A systematic review of patient-reported measures of burden of treatment in three chronic diseases

Abstract

BackgroundBurden of treatment refers to the workload of health care and its impact on patient functioning and well-being. There are a number of patient-reported measures that assess burden of treatment in single diseases or in specific treatment contexts. A review of such measures could help identify content for a general measure of treatment burden that could be used with patients dealing with multiple chronic conditions. We reviewed the content and psychometric properties of patient-reported measures that assess aspects of treatment burden in three chronic diseases, ie, diabetes, chronic kidney disease, and heart failure.MethodsWe searched Ovid MEDLINE, Ovid EMBASE, Ovid PsycINFO, and EBSCO CINAHL through November 2011. Abstracts were independently reviewed by two people, with disagreements adjudicated by a third person. Retrieved articles were reviewed to confirm relevance, with patient-reported measures scrutinized to determine consistency with the definition of burden of treatment. Descriptive information and psychometric properties were extracted.ResultsA total of 5686 abstracts were identified from the database searches. After abstract review, 359 full-text articles were retrieved, of which 76 met our inclusion criteria. An additional 22 articles were identified from the references of included articles. From the 98 studies, 57 patient-reported measures of treatment burden (full measures or components within measures) were identified. Most were multi-item scales (89%) and assessed treatment burden in diabetes (82%). Only 15 measures were developed using direct patient input and had demonstrable evidence of reliability, scale structure, and multiple forms of validity; six of these demonstrated evidence of sensitivity to change. We identified 12 content domains common across measures and disease types.ConclusionAvailable measures of treatment burden in single diseases can inform derivation of a patient-centered measure of the construct in patients with multiple chronic conditions. Patients should take part in developing the measure to ensure salience and relevance.

A Look at Person-Centered and Family-Centered Care Among Older Adults: Results from a National Survey

“…4,5,41 Findings from this study and others 6,44 suggest a role for family perspectives in the measurement of treatment burden and in discussions about prioritization of care. BBurden^as-sociated with undertaking health care management activities has been defined as a meaningful concept to both patients 7,14,16,44 and family caregivers. 6,45 At times, there may be a tradeoff between these perspectives.…”

“…Questions to assess health care decision-making preferences and treatment burden were developed based on existing literature, and were devised for broad population relevance and feasible administration within a national survey. This emphasis varies from the prevailing evidence base that has focused on decision-making preferences and experiences of care with a specific health condition, 13,22,38 clinical situation, 36,37 or medical encounter, 14,28 although measures to ascertain these constructs are evolving. 2,49,50 Study findings are limited to older adults' perspectives, and do not encompass perspectives of family members and close friends who may share or assume responsibility for management of health care activities.…”

“…8,9 The existing literature generally indicates that older adults prefer a passive role in health care decision-making [10][11][12] and portrays older adults as burdened by care. 13,14 However, prior studies have typically emphasized age-related differences, 10,11 or focused on targeted subgroups of older adults with low-literacy, poor health, or specific conditions. [12][13][14][15][16] Understanding what people view to be important and their experience of care is foundational in the measurement of person-centered and family-centered care.…”

“…13,14 However, prior studies have typically emphasized age-related differences, 10,11 or focused on targeted subgroups of older adults with low-literacy, poor health, or specific conditions. [12][13][14][15][16] Understanding what people view to be important and their experience of care is foundational in the measurement of person-centered and family-centered care. 2 Therefore, we designed a study to understand older adults' preferences for participating in health care decision-making and their experiences with care as measured by aspects of treatment burden associated with managing health.…”

Minimally disruptive medicine: the evidence and conceptual progress supporting a new era of healthcare

“…16 A recent systematic review examined patient reported measures of BOT in chronic heart failure, diabetes and chronic kidney disease and found that the majority of studies lacked direct patient input and did not show evidence of reliability of the measures used. 17 However, there has been recent interest in the development of more broadly focused patient-reported measures. 6,18,19 These measurements look promising and are currently being validated in different populations and settings.…”