Advance care planning and care coordination for people with parkinsonism: a randomized controlled trial
Abstract Parkinsonism comprises a group of progressive neurodegenerative disorders, including Parkinson’s disease and atypical parkinsonism. In advanced stages, advance care planning (ACP) and coordinated care are important to align treatment with patients’ values and reduce unwanted interventions and caregiver burden. In this study we evaluated whether a nurse-led intervention increases documentation of end-of-life preferences and improves patient and caregiver outcomes. In this multicentre, single-blind randomized controlled trial (2020–2022), participants with parkinsonism (Hoehn & Yahr stage ≥3) and their caregivers were included across seven neurology centres in Austria, Estonia, Germany, Greece, Italy, Sweden, and the UK. Participants were randomized 1:1 to either the PD_Pal intervention (a structured six-month nurse-led ACP and care coordination program) or usual care. The primary outcome was documentation of end-of-life preferences at six months. A total of 189 people with parkinsonism and 189 family caregivers were enrolled. No significant difference was found in documentation of end-of-life preferences between groups ( P = 0.77). Caregivers in the intervention group reported improved quality of life at six months ( P = 0.03), although this effect was not sustained at 12 months. No differences were observed in other outcomes. These findings highlight challenges in implementing ACP in advanced parkinsonism and the need for flexible, stage-appropriate strategies.
Authors
- Maria Widritzki
- Ülle Krikmann
- Marieke M. Groot (ORCID: https://orcid.org/0000-0002-5740-3607)
- Kristina Rosqvist (ORCID: https://orcid.org/0000-0002-3861-8012)
- Spyridon Konitsiotis (ORCID: https://orcid.org/0000-0002-5217-1317)
- Monica Scharfenort (ORCID: https://orcid.org/0000-0003-4415-1428)
- Dhaval Trivedi (ORCID: https://orcid.org/0000-0003-2319-8024)
- Michela Garon (ORCID: https://orcid.org/0000-0003-4945-5498)
- Angelo Antonini (ORCID: https://orcid.org/0000-0003-1040-2807)
- Katrin Sikk (ORCID: https://orcid.org/0000-0003-0470-1122)
- Catharina Muente (ORCID: https://orcid.org/0000-0002-3640-4010)
- Marjan J. Meinders (ORCID: https://orcid.org/0000-0001-6491-7035)
- Anette E. Schrag (ORCID: https://orcid.org/0000-0002-9872-6680)
- Stefan Lorenzl (ORCID: https://orcid.org/0000-0002-1165-0821)
- Stefanie Spriewald
- Piret Paal (ORCID: https://orcid.org/0000-0002-1341-3248)
- Argyri Tsakanika
- Miltiadis Makrydimas
- Philip Poku
- Eirini Nixina
- David J. Pedrosa
- Bauke W. Dijkstra
- Nikolaos Moschos
- Kris C. P. Vissers
- Laura E. Grover
- K. Ray Chaudhuri
- Katharina M. Lex
- Bastiaan R. Bloem
- Per Odin
- Pille Taba
- Dimitri Gatsios
- Ewald Bronkhorst
- Dimitrios Fotiadis
Institutions
- University of Padua (IT)
- Radboud University Nijmegen (NL)
- Philipps University of Marburg (DE)
- King's College London (GB)
- Lund University (SE)
- University of Ioannina (GR)
- Paracelsus Medical University (AT)
- Tartu University Hospital (EE)
- Radboud University Medical Center (NL)
- Medizinische Hochschule Hannover (DE)
- North Estonia Medical Centre (EE)
- Neuroscience Institute (IT)
- IRCCS San Camillo Hospital (IT)
- Skåne University Hospital (SE)
- National Hospital for Neurology and Neurosurgery (GB)
- King's College Hospital (GB)
- University College London (GB)
- University of Tartu (EE)
- Rotterdam University of Applied Sciences (NL)
Publication Details
- Journal
- npj Parkinson s Disease
- Published
- 2026-07-25
- DOI
- https://doi.org/10.1038/s41531-026-01493-7
- Primary Topic
- Parkinson's Disease Mechanisms and Treatments
- Type
- article
- Field-Weighted Citation Impact
- 0.00
Funders
- European Commission
- Radboud Universitair Medisch Centrum