Category: Palliative Care
Objective: To investigate an Advance Care Planning (ACP) and care coordination intervention from the perspective of people with Parkinson’s disease (PwPD) and their family caregivers (FCs).
Background: ACP is a process that should help individuals understand and communicate their personal values, life goals and preferences regarding future care. In recent years, ACP has become more and more common. Nevertheless, little is known about ACP and the impact on PwPD in the late stage of the disease and their FCs.
Method: In the PD_Pal study, a nurse-led ACP and care coordination intervention for PwPD and their FCs was performed in seven European countries (Austria, Estonia, Germany, Greece, Italy, Sweden and the United Kingdom) and evaluated in a randomized controlled trial. At its core, the intervention consisted of several meetings of a specially trained nurse with PwPD and their FCs to discuss ACP and to support care coordination, tailored to the individual needs. To understand the effects, qualitative, semi-structured interviews were conducted after the intervention with PwPD (n=39) and their FCs (n=30).
Results: The PwPD and FCs felt seen and heard in their concerns and needs through the emotional support of the nurse. In addition, the practical support by the nurse, e.g., by disseminating information about regional health care structures, was mentioned as a positive effect. At the same time, the discussion of end-of-life issues caused emotional burden for some participants. It also became apparent that it was important for many PwPD to receive more information about Parkinson’s disease, care structures and coping strategies and that an exchange with other people affected was desired.
Conclusion: In order to provide comprehensive support to PwPD and their FCs, it is important that in addition to ACP, care coordination and information on regional care structures are provided. There should also be the possibility to exchange experiences with other PwPD. The basis for these care elements is a personal and emotional support of the PwPD and their FCs.
To cite this abstract in AMA style:
C. Muente, BW. Dijkstra, CM. Groot, MJ. Meinders. Effects of a nurse-led Advance Care Planning and Care Coordination intervention in Parkinson’s Disease – patient and family caregiver perspectives from a multicentre European study [abstract]. Mov Disord. 2023; 38 (suppl 1). https://www.mdsabstracts.org/abstract/effects-of-a-nurse-led-advance-care-planning-and-care-coordination-intervention-in-parkinsons-disease-patient-and-family-caregiver-perspectives-from-a-multicentre-european-study/. Accessed June 15, 2025.« Back to 2023 International Congress
MDS Abstracts - https://www.mdsabstracts.org/abstract/effects-of-a-nurse-led-advance-care-planning-and-care-coordination-intervention-in-parkinsons-disease-patient-and-family-caregiver-perspectives-from-a-multicentre-european-study/