Feasibility of Using the American Time Use Survey to Study the Impact of Sickle Cell Disease and Hematopoietic Cell Transplant on the Daily Lives of Patients and Their Caregivers: A Stellar Study

Introduction

Sickle cell disease (SCD) is associated with substantial morbidity, impaired health-related quality of life (HRQoL), and decreased survival. While, hematopoietic cell transplantation (HCT) for SCD, is associated with excellent overall and event-free survival, however, there are limited studies in this population to assess the ability to participate in social roles and level of economic productivity. The American Time Use Survey (ATUS) was designed to provide a comprehensive measure of the amount of time people spend doing various daily activities in the United States. We performed a pilot study using ATUS in post-transplanted SCD patients, parent proxies, and non-transplanted patients.

Methods

Patients ≥15 years old or one caregiver for patients ≤ 15yrs with SCD including those ³1-year post-HCT already enrolled in the parent Sickle Cell Transplant Evaluation of Long-term and Late Effects Registry (STELLAR) study were contacted for this sub-study. After providing informed consent, participants were contacted to schedule an interview. The survey was conducted using a computer assisted telephone interviewing (CATI) platform (Voxco). During the interview, participants were asked how they spent the 24 hours beginning 4 AM the day before the call, their "designated day," and ending 4 AM the day of the call. Each reported activity was assigned a 6-digit code, with 85 possible activities grouped into 6 specified main categories related to health, education, work, work-related travel, household activities and time spent caring for children. Data collection, coding of the data, coding rules, verification, data processing, edits, imputation, data quality, and coding quality were determined by the ATUS user guide.

Results

Of the 133 participants in the STELLAR study, 34 participants (25%, Adult post-HCT Patients = 9, Caregivers for Post-HCT and Non-HCT patients = 15, and non-transplanted adult SCD patients = 10) completed the ATUS interview. The interviews lasted 28 minutes (median; range 20-58min). Sixty-one percent of participants were female, 86% were African-American, and 55% were working, of whom 80% were working 35 hours or more a week (Table 1). Details of time spent on specific activities are presented in Figure 1. Seven participants (21%) reported spending a mean 47 minutes (SD 25.80, Median 45, range 5-75 IQR 50) in direct health-related self-care, 8 participants (24%) reported mean 138.13 minutes (SD 111.64, Median 97.5, range 15-330 IQR 162) in education related activities, 17 participants (55%) reported mean 337.53 minutes (SD 225.91, Median 450, range 30-630 IQR 420) in work-related activities.

Conclusion We report the feasibility of using ATUS in SCD populations to study the impact of SCD on the daily lives and economic productivity of patients and/or caregivers. The relatively high rates of unemployment and time spent in health-related personal care activities observed in this sample are worthy of further study.

No relevant conflicts of interest to declare.