Does outpatient palliative care improve patient-centered outcomes in Parkinson's disease: Rationale, design, and implementation of a pragmatic comparative effectiveness trial
| Autor: | Stefan Sillau, Steven Z. Pantilat, Diane L. Fairclough, Jacqueline Jones, Janis M. Miyasaki, Jean S. Kutner, Kirk Hall, Benzi M. Kluger, Mark Gritz, Malenna Sumrall, Nicholas B. Galifianakis, Maya Katz |
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| Rok vydání: | 2018 |
| Předmět: |
Advance care planning
Comparative Effectiveness Research Palliative care Population law.invention Interviews as Topic 03 medical and health sciences 0302 clinical medicine Quality of life (healthcare) Nursing Randomized controlled trial Parkinsonian Disorders law Patient-Centered Care Adaptation Psychological Ambulatory Care Medicine Humans Pharmacology (medical) 030212 general & internal medicine education Patient Care Team education.field_of_study 030505 public health business.industry Patient-centered outcomes Palliative Care Parkinson Disease General Medicine Caregiver burden Health Services Patient Acceptance of Health Care Clinical trial Caregivers Research Design Quality of Life 0305 other medical science business |
| Zdroj: | Contemporary clinical trials. 79 |
| ISSN: | 1559-2030 |
| Popis: | 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. |
| Databáze: | OpenAIRE |
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