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Open Access 01-12-2019 | Research article

A systematic literature review of the assessment of treatment burden experienced by patients and their caregivers

Authors: Orla C. Sheehan, Bruce Leff, Christine S. Ritchie, Sarah K. Garrigues, Lingsheng Li, Debra Saliba, Roya Fathi, Cynthia M. Boyd

Published in: BMC Geriatrics | Issue 1/2019

Abstract

Background

Many older adults with multiple chronic conditions, particularly those who are functionally impaired, spend considerable time juggling the competing demands of managing their conditions often assisted by caregivers. We examined methods of assessing the treatment burden experienced by this population as a first step to identifying strategies to reduce it.

Methods

Systematic searches were performed of the peer-reviewed and grey-literature (PubMed, Cochrane library, CINAHL, EMBASE, Web of Science, SCOPUS, New York Academy of Medicine Grey Literature Review, NLM catalog and ProQuest Digital Theses and Dissertations). After title and abstract screening, both qualitative and quantitative articles describing approaches to assessment of treatment burden were included.

Results

Forty-five articles from the peer reviewed and three items from the grey literature were identified. Most articles (34/48) discussed treatment burden associated with a specific condition. All but one examined the treatment burden experienced by patients and six addressed the treatment burden experienced by caregivers. Qualitative studies revealed many aspects of treatment burden including the burdens of understanding the condition, juggling, monitoring and adjusting treatments, efforts to engage with others for support as well as financial and time burdens. Many tools to assess treatment burden in different populations were identified through the qualitative data. The most commonly used instrument was the Treatment Burden Questionnaire.

Conclusions

Many instruments are available to assess treatment burden, but no one standardized assessment method was identified. Few articles examined approaches to measuring the treatment burden experienced by caregivers. As people live longer with more chronic conditions healthcare providers need to identify patients and caregivers burdened by treatment and engage in approaches to ameliorate treatment burden. A standard and validated assessment method to measure treatment burden in the clinical setting would help to enhance the care of people with multiple chronic conditions, allow comparison of different approaches to reducing treatment burden, and foster ongoing evaluation and monitoring of burden across conditions, patient populations, and time.

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Title: A systematic literature review of the assessment of treatment burden experienced by patients and their caregivers
Authors: Orla C. Sheehan
Bruce Leff
Christine S. Ritchie
Sarah K. Garrigues
Lingsheng Li
Debra Saliba
Roya Fathi
Cynthia M. Boyd
Publication date: 01-12-2019
Publisher: BioMed Central
Published in: BMC Geriatrics / Issue 1/2019
Electronic ISSN: 1471-2318
DOI: https://doi.org/10.1186/s12877-019-1222-z

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