Prasetiyo Nugraha A, Wahyudin Elly, Setiawan Iman, Sanusi Mayamariska, Purba Fredrick D, Alkaff Sylmina D, Arifin Bustanul
Department of Pharmacy, Faculty of Pharmacy, Universitas Hasanuddin, Makassar, Indonesia.
Department of Statistics, Faculty of Mathematics and Natural Sciences, Universitas Tadulako, Palu, Indonesia.
Narra J. 2025 Aug;5(2):e1314. doi: 10.52225/narra.v5i2.1314. Epub 2025 Apr 28.
Schizophrenia is a prevalent mental health disorder often marked by relapses, significantly affecting the health-related quality of life (HRQoL) of both patients and their families. The aim of this study was to compare the EuroQol 5-Dimension 5-level (EQ-5D- 5L) responses of schizophrenia patients and their caregivers. Using an observational cross-sectional design, HRQoL was assessed among schizophrenia patients and their family caregivers recruited from a provincial referral hospital. Sociodemographic (age, sex, education, marital status, income) and clinical variables (diagnosis, treatment duration, comorbidities) were analyzed alongside HRQoL using structured interviews, medical record reviews, and the EQ-5D-5L instrument (self-report by patients and proxy- reported by family caregivers). Statistical analyses included chi-square tests for associations, Wilcoxon tests for patient-family caregiver comparisons, and multivariate modeling of HRQoL determinants. A total of 526 participants (263 patients and 263 accompanying family caregivers) were included. Significant differences were observed between patients and family caregivers in two domains: pain/discomfort and anxiety/depression. Also, the agreement between patients' and family caregivers' reports showed good results. A substantial agreement was observed between patient-reported and family caregiver-assessed HRQoL, as indicated by a Cohen's Kappa value of 0.8. This result suggests a strong level of consistency between the two assessments, supporting the potential use of family caregivers as reliable proxies for evaluating patient HRQoL when self-reports are unavailable or unreliable. In the self-care domain, mobility, and daily activities, patient and caregiver assessments show high agreement. In conclusion, the closeness between patients and caregivers significantly influences patients' HRQoL, providing critical insights for evaluating treatment effectiveness in schizophrenia cases. While discrepancies exist between patient and caregiver assessments, these interactions are particularly impactful in subjective domains like pain/discomfort and anxiety/depression, but not for other domains that are visible.
精神分裂症是一种常见的心理健康障碍，常伴有复发，严重影响患者及其家庭与健康相关的生活质量（HRQoL）。本研究的目的是比较精神分裂症患者及其照料者的欧洲五维健康量表（EQ-5D-5L）反应。采用观察性横断面设计，对从一家省级转诊医院招募的精神分裂症患者及其家庭照料者的HRQoL进行评估。使用结构化访谈、病历审查和EQ-5D-5L工具（患者自评和家庭照料者代理报告），对社会人口统计学（年龄、性别、教育程度、婚姻状况、收入）和临床变量（诊断、治疗时长、合并症）与HRQoL进行分析。统计分析包括用于关联性分析的卡方检验、用于患者与家庭照料者比较的威尔科克森检验，以及HRQoL决定因素的多变量建模。总共纳入了526名参与者（263名患者和263名陪同的家庭照料者）。在疼痛/不适和焦虑/抑郁这两个领域观察到患者与家庭照料者之间存在显著差异。此外，患者报告与家庭照料者报告之间的一致性显示出良好结果。患者报告的HRQoL与家庭照料者评估的HRQoL之间观察到高度一致性，科恩kappa值为0.8表明了这一点。这一结果表明两种评估之间具有高度一致性，支持在患者自评不可用或不可靠时，将家庭照料者作为评估患者HRQoL的可靠代理人的潜在用途。在自我护理、活动能力和日常活动领域，患者和照料者的评估显示出高度一致性。总之，患者与照料者之间的亲密程度对患者的HRQoL有显著影响，为评估精神分裂症病例的治疗效果提供了关键见解。虽然患者和照料者的评估存在差异，但这些相互作用在疼痛/不适和焦虑/抑郁等主观领域尤为重要，而在其他可见领域则不然。
