RT Journal Article
SR Electronic
T1 Patients' views on the ethical challenges of early Parkinson disease detection
JF Neurology
JO Neurology
FD Lippincott Williams & Wilkins
SP e2037
OP e2044
DO 10.1212/WNL.0000000000009400
VO 94
IS 19
A1 Schaeffer, Eva
A1 Rogge, Annette
A1 Nieding, Katharina
A1 Helmker, Vera
A1 Letsch, Christa
A1 Hauptmann, Björn
A1 Berg, Daniela
YR 2020
UL http://n.neurology.org/content/94/19/e2037.abstract
AB Objective To evaluate the point of view of patients with Parkinson disease (PD) on early detection and risk disclosure in the prodromal phase of PD and to derive recommendations for an ethical framework for the recruitment of prodromal PD cohorts.Methods A standardized questionnaire to evaluate the patients' perception on early diagnosis in PD was designed by an interdisciplinary study group. After testing in a preliminary feasibility study (n = 20), the survey was performed retrospectively with patients from our clinic.Results A total of 101 patients with PD answered the questions. The majority of patients reported that time from onset of motor symptoms to diagnosis was burdensome, including false diagnoses and many consultations of various medical specialists. However, most of the patients evaluated early risk disclosure with skepticism. Freedom of choice and the potential of changes in lifestyle were rated as important.Conclusion Although patients with PD reported the time to diagnosis retrospectively as burdensome, the majority was skeptical regarding early disclosure of risk, especially with regard to the lack of pharmacologic options. Circumstances under which early detection and disclosure would have been approved by the majority of patients were (1) advice on lifestyle changes (exercise, nutrition) as potentially disease course–modifying therapy; (2) the establishment of an early diagnosis “culture,” including early clarification of the patients' wish to know; and (3) regular support and follow-up of individuals after risk disclosure.BDI=Beck Depression Inventory; GP=general practitioner; MDS-UPDRS=Movement Disorder Society Unified Parkinson's Disease Rating Scale; MoCA=Montreal Cognitive Assessment; PD=Parkinson disease; PDQ-39=Parkinson's Disease Questionnaire; RBD=REM sleep behavior disorder