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Assessing health-related quality of life in schizophrenia patients using EQ-5D-5L index: Insights from patients and caregivers A. Prasetiyo, Nugraha; Wahyudin, Elly; Setiawan, Iman; Sanusi, Mayamariska; Purba, Fredrick D.; Arifin, Bustanul; Alkaff, Sylmina D.
Narra J Vol. 5 No. 2 (2025): August 2025
Publisher : Narra Sains Indonesia

Show Abstract | Download Original | Original Source | Check in Google Scholar | DOI: 10.52225/narra.v5i2.1314

Abstract

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.
Stigma and health-related quality of life (HRQoL) among people with multidrug-resistant tuberculosis (MDR-TB): A cross-sectional study in Indonesia Arifin, Bustanul; Sarwadan, Muhamad G.; Wahyudin, Elly; Sarifah, Latifah M.; Fuady, Ahmad; Purba, Fredrick D.; Alkaff, Sylmina D.; Ardiansyah, Akhmad; Madolangan, Jamaluddin
Narra J Vol. 5 No. 2 (2025): August 2025
Publisher : Narra Sains Indonesia

Show Abstract | Download Original | Original Source | Check in Google Scholar | DOI: 10.52225/narra.v5i2.1317

Abstract

Stigma often accompanies people with multidrug-resistant tuberculosis (MDR-TB) and potentially affects their health-related quality of life (HRQoL). The aim of this study was to investigate the stigma faced by patients with MDR-TB, both from the patients' and community's perspective, and its relationship with HRQoL. Data was gathered at the provincial hospital in Makassar, South Sulawesi, Indonesia. The instrument employed in this research was the Indonesian version of the tuberculosis (TB) stigma instrument to assess MDR-TB stigma from the patient and community perspectives. The patient perspective represents how individuals with TB perceive and experience stigma, including the fear of disclosure, isolation, and guilt (feeling responsible for the burden on their family or their own risky behaviors). Meanwhile, the community perspective reflects how individuals with TB perceive societal attitudes towards them, such as social distancing, avoidance, and reluctance to interact. HRQoL was measured using the European quality of life-5 dimensions-5 level version (EQ-5D-5L) instrument. Notably, the evaluation of anxiety and depression is centered on the fifth dimension of the EQ-5D-5L instrument. A total of 210 patients with MDR-TB were included in the study, all of whom reported experiencing stigma. Most participants perceived stigma at a moderate level, with 76% from the patient perspective and 71% from the community perspective. The average EQ-5D-5L index score was 0.72 (95% confidence interval (95%CI): 0.68–0.76). Measurements from both perspectives show similar scores. There is a substantial negative association between the level of stigma and HRQoL, both from the patient's perspective (R2=-0.33; F=102.52; p<0.001) and the community's (R2=-0.32; F=96.76; p<0.001). The study highlights that the stigma of MDR-TB significantly affects the HRQoL from the patient and community perspective.