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Does outpatient palliative care improve patient-centered outcomes in Parkinson's disease: Rationale, design, and implementation of a pragmatic comparative effectiveness trial.

Abstract：

:Patients with Parkinson's disease and related disorders (PDRD) and their families have considerable unmet needs including non-motor symptom management, caregiver support, spiritual wellbeing, advance care planning, and end-of-life care. There is increasing interest in applying palliative care (PC) models to better meet these needs. While PC has been shown to improve care and quality of life (QOL) for people with cancer and heart failure, few studies have evaluated the role of PC for people with PDRD. Well-designed clinical trials are needed to optimize the PC approach for PDRD and to influence policy and implementation efforts. We initiated a randomized multicenter comparative effectiveness trial of team-based outpatient PC versus usual care for people with PDRD and their caregivers. The primary aims of this study are to determine the effects of PC on patient QOL and caregiver burden. Qualitative interviews will be utilized to gain additional insights into the impact of PC on participants, the outcomes that matter most to this population, and to find opportunities to refine future interventions and trials. As a novel application of PC, challenges involved in the design of this study include choosing appropriate inclusion criteria, standardizing the intervention, defining usual care, and choosing outcome measures suitable to our research questions. Challenges involved in implementation include participant recruitment, retention, and management of participant burden. We anticipate the results of this trial will have relevance for both clinical care and future clinical research trial design in evaluating models of PC for people with PDRD and other serious illnesses.

journal_name

Contemp Clin Trials

journal_title

Contemporary clinical trials

authors

Kluger BM,Katz M,Galifianakis N,Pantilat SZ,Kutner JS,Sillau S,Gritz M,Jones J,Fairclough D,Sumrall M,Hall K,Miyasaki J

doi

10.1016/j.cct.2019.02.005

subject

Has Abstract

pub_date

2019-04-01 00:00:00

pages

28-36

eissn

1551-7144

issn

1559-2030

pii

S1551-7144(18)30476-2

journal_volume

pub_type

杂志文章,多中心研究,随机对照试验

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Does outpatient palliative care improve patient-centered outcomes in Parkinson's disease: Rationale, design, and implementation of a pragmatic comparative effectiveness trial.