Quality of Life in Dementia Patients: Cross-Cultural Adaptation and Validation of Sinhala version of Dementia Specific Quality of Life (DEMQOL) in Sri Lanka.

Abstract

Dementia has become a public health priority along with population ageing worldwide. Owing to its chronic progressive nature in the absence of a cure, maintaining the best possible quality of life (QOL) have become the desired outcome for people with dementia. In the absence of valid tools to measure QOL, its current status is not known in the Sri Lankan setting. The current study aimed to perform a cross-cultural adaptation and validation of Sinhala version of DEMQOL and DEMQOL-proxy in Sri Lankan setting. DEMQOL and DEMQOL-proxy tools were initially translated, culturally adapted using modified Delphi process with a panel of experts, and tested for judgmental validity. Its construct validity was assessed by conducting a validation study among 100 patient-primary caregiver dyads attending state hospital psychiatry clinics in Gampaha District, by performing confirmatory factor analysis (CFA). Reliability was assessed using test-retest method and internal consistency. Mean age of patients with dementia was 72 years (SD=7.6) with a female preponderance (63.3%). Majority had studied up to ordinary level (68.3%). Dementia severity was assessed using mini mental state examination (MMSE) and only mild to moderate patients were included (mean MMSE score=17.32) in the study. Majority of the caregivers were female (73.3%) with a mean age of 55 years (SD=14) and 51% had studied up to advanced level. During CFA, the original four-factor model emerged with DEMQOL validation data, whereas a five-factor model was best fitted with DEMQOL-proxy validation data. Internal consistency and test re-test reliability of DEMQOL (Cronbach’s alpha=0.87; correlation coefficient=0.864) and DEMQOL-proxy (Cronbach’s alpha=0.874; correlation coefficient=0.834) were satisfactory. Sinhala version of the DEMQOL and DEMQOL-proxy scales are valid and reliable tools to assess the QOL of dementia patients of mild-moderate severity in Sri Lanka. Patients can successfully rate their own QOL.