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The Experiences of Treatment Burden in People with Parkinson's Disease and Their Caregivers: A Systematic Review of Qualitative Studies

The Experiences of Treatment Burden in People with Parkinson's Disease and Their Caregivers: A Systematic Review of Qualitative Studies
The Experiences of Treatment Burden in People with Parkinson's Disease and Their Caregivers: A Systematic Review of Qualitative Studies

Background High treatment burden is associated with poor adherence, wasted resources, poor quality of life and poor health outcomes. Identifying factors that impact treatment burden in Parkinson's disease can offer insights into strategies to mitigate them. Objective To explore the experiences of treatment burden among people with Parkinson's disease (PwP) and their caregivers. Methods A systematic review of studies published from year 2006 was conducted. Qualitative and mixed-method studies with a qualitative component that relate to usual care in Parkinson's disease were included. Quantitative studies and grey literature were excluded. Data synthesis was conducted using framework synthesis. Results 1757 articles were screened, and 39 articles included. Understanding treatment burden in PwP and caregivers was not the primary aim in any of the included studies. The main issues of treatment burden in Parkinson's disease are: 1) work and challenges of taking medication; 2) healthcare provider obstacles including lack of patient-centered care, poor patient-provider relationships, lack of care coordination, inflexible organizational structures, lack of access to services and issues in care home or hospital settings; and 3) learning about health and challenges with information provision. The treatment burden led to physical and mental exhaustion of self-care and limitations on the role and social activities of PwP and caregivers. Conclusion: There are potential strategies to improve the treatment burden in Parkinson's disease at an individual level such as patient-centered approach to care, and at system level by improving access and care coordination between services. Future research is needed to determine the modifiable factors of treatment burden in Parkinson's disease.

Parkinson's disease, Treatment burden, burden of treatment, caregivers, experience, qualitative, review
1877-7171
1597-1617
Tan, Qian Yue
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Cox, Natalie, Jayne
b59c2eb7-cfb2-4b2d-88cf-314240ddc557
Lim, Stephen
dd2bfbd7-7f74-4365-b77e-9989f6408ddc
Coutts, Laura
2736f147-abdd-40e5-8393-b7b27fc0ca52
Fraser, Simon
135884b6-8737-4e8a-a98c-5d803ac7a2dc
Roberts, Helen
5ea688b1-ef7a-4173-9da0-26290e18f253
Ibrahim, Kinda
54f027ad-0599-4dd4-bdbf-b9307841a294
Tan, Qian Yue
6a31c582-c5f8-4d80-b466-b27da2700069
Cox, Natalie, Jayne
b59c2eb7-cfb2-4b2d-88cf-314240ddc557
Lim, Stephen
dd2bfbd7-7f74-4365-b77e-9989f6408ddc
Coutts, Laura
2736f147-abdd-40e5-8393-b7b27fc0ca52
Fraser, Simon
135884b6-8737-4e8a-a98c-5d803ac7a2dc
Roberts, Helen
5ea688b1-ef7a-4173-9da0-26290e18f253
Ibrahim, Kinda
54f027ad-0599-4dd4-bdbf-b9307841a294

Tan, Qian Yue, Cox, Natalie, Jayne, Lim, Stephen, Coutts, Laura, Fraser, Simon, Roberts, Helen and Ibrahim, Kinda (2021) The Experiences of Treatment Burden in People with Parkinson's Disease and Their Caregivers: A Systematic Review of Qualitative Studies. Journal of Parkinson's Disease, 11 (4), 1597-1617. (doi:10.3233/JPD-212612).

Record type: Article

Abstract

Background High treatment burden is associated with poor adherence, wasted resources, poor quality of life and poor health outcomes. Identifying factors that impact treatment burden in Parkinson's disease can offer insights into strategies to mitigate them. Objective To explore the experiences of treatment burden among people with Parkinson's disease (PwP) and their caregivers. Methods A systematic review of studies published from year 2006 was conducted. Qualitative and mixed-method studies with a qualitative component that relate to usual care in Parkinson's disease were included. Quantitative studies and grey literature were excluded. Data synthesis was conducted using framework synthesis. Results 1757 articles were screened, and 39 articles included. Understanding treatment burden in PwP and caregivers was not the primary aim in any of the included studies. The main issues of treatment burden in Parkinson's disease are: 1) work and challenges of taking medication; 2) healthcare provider obstacles including lack of patient-centered care, poor patient-provider relationships, lack of care coordination, inflexible organizational structures, lack of access to services and issues in care home or hospital settings; and 3) learning about health and challenges with information provision. The treatment burden led to physical and mental exhaustion of self-care and limitations on the role and social activities of PwP and caregivers. Conclusion: There are potential strategies to improve the treatment burden in Parkinson's disease at an individual level such as patient-centered approach to care, and at system level by improving access and care coordination between services. Future research is needed to determine the modifiable factors of treatment burden in Parkinson's disease.

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JPD212612 published article - Accepted Manuscript
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Accepted/In Press date: 6 July 2021
Published date: 12 October 2021
Additional Information: Funding Information: QYT and LC were also supported by the University of Southampton National Institute for Health Research (NIHR) Academic Clinical Fellow training programme. SERL was supported by the University of Southampton NIHR Academic Clinical Lecturer programme. QYT, SERL, SF, HCR and KI are supported by the NIHR Applied Research Collaboration Wessex; and NJC, HCR and KI by the NIHR Southampton Biomedical Research Centre. The views expressed are those of the authors and not necessarily those of the National Health Service, the NIHR or the Department of Health and Social Care. Publisher Copyright: © 2021 - IOS Press. All rights reserved. Copyright: Copyright 2021 Elsevier B.V., All rights reserved.
Keywords: Parkinson's disease, Treatment burden, burden of treatment, caregivers, experience, qualitative, review

Identifiers

Local EPrints ID: 450275
URI: http://eprints.soton.ac.uk/id/eprint/450275
ISSN: 1877-7171
PURE UUID: 44f86688-4f25-4fd4-adba-f35ddc72cf88
ORCID for Natalie, Jayne Cox: ORCID iD orcid.org/0000-0002-4297-1206
ORCID for Stephen Lim: ORCID iD orcid.org/0000-0003-2496-2362
ORCID for Simon Fraser: ORCID iD orcid.org/0000-0002-4172-4406
ORCID for Helen Roberts: ORCID iD orcid.org/0000-0002-5291-1880
ORCID for Kinda Ibrahim: ORCID iD orcid.org/0000-0001-5709-3867

Catalogue record

Date deposited: 20 Jul 2021 16:31
Last modified: 09 Jan 2022 04:07

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Contributors

Author: Qian Yue Tan
Author: Natalie, Jayne Cox ORCID iD
Author: Stephen Lim ORCID iD
Author: Laura Coutts
Author: Simon Fraser ORCID iD
Author: Helen Roberts ORCID iD
Author: Kinda Ibrahim ORCID iD

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