The relatives' perspective on advanced cancer care in Denmark. A cross-sectional survey

In order to improve advanced cancer care, evaluations are necessary. An important element of such evaluations is the perspective of the patient's relatives who have the role of being caregivers as well as co-users of the health care system. The aims were to investigate the scale structure of the FAMCARE scale, to investigate satisfaction with advanced cancer care from the perspective of the relatives of a representative sample of advanced cancer patients, and to investigate whether some sub-groups of relatives were more dissatisfied than others.

From 977 patients treated at 54 different Danish hospital departments, 569 patients provided us with the name and address of their relative. Of these, 544 received the FAMCARE scale that measures the families' satisfaction with advanced cancer care. For the four FAMCARE sub-scales, internal consistency was analyzed using Cronbach's alpha; convergent and discriminant validity was analyzed using multitrait-scaling analysis. Associations between the relatives' dissatisfaction and clinical and sociodemographic variables were investigated in explorative analyses using multiple logistic regressions.

Of the relatives receiving the questionnaire, 467 (86%) responded. The original scale structure of FAMCARE could not be supported in the present sample, and therefore, results are reported at singe-item level. The proportion of dissatisfied relatives ranged from 5% to 28% (median 13%). Highest levels of dissatisfaction were found for time taken to make a diagnosis (28%) and the speed with which symptoms were treated (25%). Younger relatives were more dissatisfied than older relatives. Other sociodemographic and clinical variables had little impact on the relatives' levels of satisfaction.

The relatives' level of dissatisfaction with some of the areas included in this survey needs to be taken seriously. Younger relatives were most dissatisfied.