Analysis of Parkinson’s Disease Outpatient Counselling for Advance Directive Creation: A Cross-Sectional Questionnaire-Based Survey of German General Practitioners and Neurologists

Abstract

A major proportion of people with Parkinson’s disease (PwP) in Germany has written an advance directive (AD). Unfortunately, these ADs are unclear for PD-specific endpoints. We previously established consensus-based recommendations for disease-specific content of an AD in PwP. However, the implementation of those recommendations and the consulting of AD creation and modification in PwP remains to be evaluated. This study aimed to investigate the practical use of PD-specific recommendations for ADs in outpatient settings. A total of 87 physicians (45 general practitioners (GPs) and 42 neurologists, 10% response rate) answered a self-constructed semiquantitative questionnaire. The participants were asked to evaluate the suggested PD-specific recommendations for ADs and the supply of palliative care in the outpatient setting. Overall, the vast majority of treating physicians agreed on the usefulness of the newly constructed PD-specific recommendations. Consultations to discuss information about PD-specific ADs were scarce with short durations. Only 24% of participating physicians implemented the PD-specific recommendations in their daily practice. GPs and neurologists agreed on the benefit of disease-specific recommendations for ADs. In future, a more general integration of these recommendations in routine care might improve specific AD creation of PwP and advanced care planning.

Migraine and Hormonal Contraception in Gynecological Outpatient Care—Cross-Sectional Study among Practicing Gynecologists in Germany

“…Despite comparable response rates in other surveys within the German outpatients setting [ 24 , 25 ], a limitation of the present study is the overall low response rate of 7.2%. Considering this low response rate, our results must be interpreted with caution when transferred to the entirety of practicing gynecologists in Germany.…”

A systematic practice review: Providing palliative care for people with Parkinson’s disease and their caregivers

“…34 Advance care planning discussions should be made with the neurologist or primary care physician, 34 and supplemented with disease-specific aspects. 27,35 Involving the family in the discussion is desired by many patients, 36 but based on the experience of experts from the PD_PAL consortium, other patients do not want to burden their close ones. The patient must be ready for it, which can depend on age, personality and stage of disease: patients can be more prone to discuss those aspects when the illness course has severely affected their lives.…”

Disease modification in Parkinsonism: obstacles and ways forward

“…In a consensus-based Delphi panel of German palliative care and PD experts, disease specific recommendations for specific advance directives for people with PD have been developed (Klietz et al 2020a ). One explanation for the low-grade implementation of palliative care interventions in PD patients may be the low level of palliative care training in neurologists compared to general practitioners (Jensen et al 2022 ). Cooperation between neurologists and palliative care specialists mainly focuses on patients with brain tumors and amyotrophic lateral sclerosis.…”