Patients' views on the ethical challenges of early Parkinson disease detection

Schaeffer, Eva; Rogge, Annette; Nieding, Katharina; Helmker, Vera; Letsch, Christa; Hauptmann, Bjoern; Berg, Daniela

doi:10.1212/wnl.0000000000009400

Cited by 34 publications

(49 citation statements)

References 32 publications

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“…We identified 11 publications on ethical implications of prognostic counseling, including seven publications on RBD 4,5,[7][8][9][10][11] and four publications on PD in general. [19][20][21][22] Two studies used questionnaires addressing affected individuals: one study questioned first-degree relatives of PD patients 21 and one study sought the opinion of already affected PD patients. 19 The remaining studies included personal recommendations or experiences, partly in combination with (semi)structured literature research, 4,5,8,9,11,20,23 a retrospective analysis of medical records, 10 and an expert survey on RBD 7 (see Table 1).…”

Section: Literature Searchmentioning

confidence: 99%

Risk Disclosure in Prodromal Parkinson's Disease

et al. 2021

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A BS TRACT: Background: Impressive progress in the understanding of the prodromal phase of Parkinson's disease (PD) in recent years has enabled the generation of disease prediction models. However, a remaining diagnostic uncertainty and lack of therapeutic options for affected individuals has resulted in a variety of ethical issues that have not to date been addressed sufficiently. Moreover, differences in the specificity of prodromal symptoms and possible subtypes of PD, especially the presence of rapid eye movement (REM) sleep behavior disorder (RBD), may have an important impact on prognostic counseling. Objectives: To derive a guideline for risk disclosure in prodromal PD based on the current literature and expert opinion. Methods: We performed (1) a literature review on prognostic counseling in PD and (2) consulted with international experts on prodromal PD using a semi-structured questionnaire based on a Delphi approach to evaluate recommendations for risk disclosure in PD. Results:The literature research revealed only 11 publications addressing prognostic counseling, with only two studies directly addressing affected individuals and most studies focusing on risk disclosure in RBD. The expert survey revealed the importance of distinguishing between individuals with and without RBD in prognostic counseling. Conclusions: Based on the current literature and expert recommendations, a guideline for risk disclosure in prodromal PD for clinical care and research could be elaborated. Prognostic counseling should include differentiation between individuals with and without RBD, taking into account the high uncertainty of risk calculation in RBD-negative prodromal PD.

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Section: Literature Searchmentioning

confidence: 99%

Risk Disclosure in Prodromal Parkinson's Disease

et al. 2021

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“…28,31 Moreover, little is known about what patients with RBD prefer to know. 27,32 In a research setting, risk disclosure is even more challenging than in a clinical setting, as research participants may not be aware of or hindered by sleep complaints. Little is known about how previous polysomnography studies handled disclosure of RBD diagnosis or the concurrent risk of α-synucleinopathies to participants.…”

Section: Risk Disclosurementioning

confidence: 99%

“…[38][39][40] It is thus difficult to deduce from these diseases how individuals will experience risk disclosure of α-synucleinopathies. Although a recent study suggests that patients with Parkinson's disease are skeptical toward early risk disclosure, 32 the psychological impact of risk disclosure to patients or research participants with RBD remains unknown. Future quantitative and qualitative studies are necessary to fill these gaps.…”

Section: Key Remaining Gaps In Knowledgementioning

confidence: 99%

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Ethical Considerations in Screening for Rapid Eye Movement Sleep Behavior Disorder in the General Population

et al. 2020

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A BS TRACT: Clinical studies have shown that up to 90% of patients with idiopathic rapid eye movement sleep behavior disorder (RBD) will eventually be diagnosed with a clinical α-synucleinopathy. Because of this high conversion rate, screening for RBD is often performed to identify eligible participants for studies aimed at elucidating the prodromal phase of α-synucleinopathies. However, screening for RBD, especially in the general population, raises many ethical dilemmas. In light of the existing ethical literature and our experience in establishing a screening approach for RBD in the Rotterdam Study, we discuss ethical dilemmas when screening for RBD in population-based studies. We conclude that informing study participants about the reason for invitation and the possible trajectory that lies ahead when participating is essential. However, participants should not be troubled unnecessarily by giving them detailed information about possible diagnoses or associated disease risks.

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“…Whether an early diagnosis is preferable, i.e., timely, will depend on the individual [37]. In the absence of an effective treatment, however, the majority of patients with PD are sceptical about early risk disclosure [38]. People who received an increased AD risk status contemplated a change to their health behavior, living situation, or future plans more compared to those who did not, even though the validity of this risk status for future symptom development is still uncertain [39].…”

Section: What To Tell Research Participants?mentioning

confidence: 99%

Towards early disease modification of Parkinson’s disease: a review of lessons learned in the Alzheimer field

et al. 2020

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Parkinson's disease (PD) research is beginning to focus on early disease modification and prevention. The therapeutic pipeline includes a growing range of pharmacological interventions that could theoretically intervene with the underlying disease process. It is hoped that applying such interventions in a very early stage of the disease pathology, before the onset of motor symptoms or during its early stages, may prevent or delay further disease progression. To identify people in this early disease stage, criteria for 'prodromal PD' have been proposed-describing people with one or more specific features that jointly constitute a variably increased risk of developing clinically manifest PD. Here, we aim to draw lessons from the field of Alzheimer's research, which has followed a similar strategy over the last decade, including the expansion of the disease label to 'prodromal' stages. Importantly, none of the large and costly randomized-controlled trials aiming to slow down or prevent Alzheimer's dementia by targeting the alleged disease pathology, i.e., amyloid-β aggregation, resulted in detectable clinical effects. Lack of sufficiently robust phase 2 trial results before moving to phase 3 studies, suboptimal participant selection, insensitive outcomes, a too narrow target focus, and trial design flaws contributed to this disappointing outcome. We discuss the various similarities between these Alzheimer's and PD approaches, and review the design of prevention or early disease modification trials for both diseases including the potential for immunotherapy. Finally, we offer considerations to optimize the design of such trials in PD, benefiting from the lessons learned in Alzheimer's prevention research.

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Patients' views on the ethical challenges of early Parkinson disease detection

Cited by 34 publications

References 32 publications

Risk Disclosure in Prodromal Parkinson's Disease

Risk Disclosure in Prodromal Parkinson's Disease

Ethical Considerations in Screening for Rapid Eye Movement Sleep Behavior Disorder in the General Population

Towards early disease modification of Parkinson’s disease: a review of lessons learned in the Alzheimer field

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