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

Abstract

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.

Health-related quality of life in family members of patients with an advanced cancer diagnosis: A one-year prospective study

“…The drop-outs during the study were explained by increased sickness in the patients, a factor that was out of our control during the year-long data collection. This reason for drop-outs has been previously described in the literature related to severe or advanced cancer patients [11,21]. Therefore, the performed statistical analyses were less powerful, and logistic regression analysis should be considered from a descriptive perspective.…”

“…Earlier studies on family members’ HRQOL have been conducted during palliative care starting from the cancer patient’s diagnosis, with the centre of attention at the time point close to or after death [11,21]. …”

Culture and End of Life Care: A Scoping Exercise in Seven European Countries

“…Studies of carers examined their characteristics [172], concerns [173], activities [174], effects of caring [162], [168], [171], [175], [176], and setting where the care was provided [168], [173].…”

Impact on caregiver burden of a patient-focused palliative care intervention for patients with advanced cancer

“…Caregiver burden has also been identified as an independent risk factor for mortality: controlling for demographics and co-morbid disease, caregivers were 63% more likely to die within a 4-year span than non-caregiver controls (Schulz & Beach, 1999). Although the negative effects of caregiving are most pronounced in caregivers of patients with dementia, informal caregivers of patients with cancer also report worse mental health (Ringdal et al, 2004; Braun, Mikulincer, Rydall, Walsh, & Rodin, 2007; Janda et al, 2007; Rhee et al, 2008). In addition, caring for someone with a slow-developing cancer, such as colon or lung cancer, has been shown to increase 9-year mortality rates versus caregivers of patients with ‘quick’ cancers (Elwert & Christakis, 2008).…”