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

Disclosures

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

Abstract and Introduction

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.

Introduction

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.

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Table 1. Participants' characteristics
Participant	Sex	Age (years)	Performance status^a,b	LDH^a	Brain metastases^a	Treatment	Start of ICIs (year)	Best tumour response^c	Treatment duration of ICIs (months)	Reason for discontinuation of ICIs
Interview participants
1	F	32	WHO 0	125	No	Nivolumab	2018	PR	6	OR
2	M	78	WHO 0	206	Unknown	Nivolumab	2017	PR	20	OR
3	F	45	WHO 0	345	Unknown	Pembrolizumab	2016	CR	7	OR
4	M	72	WHO 0	228	Unknown	Pembrolizumab	2016	PR	16	OR
5	F	38	WHO 0	147	Unknown	Nivolumab	2018	PR	5	AE, OR
6	F	61	WHO 0	151	No	Nivolumab	2017	CR	3	AE, OR
7	F	59	WHO 1	440	Yes	Nivolumab	2019	PR	5	OR
8	M	48	WHO 2	278	Yes	Ipilimumab, nivolumab	2019	PR	–	–
9	M	51	WHO 1	1197	No	Ipilimumab, nivolumab	2018	PR	24	OR
10	F	40	WHO 1	771	Yes	Ipilimumab, nivolumab	2020	PR	–	–
11	M	43	WHO 0	184	Unknown	Nivolumab	2016	CR	12	OR
Focus group participants
12	F	50	WHO 0	147	Yes	Pembrolizumab	2014	CR	24	OR
13	M	46	WHO 0	158	No	Nivolumab	2017	CR	12	OR
14	F	51	WHO 0	148	No	Nivolumab	2018	PR	6	AE, OR
15	M	37	WHO 0	220	Yes	Ipilimumab, nivolumab	2017	PR	24	OR
16	M	56	WHO 0	187	Unknown	Nivolumab	2017	CR	12	OR
17	M	53	WHO 0	221	Unknown	Pembrolizumab	2016	CR	24	OR
18	F	42	WHO 0	200	Unknown	Pembrolizumab	2016	CR	24	OR
19	M	83	WHO 0	332	Unknown	Nivolumab	2016	PR	12	AE, OR
20	M	52	WHO 1	264	No	Ipilimumab, nivolumab	2018	PR	2	AE, OR

AE, adverse event; CR, complete response; F, female; ICI, immune checkpoint inhibitor; LDH, lactate dehydrogenase in U L⁻¹; M, male; OR, ongoing tumour response; PR, partial response. ^aAt the start of ICIs. ^bAssessed using World Health Organization Performance Status criteria. ^cAccording to the Response Evaluation In Solid Tumors (RECIST) 1.1 criteria.⁵⁷

Table 2. Overview of themes on experiences and needs of survivorship care
Main themes	Subthemes	Categories
1 Dealing with a switch in prognosis	1.1 Mixed feelings and emotions regarding prognosis switch	Feelings of gratitude
		Difficult to understand and/or believe
		Feelings of anger
	1.2 Facing an uncertain future	Stress caused by uncertain future
		Loss of trust in body
		Fear of recurrence and dying
		Lack of understanding by close relatives
2 Challenges to proceed with life as prior to metastatic cancer	2.1 Demands and expectations to resume life again	High demands in several life domains
		High expectations of oneself
		Assumptions about being 'cured' by surroundings
	2.2 Persistent complaints and new problems in different life domains	Persistent physical and psychological complaints
		Late effects of treatment
		Issues in returning to work
		Negative influence on social life
		Problems felt by close relatives
3 Finding a new balance	3.1 Coping with uncertainty	Concerns about living with limitations
		Trust in body needs to be regained
		Staying hopeful and optimistic
	3.2 Changed perspective on life, re-evaluation of close relationships and changed personality	Enjoy life more fully
		Stronger connection with religion
		Re-evaluating the importance of close relationships
		Friendlier and less worried about little things in life
		More easily irritated
		Not knowing who you are
	3.3 Towards no longer being a patient	Continued feeling of being a patient
	3.3 Towards no longer being a patient	Being 'the one with cancer'
4 Needs regarding (medical) information and care	4.1 Need for tailored patient information, available at one location	Information tailored to individual's situation
		Information tailored to individual's needs
		Information in understandable language
	4.2 Need for periodic and additionally flexible follow-up	Periodic follow-up checks provide reassurance
	4.2 Need for periodic and additionally flexible follow-up	Additional flexible follow-up when needed
5 Falling between two stools: need for broader supportive care	5.1 Need to know where to go and whom to turn to	Information about available care options
	5.1 Need to know where to go and whom to turn to	Information about whom to turn to with questions and problems
	5.2 Need for psychosocial support	Practical and personal information
		Psychological information and support
		Access to peer support
		Work-related information and support
	5.3 Need for support for close relatives	Support in dealing with consequences of disease

Table 3. Dealing with a switch in prognosis
Subthemes	Quotes
1.1 Mixed feelings and emotions regarding prognosis switch	'Well, first you're told that you might make it to Christmas this year. Then a month later, you're told you might survive 10 or 15 years. I just can't understand it. That's what's on my mind these days…that I uh, cannot understand that I'll live longer. I don't understand. I can't have fun anymore.' – Individual interview, male, 48 (patient 8)
1.2 Facing an uncertain future	When I feel pain or something…I'll think oh no, it better not be…and it'll stay that way for a while, but that's something I hear from all people who have had cancer. With every pain you think, oh no, it's not back, is it? And yeah, I can relate, that that's the way you think. – Individual interview, female, 59 (patient 7)

Table 4. Challenges to proceed with life as prior to metastatic cancer
Subthemes	Quotes
2.1 Demands and expectations to resume life again	'Life demands so much of you again. Your children grow up and need guidance. And, marriage isn't as easy as you would like and yeah, you just have to move on. You have to fight for yourself again, and for your family, and your marriage, and you can no longer think only of yourself. You just can't.' – Individual interview, female, 45 (patient 3)
2.2 Persistent complaints and new problems in different life domains	'Well, dramatic. They [PEIA] see the file, "cancer"; yep, you're declared unfit for work.' – Focus group, male, 53 (patient 17)

PEIA, Public Employee Insurance Agency.

Table 5. Finding a new balance
Subthemes	Quotes
3.1 Coping with uncertainty	'You have to start trusting your own body again. Because, it's gone wrong so many times, in the beginning it's like, oh I feel something, if I still feel it tomorrow, then I have to call someone. Things like that. There's no safety line anymore. Suddenly you're on your own again. It's quite strange.' – Individual interview, female, 38 (patient 5)
3.2 Changed perspective on life, revaluation of close relationships and changed personality	'You enjoy completely different things! I started to walk a lot and sometimes it happens it suddenly starts to rain. I used to hate walking and now I walk in the rain while smiling.' – Individual interview, male, 51 (patient 9)
3.3 Towards no longer being a patient	'When it comes to cancer, I don't feel like a patient anymore because I'm no longer receiving treatments. Except for the day I have to get a [computed tomography] scan. Then I think yes, that was because of the cancer, and then the next week when I visit the oncologist. Yes, I WAS a cancer patient. That's how I think about it at the moment.' – Individual interview, female, 59 (patient 7)

Table 6. Survivorship care needs
Subthemes	Quotes
4.1 Need for tailored patient information, available at one location	'I'd like the information to be provided from my – the patients' – perspective. Sometimes it can be too clinical from the doctors' perspective.' – Individual interview, female, 38 (patient 5)
4.2 Need for periodic and additionally flexible follow-up	'Every three months, that's fine by me. That is, yes, I might think in the future when they say come back in six months' time, that six months might be too long. But, of course, there's also a certain trust that you have to rebuild within yourself.' – Individual interview, male, 51 (patient 9)
5.1 Need to know where to go and whom to turn to (contact person)	'Well, I think when I look at myself, because for me the survivorship care has not always been optimal. But then I went looking for information myself. I wish there would be something where, if you do have issues with nutrition for example, where you could just find solutions for these problems.' – Individual interview, female, 38 (patient 5)
5.2 Need for psychosocial support	'Yes, I think…yes, I think that um…psychologist, that's an important one with survivorship care, knowing myself (laughs), or at least, someone you can talk to. I know that in difficult situations, or just…uh…yes, I just carry on and everything goes well, and then afterwards, when the stress subsides, so to speak, when everything is resolved and in a calm state of affairs, only then do the emotions surface with me. Then it hits me.' – Individual interview, female, 40 (patient 10)
5.3 Need for support for close relatives	Patient: 'Your family also needs help.' Interviewer: 'Okay, you're saying that the family should be offered help as well?' Patient: 'Yes, my husband got no explanation and every time people asked him "How is your wife?". Not once: "How are you?".' – Focus group, female, 42 (patient 18)