A majority of patients with Parkinson disease (PD) report difficulties in achieving early detection of their disease, with many of these patients reporting receiving false diagnoses and having to undergo several consultations with various medical specialists before they can confirm their PD. This according to findings from a questionnaire published in Neurology.
Researchers from Germany recruited 121 patients with PD (median age, 69 years) from outpatient and inpatient clinics at the University of Kiel. An interdisciplinary team comprising experts in neurology, ethics, and neuropsychology designed a standardized questionnaire to evaluate the perception of participants on early PD diagnosis. The questionnaire was administered to 20 patients in the feasibility study and then again in 101 patients who received the final revised questionnaire.
The median disease duration in the patients with PD who participated in the study was 6 years, whereas the median reported duration between the onset of PD symptoms to diagnosis was 1.0 years. Approximately 32% of patients reported a time from symptoms onset to diagnosis of >2 years. Approximately 62% of patients stated that the duration between symptoms onset to diagnosis of PD was “burdensome.” Nearly 30% of these participants said this time was maximally burdensome, as assessed by strain rating on a Likert scale that ranged from 1 to 10.
Overall, the participants reported a median of 3 (range, 1-20) medical consultations until a diagnosis was confirmed. General practitioners made the tentative diagnosis of PD in 53% of patients, followed by neurologists in 39% of patients. Another 33% of patients reported they had received other diagnoses prior to a diagnosis of PD. Of these, 36% claimed they were treated according to their misdiagnosis. The most common misdiagnoses in this cohort included other neurologic diagnoses, psychiatric/psychological diagnoses, or orthopedic or internal diseases.
Up to 46% of participants said they would have wanted to know about their risk of PD, whereas 85% said they would have preferred to know their PD risk if their doctor would have provided instructions on lifestyle changes that could have benefited the disease course. Another 39% said they would have changed their lifestyle if they were aware of their risk of PD.
A limitation of this study was the questionnaire design, which included the reliance on participants’ memories and past perceptions of time.
Despite these findings, the researchers from this study noted there exists an ethical dilemma in telling patients about their potential risk of PD, particularly if the patients are not offered any supportive information that may mitigate risk. The study authors suggested that “communication of uncertainty and respecting the individual’s right not to know are major challenges and yet an important basis for patient involvement and empowerment” in relation to PD risk assessment and future care. They recommended additional efforts be made to “elucidate ethical implications of early detection in neurodegeneration.”
Disclosure: Several study authors declared affiliations with the pharmaceutical industry. Please see the original reference for a full list of authors’ disclosures.
Schaeffer E, Rogge A, Nieding K, et al. Patients’ views on the ethical challenges of early Parkinson disease detection. Neurology. 2020;94(19):e2037‐e2044.