Experiences of resuming life after immunotherapy and associated survivorship care needs: a qualitative study among patients with metastatic melanoma

Abstract

Background Immune checkpoint inhibitors (ICIs) have significantly improved the overall survival of patients with metastatic melanoma. It is unclear how the growing group of metastatic melanoma survivors resume their lives after treatment, and which needs they have regarding survivorship care (SSC). Objectives To gain an in-depth understanding of metastatic melanoma survivors' experiences of resuming life after ICIs and their associated SSC needs. Methods A qualitative study was conducted among 20 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. Results 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 it was 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. Conclusions 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.

Living in the twilight zone: a qualitative study on the experiences of patients with advanced cancer obtaining long-term response to immunotherapy or targeted therapy

“…Similar to a recent study among advanced melanoma patients receiving immunotherapy, we found that social relationships of long-term responders are challenged [22]. Especially those who have been living for many years with an advanced cancer diagnosis experience that the social environment often does not know to what extent a longterm responder is healthy or ill. Others either under-or overestimate the long-term responder.…”

“…Especially those who have been living for many years with an advanced cancer diagnosis experience that the social environment often does not know to what extent a longterm responder is healthy or ill. Others either under-or overestimate the long-term responder. For example, when the long-term responder looks healthy, others assume that the person also feels energetic, or when others learn someone has advanced cancer, they become overprotective [22,23].…”

Publication Trends of Qualitative Research in Dermatology

“…Figure 1 shows the PRISMA flow diagram of the selection criteria. A total of 1398 studies were screened, and 249 studies (17.8%) were ultimately included in the database …”

Asking important questions: exploring ongoing psychosocial healthcare needs using qualitative methods

“…In this issue of the BJD , Kamminga et al 4 . highlight currently unmet healthcare needs in people treated for metastatic melanoma.…”

“…In this issue of the BJD, Kamminga et al 4 highlight currently unmet healthcare needs in people treated for metastatic melanoma. As Kamminga et al show, even when treatment is successful, the psychological impact of a health condition can be significant, and it should not be assumed that medical treatment alone will resolve the difficulties associated with the condition.…”