Psychosocial impact of prognostic genetic testing in uveal melanoma patients: a controlled prospective clinical observational study

Lieb, Marietta; Tagay, Sefik; Breidenstein, Anja; Hepp, Tobias; Guin, Claudia H D Le; Scheel, Jennifer; Lohmann, Dietmar; Bornfeld, Norbert; Teufel, Martin; Erim, Yeşim

doi:10.1186/s40359-020-0371-3

Cited by 14 publications

(56 citation statements)

References 46 publications

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“…Previous UM studies [ 3 , 14 , 15 ] have generally not detected greater psychological harm associated with poor prognosis, although Hope-Stone et al [ 15 ] found higher depression scores. Our study was more highly powered, and it is likely that we detected a small effect that had been missed in previous smaller samples.…”

Section: Discussionmentioning

confidence: 97%

“…In a sample of 99 survivors, Beran et al [ 3 ] found no indication of greater depressive symptoms or lower QoL associated with a poor prognosis compared to a good prognosis. In 175 survivors with follow-up exceeding 12 months, Lieb et al [ 14 ] found that trends in distress and anxiety and depression symptoms did not differ between survivors with good and poor prognostic outcomes or those who declined testing. However, only 63 survivors accepted testing.…”

Section: Introductionmentioning

confidence: 99%

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

et al. 2021

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Purpose Prognostication in cancer is growing in importance as increasingly accurate tools are developed. Prognostic accuracy intensifies ethical concerns that a poor prognosis could be psychologically harmful to survivors. Uveal melanoma (UM) prognostication allows survivors to be reliably told that life expectancy is either normal (good prognosis) or severely curtailed because of metastatic disease (poor prognosis). Treatment cannot change life expectancy. To identify whether prognosis is associated with psychological harm, we compared harm in UM survivors with good and poor prognoses and those who declined testing and compared these outcomes to general population norms. Methods Non-randomized 5-year study of a consecutive series of 708 UM survivors (51.6% male, mean age 69.03, SD=12.12) with observations at 6, 12, 24, 36, 48 and 60 months. We operationalized psychological harm as anxiety and depression symptoms, worry about cancer recurrence (WREC) and poor quality of life (QoL). Results Compared to other groups, survivors with poor prognoses showed initially elevated anxiety and depression and consistently elevated worry about local or distant recurrence over 5 years. Good prognoses were not associated with outcomes. Generally, no prognostic groups reported anxiety, depression and WREC or QoL scores that exceeded general population norms. Conclusions Using a large sample, we found that harm accruing from a poor prognosis was statistically significant over 5 years, but did not exceed general non-cancer population norms. Implications for Cancer Survivors Survivors desire prognostic information. At a population level, we do not believe that our findings show sufficiently strong links between prognostication outcome and psychological harm to deny patients the option of knowing their prognosis. Nonetheless, it is important that patients are informed of potential adverse psychological consequences of a poor prognosis.

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Section: Discussionmentioning

confidence: 97%

Section: Introductionmentioning

confidence: 99%

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

et al. 2021

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“…Knowing their fate could have signi cant implications for patients in terms of their psychological state and future life planning [8][9][10]. Some authors state that this information could be burdensome to patients and may be re ected in higher scores for depression, higher distress, and lower quality of life in patients with monosomy 3, as reported by Hope-Stones et al and Reimer et al [11,9,12].…”

Section: Introductionmentioning

confidence: 99%

“…Other studies have found the test results to have no or little impact on anxiety and depression, and largely show mental QOL comparable to that of an agematched healthy norm population [8,13]. Lieb et al prospectively investigated 63 patients opting for CGT and showed that the perceived risk of developing metastasis increased in patients after receiving a poor prognosis and decreased in patients with good prognosis [10]. However, the same study observed that anxiety, depression, general distress, and fear of progression declined equally in all patients after primary treatment, regardless of their prognosis or their decision about undergoing CGT.…”

Section: Introductionmentioning

confidence: 99%

“…To date, little is known about patients' motivation for testing and how patients re ect on their decision. Arguments advocating for CGT in uveal melanoma include a more pronounced sense of control, autonomy, hopefulness, and better life planning [14,9,13,10]. However, Deber and colleagues showed that most patients prefer a more passive role and show little strive for autonomy in the decision-making process [15].…”

Section: Introductionmentioning

confidence: 99%

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Fear of Prognosis? How Anxiety, Coping, and Expected Burden Impact the Decision to Have Cytogenetic Assessment in Uveal Melanoma Patients

Gollrad

Korpusik

Rabsahl

et al. 2021

Preprint

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BackgroundCytogenetic testing (CGT) in uveal melanoma patients reveals prognostic information about the individual risk of developing distant metastasis with dismal prognosis. There is currently no medical intervention strategy with proven effect on the prognosis, rendering the result of the cytogenetic testing purely informative. We explored patients’ socio-demographic backgrounds, psychological preconditions, coping strategies, external influences, and concerns about “knowing their fate” to study their possible interactions with decision-making for CGT.MethodsUveal melanoma patients were asked to complete questionnaires on their interest in undergoing CGT for prognostication and the factors influencing their decision. Data were collected on socio-demographics, baseline anxiety (GAD-7), depression (PHQ-9), coping strategies (Brief Cope), and assumed future concerns regarding the CGT result. Data were analyzed by using multiple ordinal logistic regression and exploring estimated marginal effects.ResultsQuestionnaires were returned by 121 of 131 (92.4%) patients. Fifty-two patients (43%) had no interest in CGT, 34 (28.1%) were undecided, and 35 (28.9%) were interested. We observed no significant differences regarding age, sex, partnership, education, occupation, baseline anxiety, or depression. Decision-making favoring CGT was influenced by the treating physicians, internet resources, and level of baseline anxiety. Patients were likely to reject CGT when they worried that “knowing the result will have an unintended influence” on their life.ConclusionDecision-making about CGT for prognostication in uveal melanoma is burdensome to many patients and in general not guided by medical advice regarding further treatment and screening procedures. The psychological impact of the decision is therefore unique and requires careful support by psycho-oncologists considering the patient’s fears and expectations.

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Attitudes of patients with cutaneous melanoma toward prognostic testing using the 31‐gene expression profile test

Ahmed¹,

Siegel²,

Morgan‐Linnell³

et al. 2022

Cancer Medicine

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Objective Although most patients diagnosed with early‐stage cutaneous melanoma (CM) have excellent outcomes, because of the large number diagnosed each year, many will experience recurrence or death. Prognostic testing for CM using the 31‐gene expression profile (31‐GEP) test can benefit patients by helping guide risk‐appropriate treatment and surveillance plans. We sought to evaluate patients' attitudes toward prognostic testing with the 31‐GEP and assess whether patients experience decision regret about having 31‐GEP testing. Methods A 43‐question survey was distributed by the Melanoma Research Foundation in June–August 2021 to CM patients enrolled in their database. Patients were asked questions regarding their decision to undergo 31‐GEP testing and the extent to which they experienced decision regret using a validated set of Decision Regret Scale questions. Results We analyzed responses from patients diagnosed in 2014 or later (n = 120). Of these, 28 had received 31‐GEP testing. Most respondents (n = 108, 90%) desired prognostic information when diagnosed. Of those who received 31‐GEP testing, most felt the results were useful (n = 22 out of 24) and had regret scores significantly less than neutral regret, regardless of their test results (Class 1: p < 0.001; Class 2: p = 0.036). Further, decision regret scores were not significantly different between patients who received a Class 1 31‐GEP result and those who received a Class 2 result (mean Class 1 = 1.39 and mean Class 2 = 1.90, p = 0.058). Conclusions Most newly diagnosed CM patients desired prognostic information about their tumors. Patients who received 31‐GEP testing felt it was useful and did not regret their decision to undergo 31‐GEP testing.

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Psychosocial impact of prognostic genetic testing in uveal melanoma patients: a controlled prospective clinical observational study

Cited by 14 publications

References 46 publications

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

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

Fear of Prognosis? How Anxiety, Coping, and Expected Burden Impact the Decision to Have Cytogenetic Assessment in Uveal Melanoma Patients

Attitudes of patients with cutaneous melanoma toward prognostic testing using the 31‐gene expression profile test

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