Quality of Life Research最新文献

Background: Managing health-related quality of life (HRQoL) in patients with metastatic breast cancer (MBC) is crucial due to the physical, emotional, and social burdens of disease and its treatments. This study examined the HRQoL of patients with MBC and compared the patients' perspectives of two validated tools-the Functional Assessment of Cancer Therapy - Breast (FACT-B) and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire QLQ-C30 with its breast cancer-specific module QLQ-BR42 (EORTC) to determine which is most suitable for assessing HRQoL in patients with MBC.

Methods: A qualitative study design was used to explore patients' HRQoL and their perspectives on the two questionnaires, FACT-B versus EORTC, focusing on what matters most to the patients. Individual interviews were conducted between September and December 2024 at the Department of Oncology, Odense University Hospital, Denmark. Thematic analysis was selected to extract and analyze data.

Results: Fifteen women with MBC were included. Median age was 62 years (range 28-79), and the median duration of the interviews was 21 min (range 13-32 min). The analysis identified three main themes: (1) Living with metastatic disease, when incurable cancer is a life condition, (2) Design of the questionnaires, 3) Content of the questionnaires. Participants described impaired HRQoL, as they were hindered in living an everyday life, felt lonely at times, engaged in protective buffering, and lived in fear of the next scan. Overall, the participants found the design of the two questionnaires acceptable; neither was preferred over the other. However, regarding the content, the participants expressed a clear preference for FACT-B over the EORTC, primarily due to its greater relevance to their current situation, reflecting everyday life and need for support.

Conclusions: Participants in this study reported impaired HRQoL, marked by disrupted daily life, loneliness, protective buffering, and scanxiety. They preferred the FACT-B over the EORTC questionnaire for measuring HRQoL because of its focus on personal and emotional aspects, which reflected their lived experiences. However, further research is warranted to validate these findings in more diverse populations in the metastatic breast cancer context.

Background: Children with cardiac channelopathies face significant challenges, including exposure to medical trauma, complex genetic testing options, activity restrictions, lifelong surveillance, and increased risk of sudden death. This study assessed parental perceptions of child health-related quality of life (HRQOL) and unmet cardiac care needs, as well as predictors of traumatic stress among parents of children with a cardiac channelopathy.

Methods: Parents of children diagnosed with Long QT Syndrome, Catecholaminergic Polymorphic Ventricular Tachycardia, or Brugada Syndrome were invited to participate in a cross-sectional study. Sixty-eight parents from 45 families (response rate: 75%) completed measures assessing child HRQOL, unmet cardiac care needs, and parent symptoms of traumatic stress, anxiety, and depression.

Results: Prior to attending their first multidisciplinary arrhythmia clinic, parents reported an average of 12 unmet needs. Half of mothers (50%) and 38% of fathers indicated their child was at-risk in terms of emotional functioning. Having a cardiac implantable electronic device, lower social support, and greater parental psychological stress predicted lower child HRQOL. Child out-of-hospital cardiac arrest was the strongest predictor of parent post-traumatic stress.

Conclusions: Psychosocial screening and access to integrated, trauma-informed, family-centered psychological care should form part of best practice recommendations for children with cardiac channelopathies.

Purpose: While some studies report improved outcomes following exercise-based interventions, the overall findings regarding their impact on individuals with lower limb amputation (LLA) remain inconsistent. Therefore, there is a need to synthesize the available evidence. In this regard, this systematic review and meta-analysis aimed to clarify the effects of organized physical activity on quality of life (QoL) and phantom limb pain (PLP) in adults with LLA.

Methods: This review was conducted in accordance with PRISMA 2020 guidelines and registered in PROSPERO (CRD42024582703). Eight databases were searched in November 2024, including PubMed, Embase, Cochrane Library, Web of Science, PsycINFO, SPORTDiscus, ICI World of Papers, and ClinicalTrials.gov. Search terms combined concepts related to amputation, physical activity, quality of life, and phantom limb pain. Studies were included if they examined adults aged 18-60 with lower limb amputation and reported outcomes on quality of life or phantom limb pain following structured physical activity interventions. Only studies using validated outcome measures were considered.

Results: Six studies met the inclusion criteria for the systematic review. Three studies (reporting four independent effect sizes) were included in the meta-analysis of QoL outcomes. The pooled effect size was small and not statistically significant (SMD = -0.06, 95% CI: -0.29 to 0.16; p = 0.58), with no observed heterogeneity (I² = 0%). Narrative synthesis indicated that most studies found either non-significant or short-term improvements in QoL. Only one study reported a reduction in phantom limb pain (PLP; NPRS: 9 to 2), precluding a meta-analysis for this outcome due to insufficient data.

Conclusions: Current evidence does not provide statistically significant support for improvements in QoL following organized physical activity among adults with lower-limb amputation, while effects on PLP remain unclear due to limited and heterogeneous data. Further high-quality research using standardized, context-sensitive outcome measures and well-defined intervention protocols is needed. A more person-centered and contextually grounded understanding of QoL may help capture meaningful recovery outcomes in this population.

Objective: Urolithiasis has emerged as a substantial public health burden, characterized by recurrent pain and profound disruptions to health-related quality of life (HRQoL). While multiple patient-reported outcome measurements (PROMs) have been developed to assess HRQoL in this population, yet the methodological quality and psychometric properties of these condition-specific instruments remain unclear. This study aimed to systematically identify urolithiasis-specific PROMs for assessing HRQoL, evaluate and integrate the quality of the measurement properties.

Materials and methods: PubMed, Web of Science and relevant reference lists were systematically searched until January 2025. Studies developing or validating urolithiasis-specific HRQoL PROMs were included. The methodological qualities were assessed using the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) Risk of Bias checklist. The measurement properties were assessed against the criteria COSMIN recommended. The final overall rating was established through a synthesis based on modified GRADE approach.

Result: Thirty-three publications were deemed eligible. Six urolithiasis-specific PROMs for assessing HRQoL were identified, each of which has specific value in clinical practice and research. The most common finding was the limited evidence of comprehensiveness of content validity. Half of all measures lacked the necessary psychometric evidence on structural validity. The Urinary Stones and Intervention Quality of Life (USIQOL) received a Class A recommendation, the remaining five PROMs were assigned Class B recommendations.

Conclusion: This systematic review provides the basis for identifying urolithiasis-specific PROMs with potential utility. The USIQOL is currently the most rigorously validated PROM for comprehensive HRQoL assessment in urolithiasis. Other instruments are useful for targeted applications but require further validation. Further research is required to validate and complement the missing information on the psychometric properties of these instruments.