Unexpected survivorship: Problems and supportive care needs of advanced melanoma survivors.

Abstract

Title: Unexpected survivorship: Problems and supportive care needs of advanced melanoma survivors.

Background: Of the advanced melanoma patients 22% can now become a survivor because of the approval of the treatment with ipilimumab in 2011. This unexpected survivorship encompasses managing the long-term consequences of the disease and/or treatment. Providing supportive care can be helpful in managing these consequences and can improve the quality of life (QoL). Despite these insights no research has been done to examine the supportive care needs of the unexpected advanced melanoma survivor.

Research Question: What are the problems and supportive care needs of advanced melanoma survivors who have been treated with ipilimumab and have survived their disease for at least two years?

Method: This was an explorative and qualitative study among survivors and caregivers. Unstructured interviews were conducted with 11 individuals and one focus group consisting of four professionals was held.

Results: The following four main themes were identified from data: Psychosocial domain (anxiety about the future, mental health problems, coping), social support (reactions of others, trust in caregivers), daily life (continuing daily life, problems with daily life, physical problems) and communication (experienced threshold in communication with caregivers, absence of follow-up by caregivers, need for a contact person during follow-up).

Conclusion: The outcome describes a unique perspective on follow-up care within a newly formed group of melanoma survivors. The majority continued life as it was before the diagnosis. Each individual survivor, however, had their own problems which need a custom, person-centered approach of primarily non-medical supportive care.

Recommendations: It is recommended to conduct research specifying which of the caregivers can provide the best supportive care and aimed at developing a person-centered model of supportive care that meets the needs of the survivors to improve their health related QoL.