Cost of informal care for patients of cardiovascular disease and diabetes: current evidence and research challenges

Patients with cardiovascular diseases (CVD) and diabetes often require informal care to accomplish various activities in their daily living. The burden of informal care, however, has not yet been fully integrated into economic evaluation as well as cost-of-illness literature. We summarized the evidence for economic burden of informal care to patients with CVD and diabetes, and assess the data and methods used in the literature. We searched EconLit, EMBASE and PubMed for publications in English during the period of 1995 to 2015. Keywords for the search were informal care cost, costs of informal care, informal care, informal care, economic burden. We excluded studies without monetary values of informal care; studies about measurement methods or factors affecting informal care; studies which did not address CVD or diabetes; and review articles, editorial letters, and commentaries. Our search resulted in 141 journal articles. After screening, 10 articles (6 on stroke, 2 on heart failure and 2 on diabetes) met our criteria. Available evidence indicated that estimated annual costs of informal care attributable to each examined disease in the US ranged from $1,563 to $7,532 per stroke patient, around $860 per heart failure patient, and from $1,162 to $5,082 per diabetes patient. The non-US studies reported total cost of informal care, which were provided by caregivers of a patient with each examined disease. The main weaknesses of the literature were data from recall method, which may provide inaccurate, and subjective informal care hours, and a small sample size (e.g., with <500 study subjects).The costs of informal care are substantial and should be included in cost-of-illness literature.  Public health officials should consider such costs in making resource allocation decisions. Improvements such as collecting proper hours of informal care and methods for cost estimation will facilitate the integration of these costs into economic evaluations.