Abstract
BackgroundMany 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.MethodsSystematic 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.ResultsForty-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.ConclusionsMany 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.
Highlights
Many older adults with multiple chronic conditions, those who are functionally impaired, spend considerable time juggling the competing demands of managing their conditions often assisted by caregivers
Population and study setting Thirty-four of the 48 articles (70.8%) discussed treatment burden associated with specific conditions e.g. heart failure, cancer, cystic fibrosis with the remaining fourteen articles focusing on patients with multiple
Qualitative studies of assessment of treatment burden Articles using qualitative analyses of focus group or semistructured interview data identified the main dimensions of treatment burden experienced by patients [4, 17,18,19,20,21,22], factors which increase burden [19, 20] and methods by which patients decrease burden [20, 23]
Summary
Many older adults with multiple chronic conditions, those who are functionally impaired, spend considerable time juggling the competing demands of managing their conditions often assisted by caregivers. As the complexity and choice of treatments have grown, many patients and their families struggle to manage the responsibilities and burdens that come with managing multiple chronic conditions. The burden of taking multiple oral medications may be accepted, but the challenge of selfadministering injections may be too great to overcome [5]. Many tasks on their own appear simple –such as taking new medications, organizing and undergoing tests, and making lifestyle changes. Too often providers do not recognize the burdens experienced by patients and caregivers and this lack of recognition can contribute to the difficulties of patients to adhere to the provider recommended management of their condition [9]
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