Quality of life in palliative care patients: A multi-centre study of profile, determinants and longitudinal changes from inpatient admission to death

Quality of life (QOL) at the end of life deserves detailed research. A multi-centred longitudinal study of QOL of palliative care patients was performed in Hong Kong. The McGill QOL questionnaire (MQOL) was selected as the assessment tool, and underwent translation/back-translation with cultural modification (MQOL-HK).;Secondly, detailed QOL profile of palliative care patients can be evaluated. The QOL of the 462 subjects were better than expected, illustrating that QOL of palliative care patients need not be bad. Physical and existential domains scored relatively poorly and required attention. Significant QOL determinants were also identified. Univariate analyses revealed association between age, gender, education, occupation, personal income, marital satisfaction, religion, support from friends, family and staff, and various QOL domains. Multivariate analyses confirmed that family support, age, personal incomes and staff support were the most important predictors.;Longitudinal follow-up yielded valuable information on QOL changes with disease progression. At one week after admission, the physical domain significantly improved, but existential domain and the single item overall score deteriorated. Analysis of longitudinal trend on admission, one week and at four weeks yielded a similar pattern. QOL in the two weeks pre-death demonstrated that the mean total QOL could be uphold at this very end stage. The worst physical symptom, physical well-being and meaning of existence however needed attention. For discharged patients, physical, psychological, sexuality/intimacy domains, and the mean total QOL significantly improved. Existential domain and single item overall scores could be maintained.;The studies contribute significantly to the understanding of palliative care patients' QOL, and are able to identify directions for future research.;The two research hypotheses were proven. Firstly, the notion of QOL can be understood by Chinese palliative care patients. Cross-cultural validation of the MQOL was confirmed in 462 advanced incurable cancer patients, with good construct validity, internal consistency, inter-rater and test-retest reliability. Principal components analysis shows that the physical, psychological, existential, and support domains are all pertinent. Multiple regression analysis proves that existential domain is the most important in predicting overall QOL. The three new items of "face", eating and sexuality/intimacy in the MQOL-HK are relevant. The MQOL-HK is valid, reliable and responsive.