps in the absence of an indication.