Publication date: May 21, 2022
Immune checkpoint inhibitors (ICIs) have improved the overall survival of patients with metastatic melanoma significantly. It is unclear how the growing group of metastatic melanoma survivors resume their life after treatment and which needs they have regarding survivorship care (SSC). To gain an in-depth understanding of metastatic melanoma survivors’ experiences of resuming life after ICIs and their associated SSC needs. A qualitative study was conducted among twenty patients with metastatic melanoma in whom ICIs had been discontinued after ongoing tumour response. One focus group (n=9) was held, which was complemented by 11 individual interviews. Purposive sampling was used to select a variable sample in terms of sex, age, time since discontinuation of ICIs, and perceived impact of the disease. A topic guide was used to structure the (group) interviews, which were transcribed verbatim and analysed in a thematic content analysis, using several phases of coding. In resuming life after ICIs, the prognosis switch often caused mixed feelings among patients, mainly because of the uncertainty about the future. Demands and expectations from self and others, persistent complaints and new problems in different life domains often make it challenging to proceed with life as prior to metastatic cancer. Patients indicated they needed to find a new balance which included learning to cope with uncertainty and a changed perspective on life and close relationships. In terms of SSC needs, patients particularly stressed the need for more tailored patient information, available at one location. In addition, they emphasized the need to know who to turn to in case of questions and indicated the need for psychosocial support, also for their close relatives. Metastatic melanoma survivors face various challenges in resuming life after ICIs and are left with several unmet SSC needs. Efforts should be focused on offering psychosocial supportive care in addition to medical care, from diagnosis onwards, taking into account the patient’s close relatives. A single point of contact and personalized survivorship care plan (SCP) could be of added value in guiding them through the patient journey which is, given its multidisciplinary nature, particularly important in melanoma care.