Abstract

To develop and validate a quality of life (QOL) measurement scale in English and Chinese for the assessment of family caregivers of patients with advanced cancers in Singapore, a multi-ethnic society in Asia. Qualitative research solicited inputs from 18 family caregivers of patients with stage III or IV cancers. A questionnaire was derived from the findings, with English and Chinese versions. They were pilot tested with 12 family caregivers, 6 for each language version. Six hundred and twelve family caregivers participated in a baseline survey, of whom 304 (mostly ethnic Chinese, Malay and Indian) administered the English and 308 (mostly ethnic Chinese) administered the Chinese version. A follow-up survey was administered on average in 1-2 weeks from the baseline survey. The qualitative research revealed 29 themes, including themes that are not covered by existing measurement scales developed in western countries. A 54-item questionnaire was derived and tested. Factor analysis revealed 5 QOL domains. Comparative Fit Index (0.948) and other measures showed satisfactory goodness-of-fit, regardless of ethnicity or language version. The total score and domain scores showed known-group, convergent and divergent validity in relation to the Brief Assessment Scale for Caregiver and its sub-scales, patient’s performance status and other measures. Cronbach’s alpha of the scale and domains ranged from 0.86 to 0.93. Test-retest reliability ranged from 0.74 to 0.89. Separate analyses of the English and Chinese versions gave similar results. The 90% confidence intervals of differences in mean QOL scores between the two language versions were all within equivalence margin of +/-0.5 SD after controlling for demographic variables. A multi-domain QOL measurement scale in English and Chinese language for caregivers of patients with advanced cancers is developed from inputs of local participants. It is valid and reliable for assessment in a multi-ethnic Asian society.

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