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

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Abstract

Purpose

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.

Method

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.

Results

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.

Conclusion

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

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Acknowledgements

The study was supported by the Danish Cancer Society (PP01006, PP05033, and PP07031) and the Ministry of Health’s Grant for Development and Analysis (2003-0201-39). We also wish to thank all the hospital departments participating in the study, the students contributing to the collection of data, and, not the least, the patients and their relatives participating in the study.

Conflict of Interests

The authors have no conflicts of interests to declare. The authors have full control of all primary data and agree to allow the journal to review the data if requested.

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Authors and Affiliations

  1. The Research Unit, Department of Palliative Medicine, Bispebjerg Hospital 20D, Bispebjerg bakke 23, 2400, Copenhagen, NV, Denmark

    Anna T. Johnsen, Lone Ross, Morten A. Petersen, Line Lund & Mogens Groenvold

  2. Institute of Public Health, University of Copenhagen, Oester Farimagsgade 5, 1014, Copenhagen, K, Denmark

    Mogens Groenvold

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  1. Anna T. Johnsen
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  2. Lone Ross
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  3. Morten A. Petersen
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  4. Line Lund
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  5. Mogens Groenvold
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Correspondence to Anna T. Johnsen.

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Johnsen, A.T., Ross, L., Petersen, M.A. et al. The relatives’ perspective on advanced cancer care in Denmark. A cross-sectional survey. Support Care Cancer 20, 3179–3188 (2012). https://doi.org/10.1007/s00520-012-1454-3

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  • DOI: https://doi.org/10.1007/s00520-012-1454-3

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