Financial Concerns Are Common Among Family Surrogate Decision-Makers of Patients With Stroke: A Mixed Methods Study.

Background and objectives: Stroke has a large aggregate financial effect, but the prevalence and predictors of cost concerns among family surrogate decision-makers of patients with stroke are unknown. The aim of this study was to explore the prevalence, predictors, and nature of cost concerns among family surrogate decision-makers of patients with stroke.

Methods: Family surrogate decision-makers of patients with stroke were recruited from a largely biethnic population-based study in Nueces County, TX. The primary outcome was the presence of cost concerns, defined as being "very worried" or "moderately worried" about being able to pay stroke-related medical costs, assessed through surveys conducted at baseline (shortly after stroke) and 3-, 6-, and 12-month poststroke. Potential predictors included clinical and sociodemographic factors for patients and family members, obtained from surveys and medical charts. Exploratory multivariable logistic regression models identified factors associated with cost concerns, adjusting for covariates. We also explored the nature of cost concerns in semistructured interviews with a subset of participants.

Results: Of 465 eligible stroke cases, 318 family members of 256 patients with stroke participated. Patients were 52% female, 58% Mexican American (MA), 38% non-Hispanic White (NHW), and 8% other race/ethnicity, mean age 75 (SD 14), and median NIH Stroke Scale score of 12.5 (IQR 5-22). Family members were 76% female, 63% MA, 32% NHW, and 5% other race/ethnicity, mean age 56 (SD 13). Of 256 patients, 118 (46%) had a family member with cost concerns. After adjustment for all covariates, MA ethnicity and lack of insurance were associated with greater cost concerns. Cost concerns decreased over time and were less common among family members who were neither a spouse nor a child of the patient. In semistructured interviews, cost concerns related to postacute care were most frequently mentioned, but concerns regarding hospital costs and nonmedical costs were also common.

Discussion: Nearly half of family surrogate decision-makers of patients with stroke had at least moderate concerns about being able to afford stroke-related medical costs. Lack of adequate insurance and membership in a historically marginalized ethnic group were the strongest predictors of cost concerns.