Experiences of Resuming Life After Immunotherapy and Associated Survivorship Care Needs

A Qualitative Study Among Patients With Metastatic Melanoma

Nadia C.W. Kamminga; Astrid A.M. van der Veldt; Margot C.W. Joosen; Karlijn de Joode; Arjen Joosse; Dirk J. Grünhagen; Tamar E.C. Nijsten; Marlies Wakkee; Marjolein Lugtenberg


The British Journal of Dermatology. 2022;187(3):381-391. 

In This Article

Abstract and Introduction


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.


Worldwide, nearly 300 000 patients are newly diagnosed with cutaneous melanoma each year.[1] In metastatic melanoma, multiple advances in treatment options have led to improved overall survival, especially immune checkpoint inhibitors (ICIs).[2–5] Consequently, ICIs have converted a historically incurable cancer with a very poor prognosis into a potentially curable disease.[6]

Therefore, an increasing number of patients with metastatic melanoma face the challenge of resuming life after successful treatment, which is potentially associated with severe and long-term consequences of treatment-related adverse events.[7] Research among patients with other types of cancer has shown that returning to normal life after treatment may be difficult; they may face persistent or recurring physical symptoms, as well as emotional, psychosocial and work-related complaints.[8–11] Moreover, the often unexpected switch in prognosis (i.e. expected death vs. recovery) could be difficult to cope with.[12]

To deal with the challenges and long-term consequences of both disease and treatment, the American Institute of Medicine recommends providing survivorship care (SSC) to all cancer survivors after completing primary treatment.[13] SSC aims at informing and supporting patients, ensuring access to effective interventions and improving their quality of life.[13,14] While research on SSC among melanoma survivors – in this study defined as patients with metastatic melanoma with durable tumour responses following treatment with ICIs – is still lacking, research in other types of metastatic and nonmetastatic cancer has shown that patients are often left with numerous unmet needs when it comes to SSC.[15,16]

Previous quantitative studies among patients with melanoma have shown they may also face physical and emotional problems after treatment,[17,18] and a first qualitative exploration of experiences of patients who have recovered from stage I–IV melanoma showed multiple challenges.[19] However, qualitative in-depth research focusing on this topic is currently lacking. Therefore, the aim of this study was to gain an in-depth understanding of metastatic melanoma survivors' experiences of resuming life after ICIs, and their associated SSC needs.