Patient and Caregiver Experiences of Participating in Parkinson's Disease Clinical Trials: A Systematic Review of Qualitative Studies

TY - JOUR

T1 - Patient and Caregiver Experiences of Participating in Parkinson's Disease Clinical Trials

T2 - A Systematic Review of Qualitative Studies

AU - Gorzynska, Olivia

AU - McGoohan, Katie

AU - Velayudhan, Latha

N1 - Publisher Copyright: © The Author(s) 2021.

PY - 2022/5/1

Y1 - 2022/5/1

N2 - BACKGROUND: Older people experience multiple barriers to enrolment in clinical trials. Caregivers play an important role in supporting patients with Parkinson's disease. Understanding the experiences of patients and caregivers who participate in trials is important to inform the design of future studies and identify problems with recruitment and retention.OBJECTIVE: To systematically review and synthesize qualitative studies exploring the experiences of participating in clinical trials from the perspectives of patients with Parkinson's disease and their caregivers.METHODS: Two reviewers independently searched the following databases: MEDLINE, Embase, PsycInfo, Cochrane, and CINAHL. The reference lists of all selected papers were screened for additional studies. Articles meeting predefined eligibility criteria were included in the synthesis. Methodological quality of each study was assessed using the Critical Appraisal Skills Programme (CASP) Qualitative Checklist. Included study findings were synthesized using the principles of thematic analysis.RESULTS: Eleven studies were included. Five key themes were identified: positive experiences of participating in research, assessment completion, motivators, enablers, and barriers. Positive experiences of participating in studies were linked to social interaction with other patients, building trust with the researchers, and expertise of the research team.CONCLUSIONS: This review supports literature highlighting the important role of caregivers in supporting patients with Parkinson's disease. Future studies are needed to further examine their perspectives on participating in research.

AB - BACKGROUND: Older people experience multiple barriers to enrolment in clinical trials. Caregivers play an important role in supporting patients with Parkinson's disease. Understanding the experiences of patients and caregivers who participate in trials is important to inform the design of future studies and identify problems with recruitment and retention.OBJECTIVE: To systematically review and synthesize qualitative studies exploring the experiences of participating in clinical trials from the perspectives of patients with Parkinson's disease and their caregivers.METHODS: Two reviewers independently searched the following databases: MEDLINE, Embase, PsycInfo, Cochrane, and CINAHL. The reference lists of all selected papers were screened for additional studies. Articles meeting predefined eligibility criteria were included in the synthesis. Methodological quality of each study was assessed using the Critical Appraisal Skills Programme (CASP) Qualitative Checklist. Included study findings were synthesized using the principles of thematic analysis.RESULTS: Eleven studies were included. Five key themes were identified: positive experiences of participating in research, assessment completion, motivators, enablers, and barriers. Positive experiences of participating in studies were linked to social interaction with other patients, building trust with the researchers, and expertise of the research team.CONCLUSIONS: This review supports literature highlighting the important role of caregivers in supporting patients with Parkinson's disease. Future studies are needed to further examine their perspectives on participating in research.

KW - Caregivers

KW - Clinical trials

KW - Parkinson’s disease

KW - Qualitative studies

KW - Systematic review

UR - http://www.scopus.com/inward/record.url?scp=85129345432&partnerID=8YFLogxK

U2 - 10.1093/arclin/acab083

DO - 10.1093/arclin/acab083

M3 - Article

C2 - 34673913

SN - 0887-6177

VL - 37

SP - 654

EP - 676

JO - Archives of Clinical Neuropsychology

JF - Archives of Clinical Neuropsychology

IS - 3

ER -