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Health-related quality of life (HRQOL) in family members of cancer victims: results from a longitudinal intervention study in Norway and Sweden

Department of Psychology, Norwegian University of Science and Technology (NTNU), Trondheim, Norway

Kristen Ringdal

Department of Sociology and Political Science, Norwegian University of Science and Technology (NTNU), Trondheim, Norway

Marit S Jordhøy

Unit of Applied Clinical Research, Norwegian University of Science and Technology (NTNU), Trondheim, Norway

Marianne Ahlner-Elmqvist

Magnus Jannert

Department of Oto-Rhino-Laryngology, Malmø University Hospital, Malmø, Sweden

Stein Kaasa

Unit of Applied Clinical Research, Norwegian University of Science and Technology (NTNU) and Palliative Medicine Unit, Department of Oncology and Radiotherapy, University Hospital of Trondheim, Trondheim, Norway

This study compared the health-related quality of life (HRQOL) of family members of patients who participated in a program of palliative care (intervention family members) with those in conventional care (control family members). The HRQOL was measured by the short-form (SF-36) health survey questionnaire, including eight subscales. The longitudinal intervention study includes two sites: Trondheim, Norway and Malmø, Sweden. Our first hypothesis was that the HRQOL of the family members would deteriorate over time in the terminal phase and reach a low point a few months after the death of the patients, and thereafter gradually increase. This hypothesis was fully supported by the trajectories for the five scales, role limitation due to physical problems, vitality, social functioning, role limitation due to emotional problems, and mental health; but only partially so for the remaining three scales, physical functioning, bodily pain, and general health perception. From a second hypothesis, we expected the trajectories of the HRQOL scale scores for the two groups to show an increasing difference over time in quality of life in favor of the intervention group. This was the case for two of the scales: role limitation due to emotional problems and mental health. Before we may reach a definitive conclusion on the effects of palliative care programs for the HRQOL of family members, we need further longitudinal intervention studies with large samples. Palliative Medicine 2004; 18:108-120

Key Words: cancer victims • family members • health-relatedquality of life (HRQOL) • longitudinal study • randomized • short form (SF-36) health survey questionnaire

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