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<p>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 &amp; 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 (<i>P</i> = 0.77). Caregivers in the intervention group reported improved quality of life at six months (<i>P</i> = 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.</p>

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Advance care planning and care coordination for people with parkinsonism: a randomized controlled trial

  • 期刊论文

  • 出版模式：

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  • 发表日期：

    2026年7月25日

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  • Bauke W. Dijkstra,
  • Catharina Muente,
  • Michela Garon,
  • Kristina Rosqvist,
  • Monica Scharfenort,
  • Katharina M. Lex,
  • Laura E. Grover,
  • Eirini Nixina,
  • Pille Taba,
  • Ülle Krikmann,
  • Katrin Sikk,
  • Anette E. Schrag,
  • Philip Poku,
  • Spyridon Konitsiotis,
  • Miltiadis Makrydimas,
  • Stefan Lorenzl,
  • Per Odin,
  • David J. Pedrosa,
  • Kris C. P. Vissers,
  • Marieke M. Groot,
  • Bastiaan R. Bloem,
  • Marjan J. Meinders,
  • Angelo Antonini,
  • Ewald Bronkhorst,
  • K. Ray Chaudhuri,
  • Dimitrios Fotiadis,
  • Dimitri Gatsios,
  • Nikolaos Moschos,
  • Piret Paal,
  • Stefanie Spriewald,
  • Dhaval Trivedi,
  • Argyri Tsakanika,
  • Maria Widritzki

摘要

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.