Eva Schaeffer1, Annette Rogge2, Katharina Nieding2, Vera Helmker2, Christa Letsch2, Björn Hauptmann2, Daniela Berg2. 1. From the Department of Neurology (E.S., K.N., V.H., D.B.) and Institute of Experimental Medicine, Medical Ethics (A.R.), Christian-Albrechts-University of Kiel; Neurological Centre (C.L., B.H.), Hospital for Movement Disorders and Parkinson's Disease, Bad Segeberg; Department of Performance, Neuroscience, Therapy and Health (B.H.), MSH-Medical School Hamburg; Department of Neurodegeneration (D.B.), Hertie Institute for Clinical Brain Research, University of Tübingen, Germany. eva.schaeffer@uksh.de. 2. From the Department of Neurology (E.S., K.N., V.H., D.B.) and Institute of Experimental Medicine, Medical Ethics (A.R.), Christian-Albrechts-University of Kiel; Neurological Centre (C.L., B.H.), Hospital for Movement Disorders and Parkinson's Disease, Bad Segeberg; Department of Performance, Neuroscience, Therapy and Health (B.H.), MSH-Medical School Hamburg; Department of Neurodegeneration (D.B.), Hertie Institute for Clinical Brain Research, University of Tübingen, Germany.
Abstract
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.
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.
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