Is accurate routine cancer prognostication psychologically harmful? 5-year outcomes of life expectancy prognostication in uveal melanoma survivors

Brown, Stephen L.; Fisher, Peter; Hope‐Stone, Laura; Damato, Bertil; Heimann, Heinrich; Hussain, Rumana; Cherry, Mary Gemma

doi:10.1007/s11764-021-01036-4

Cited by 9 publications

(32 citation statements)

References 40 publications

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“…Research has shown that the majority of melanoma patients wish to have full information about their diagnosis and prognosis [ 18 ] but there is very little exploring the psychological impact of prognosis on patients with Stage I/II cutaneous melanoma. There are studies with patients with uveal melanoma and the most recent, a five-year study of 708 survivors with a poor or good prognosis and those who had declined testing, reports ‘that harm accruing from a poor prognosis was statistically significant over 5 years but did not exceed general non-cancer population norms.’ [ 19 ]. The authors conclude that clinicians should inform patients that there may be adverse psychological consequences in the event of a poor prognosis.…”

Section: Discussionmentioning

confidence: 99%

Health professional and patient views of a novel prognostic test for melanoma: A theoretically informed qualitative study

et al. 2022

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Objectives Cutaneous melanoma rates are steadily increasing. Up to 20% of patients diagnosed with AJCC Stage I/II melanomas will develop metastatic disease. To date there are no consistently reliable means to accurately identify truly high versus low-risk patient subpopulations. There is hence an urgent need for more accurate prediction of prognosis to determine appropriate clinical management. Validation of a novel prognostic test based on the immunohistochemical expression of two protein biomarkers in the epidermal microenvironment of primary melanomas was undertaken; loss of these biomarkers had previously been shown to be associated with a higher risk of recurrence or metastasis. A parallel qualitative study exploring secondary care health professional and patient views of the test was undertaken and this paper reports the perceived barriers and enablers to its implementation into the melanoma care pathway. Methods Qualitative methods were employed drawing upon the Theoretical Domains Framework (TDF) in the exploration and analysis. An inductive-deductive analysis was performed, with all data coded using a thematic then TDF framework. Findings 20 dermatologists, plastic surgeons, cancer nurse specialists, oncologists and histopathologists participated. Nine TDF domains were relevant to all health professional groups and the ‘Skills’ and ‘Beliefs about Capabilities’ domains were relevant only to histopathologists. ‘Optimism’ and ‘Beliefs about consequences’ were strong enablers particularly for clinicians. ‘Environmental context and resources’ (impact on pathology services) and ‘Knowledge’ (the need for robust evidence about the test reliability) were the main perceived barriers. 19 patients and one carer were interviewed. For the patients eight domains were relevant. (‘Knowledge’, ‘Emotions’, ‘Beliefs about consequences’, ‘Social Role and identity’, ‘Behavioural regulation’, ‘Memory, attention and decision processes’, ‘Reinforcement’ and ‘Skills’). The consequences of the implementation of the test were reassurance about future risk, changes to the follow-up pathway on which there were mixed views, and the need to ensure they maintained self-surveillance (Beliefs about consequences). The test was acceptable to all patient interviewees but the resultant changes to management would need to be supported by mechanisms for fast-track back into the clinic, further information on self-surveillance and clear management plans at the time the result is conveyed (Behavioural regulation). Conclusions Health professionals and patients perceived positive consequences—for patients and for health services—of adopting the test. However, its implementation would require exploration of the resource implications for pathology services, psychological support for patients with a high-risk test result and mechanisms to reassure and support patients should the test lead to reduced frequency or duration of follow-up. Exploring implementation at an early stage with health professionals presented challenges related to the provision of specific details of the test and its validation.

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Section: Discussionmentioning

confidence: 99%

Health professional and patient views of a novel prognostic test for melanoma: A theoretically informed qualitative study

et al. 2022

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“…Participants were offered prognostication at a single unit that has offered prognoses for over 15 years 10,34,42 . Transfer of the UM paradigm to other cancers needs to be handled carefully.…”

Section: Discussionmentioning

confidence: 99%

“…Outcomes of a good prognosis do not differ from no prognosis. Distress in the poor prognosis group may not significantly exceed healthy age and gender‐matched population means 10,34 . Population characteristics mask individual variability.…”

Section: Introductionmentioning

confidence: 99%

“…The nature of practitioner support will depend upon identifying and targeting specific reasons why decisions may or may not be well‐considered. However, decision‐making about undergoing testing and receiving a prognosis in UM is not well understood 10 . We used a sample of UM patients who chose prognostication because the risk of distress becomes elevated only after a poor prognosis.…”

Section: Introductionmentioning

confidence: 99%

“…1 Receipt of accurate but irreversible poor prognoses can cause potentially severe psychological distress. 10 , 11 , 12 , 13 This subtly changes the focus of prognostic decision‐making. With more accurate predictions, but few ameliorative treatments, people need to make a finely balanced decision as to whether they prefer certainty or uncertainty, and whether to risk the psychological burden of a poor prognosis.…”

Section: Introductionmentioning

confidence: 99%

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‘I Don't Like Uncertainty, I Like to Know’: How and why uveal melanoma patients consent to life expectancy prognostication

Brown

Fisher

Morgan

et al. 2022

Health Expectations

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Background: Technological advances have led to cancer prognostication that is increasingly accurate but often unalterable. However, a reliable prognosis of limited life expectancy can cause psychological distress. People should carefully consider offers of prognostication, but little is known about how and why they decide on prognostication.Using uveal melanoma (UM) patients, we aimed to identify (i) how and why do people with UM decide to accept prognostication and (ii) alignment and divergence of their decision-making from conceptualizations of a 'well-considered' decision.Methods: UM provides a paradigm to elucidate clinical and ethical perspectives on prognostication, because prognostication is reliable but prognoses are largely nonameliorable. We used qualitative methods to examine how and why 20 UM people with UM chose prognostication. We compared findings to a template of 'well-considered' decisionmaking, where 'well-considered' decisions involve consideration of all likely outcomes.Results: Participants wanted prognostication to reduce future worry about uncertain life expectancy. They spontaneously spoke of hoping for a good prognosis when making their decisions, but largely did not consider the 50% possibility of a poor prognosis. When pressed, they argued that a poor outcome at least brings certainty.Conclusions: While respecting decisions as valid expressions of participants' wishes, we are concerned that they did not explicitly consider the realistic possibility of a poor outcome and how this would affect them. Thus, it is difficult to see their

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Seven-year distress trajectories in uveal melanoma survivors.

Brown¹,

Hope‐Stone²,

Cherry³

2023

Health Psychology

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Objective: Severe or persistent distress is associated with poorer quality of life in cancer survivors. Distress follows distinct trajectories within different population subgroups. Identifying characteristics and causes of trajectories can assist intervention development and targeting. In a 7-year study of uveal melanoma survivors, we aimed to characterize anxiety, depression, and fear of cancer recurrence (FCR) trajectories, and identify whether concerns about symptoms and functional problems over the first 3 years of survivorship predict memberships of high distress trajectories. Method: In a closed cohort study, we used growth mixture modeling (GMM) to identify statistically optimal trajectories over 6-, 12-, 24-, 36-, 48-, 60-, 72-, and 84-month time point posttreatment in 475 patients. We then regressed trajectory memberships onto a 3-year series of measures of concerns about symptoms and functional problems, controlling demographic, clinical, and 6-month anxiety, depression, or FCR indicators. Results: Anxiety, depression, and FCR were represented by two-class linear GMMs. The majority scored consistently low, but 17.5% showed consistently elevated anxiety, 10.9% consistently elevated depression, and 19.4% consistently elevated FCR. Higher anxiety trajectory membership was predicted by greater concerns about symptoms at 6 and 24 months, higher depression trajectory membership by symptoms at 24 months, and higher FCR trajectory membership by symptoms at 6 and 24 months and functional problems at 12 months. Conclusions: Much of the burden of persistent distress in cancer patients falls on a small proportion of survivors. Concerns about symptoms and functional problems are potential risk factors for distress.

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Is accurate routine cancer prognostication psychologically harmful? 5-year outcomes of life expectancy prognostication in uveal melanoma survivors

Cited by 9 publications

References 40 publications

Health professional and patient views of a novel prognostic test for melanoma: A theoretically informed qualitative study

Health professional and patient views of a novel prognostic test for melanoma: A theoretically informed qualitative study

‘I Don't Like Uncertainty, I Like to Know’: How and why uveal melanoma patients consent to life expectancy prognostication

Seven-year distress trajectories in uveal melanoma survivors.

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