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*

*Corresponding author for this work

Research output: Contribution to journalArticleScientificpeer-review

16 Citations (Scopus)
65 Downloads (Pure)

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.
Original languageEnglish
Pages (from-to)381-391
JournalThe British Journal of Dermatology
Volume187
Issue number3
DOIs
Publication statusPublished - 2022

Keywords

  • Humans
  • Immune Checkpoint Inhibitors
  • Immunologic Factors/therapeutic use
  • Immunotherapy
  • Melanoma/pathology
  • Neoplasms, Second Primary
  • Quality of Life/psychology
  • Survivors/psychology
  • Survivorship

Fingerprint

Dive into the research topics of 'Experiences of resuming life after immunotherapy and associated survivorship care needs: A qualitative study among patients with metastatic melanoma'. Together they form a unique fingerprint.

Cite this