Certainty within uncertainty: a qualitative study of the experience of metastatic melanoma patients undergoing pembrolizumab immunotherapy

Levy, David; Dhillon, Haryana M.; Lomax, Anna J; Marthick, Michael; McNeil, Catriona M.; Kao, Steven; Lacey, Judith

doi:10.1007/s00520-018-4443-3

Cited by 52 publications

(91 citation statements)

References 29 publications

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“…About half of the survivors (53%) reported fear of cancer recurrence and emotional coping difficulties related to the uncertainty of surviving a potentially lethal disease with a novel treatment of which the long-term outcome remained unknown at the time of the start of this experimental treatment. This is consistent with the findings of Levy et al describing the burden of uncertainty in patients on active ICI treatment [ 35 ]. Posttraumatic stress disorder was present in one-third of the survivors and was related to the moment of receiving a diagnosis of incurable cancer, the traumatic course of disease progression, or the occurrence of irAEs.…”

Section: Discussionsupporting

confidence: 93%

Neurocognitive Function, Psychosocial Outcome, and Health-Related Quality of Life of the First-Generation Metastatic Melanoma Survivors Treated with Ipilimumab

Rogiers

Leys

Lauwyck

et al. 2020

Journal of Immunology Research

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Purpose. To assess neurocognitive function (NCF), psychosocial outcome, health-related quality of life (HRQoL), and long-term effects of immune-related adverse events (irAE) on metastatic melanoma survivors treated with ipilimumab (IPI). Methods. Melanoma survivors were identified within two study populations (N=104), at a single-center university hospital, and defined as patients who were disease-free for at least 2 years after initiating IPI. Data were collected using 4 patient-reported outcome measures, computerized NCF testing, and a semistructured interview at the start and 1-year follow-up. Results. Out of 18 eligible survivors, 17 were recruited (5F/12M); median age is 57 years (range 33-86); and median time since initiating IPI was 5.6 years (range 2.1-9.3). The clinical interview revealed that survivors suffered from cancer-related emotional distress such as fear of recurrence (N=8), existential problems (N=2), survivor guilt (N=2), and posttraumatic stress disorder (N=6). The mean EORTC QLQ-C30 Global Score was not significantly different from the European mean of the healthy population. Nine survivors reported anxiety and/or depression (Hospitalization Depression Scale) during the survey. Seven survivors (41%) reported fatigue (Fatigue Severity Scale). Seven patients (41%) had impairment in NCF; only three out of seven survivors had impairment in subjective cognition (Cognitive Failure Questionnaire). Anxiety, depression, fatigue, and neurocognitive symptoms remained stable at the 1-year follow-up. All cases of skin toxicity (N=8), hepatitis (N=1), colitis (N=3), and sarcoidosis (N=1) resolved without impact on HRQoL. Three survivors experienced hypophysitis; all suffered from persistent fatigue and cognitive complaints 5 years after onset. One survivor who experienced a Guillain-Barré-like syndrome suffered from persisting depression, fatigue, and impairment in NCF. Conclusion. A majority of melanoma survivors treated with IPI continue to suffer from emotional distress and impairment in NCF. Timely detection in order to offer tailored care is imperative, with special attention for survivors with a history of neuroendocrine or neurological irAE. The trial is registered with B.U.N. 143201421920.

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Section: Discussionsupporting

confidence: 93%

Neurocognitive Function, Psychosocial Outcome, and Health-Related Quality of Life of the First-Generation Metastatic Melanoma Survivors Treated with Ipilimumab

Rogiers

Leys

Lauwyck

et al. 2020

Journal of Immunology Research

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“…It is characterized by ambiguity, complexity, lack of information and unpredictability . A recent study of the lived experiences of patients with metastatic melanoma undergoing checkpoint inhibitor treatment reported that cyclical uncertainty across investigation and treatment episodes characterized their experiences . Findings from the present study extend this knowledge by providing new insight into the experience of uncertainty by bereaved carers.…”

Section: Discussionsupporting

confidence: 64%

“…Such conversations may also reveal unvoiced expectations, such as those shown by the carers in our study, who experienced difficulties reconciling a diagnosis of advanced disease associated with seemingly trivial symptoms, or a possible terminal prognosis when the patient looked healthy and continued to live an active life. That patients with advanced melanoma wish to – and largely can – live ordinary lives has previously been reported, as has a denial of awareness of the seriousness of a patient's disease on the part of family members, in response to an uncertain prognostic trajectory . Clinical practice guidelines recommend an open disclosure policy when discussing prognosis; however, the present study highlights the importance of checking the type of information the patient and/or carer wishes to know and at what level of detail, and addressing the often unspoken expectations of patients and carers, which may be discordant with the information provided by medical specialists.…”

Section: Discussionmentioning

confidence: 71%

Uncertain diagnosis and prognosis in advanced melanoma: a qualitative study of the experiences of bereaved carers in a time of immune and targeted therapies

et al. 2019

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Summary Background Recent advances in advanced melanoma therapies are associated with improved survival for some patients. However, how patients with diagnoses of advanced disease and their carers experience this expanding treatment paradigm is not well understood. Objectives To explore bereaved carers’ accounts of the trajectory of advanced melanoma involving treatment by immune or targeted therapies, to build an understanding of their experiences of care relating to diagnosis and prognosis. Methods A qualitative exploratory design, using methods drawn from grounded theory, was adopted. Analyses drew on in‐depth interviews with 20 bereaved carers from three metropolitan melanoma treatment centres in Australia. A flexible interview guide and structured approach to concurrent data collection and analysis were applied. Results Carers described qualities of the experience, including the shock of diagnosis after a sometimes‐innocuous presentation with vague symptoms. They reported an unclear prognosis with complexity arising from interplay between an uncertain disease trajectory and often ambiguous expectations of outcomes of emerging immune and targeted therapies. Uncertainty dominated carers’ experiences, increasing the complexity of care planning. Conclusions Effective communication of an advanced melanoma diagnosis and prognosis is critical. Recognition of the uncertainty inherent in the benefit of immune and targeted therapies in a constructive manner may facilitate more timely and effective care‐planning conversations between patients, carers and medical specialists.

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“…Adverse events should not just be seen as a direct result of immunotherapy, such as fatigue, colitis, pancreatitis and various others 17 . As Levy et al describe, living with melanoma under immunotherapy could be compared to living in a phase of uncertainty, like playing a Russian roulette 18 . Particularly noteworthy was the fact that all grades of adverse events had an impact on the quality of life of the patient, besides the less common adverse events 19 …”

Section: Discussionmentioning

confidence: 99%

Therapy preferences in melanoma treatment—Willingness to pay and preference of quality versus length of life of patients, physicians, healthy individuals and physicians with oncological disease

2020

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Background In recent years, monoclonal antibodies such as ipilimumab, nivolumab, and pembrolizumab have made a significant impact on the treatment of advanced melanoma. Combination of immune checkpoint inhibitors leads to improved survival and response rates of 58%‐61% as compared to monotherapy (36%‐44%). However, the price for the better response rates is also a higher frequency of severe adverse events (59%) as compared to monotherapy (17%‐21%). This study examines attitudes towards melanoma therapy options of physicians, healthy individuals, melanoma patients, and physicians with oncological disease, their willingness to pay, and preference of quality versus length of life. Methods After obtaining ethical approval and informed consent surveys were conducted in 111 participants divided into four groups: melanoma patients (n = 30), healthy individuals as controls (n = 30), physicians (n = 27), and physicians with oncological disease (n = 24). Statistical analyses were conducted using SPSS statistics (version 25, IBM), applying the Pearson´s chi‐squared test, Spearman correlation coefficient, Wilcoxon‐Mann‐Whitney test, and Kruskal‐Wallis test. Results Life prolongation is more valued by melanoma patients and physicians with oncological disease compared to healthy controls and healthy physicians. In total, 30% of melanoma patients opt for a life prolonging therapy in all cases, even if this life prolongation is only marginal. Physicians are the strongest proponents of combination immunotherapy. Conclusion The valuation of the different treatment options differs in the four study groups with affected people valuing life prolongation much more. The individual value of cancer therapies is high, but differs from the societal standpoint.

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Certainty within uncertainty: a qualitative study of the experience of metastatic melanoma patients undergoing pembrolizumab immunotherapy

Abstract: Despite progress in melanoma patient treatment and outcomes, these patients face sustained uncertainty about their disease trajectory.

Cited by 52 publications

References 29 publications

Neurocognitive Function, Psychosocial Outcome, and Health-Related Quality of Life of the First-Generation Metastatic Melanoma Survivors Treated with Ipilimumab

Neurocognitive Function, Psychosocial Outcome, and Health-Related Quality of Life of the First-Generation Metastatic Melanoma Survivors Treated with Ipilimumab

Uncertain diagnosis and prognosis in advanced melanoma: a qualitative study of the experiences of bereaved carers in a time of immune and targeted therapies

Therapy preferences in melanoma treatment—Willingness to pay and preference of quality versus length of life of patients, physicians, healthy individuals and physicians with oncological disease

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