Quality of Life Burden in Adults with Sickle Cell Disease

Adults with SCD experience HRQOL burden, such as the inability to work, following an incidence of VOC that is associated with the blood disorder.

A mixed-methods study, led by Jennifer Drahos, PhD, MPH, investigated HRQOL, work impacts, and perceived health inequalities of patients with SCD who experience recurrent VOCs. Through patient advocacy groups, the researchers conducted interviews and surveys at three timepoints—baseline, three months, and six months. Participants (n=142) were from France, Germany, Italy, the United Kingdom, and the United States.

Researchers determined that nearly 40% of adults with SCD in the surveyed population experienced a recent VOC (<1 week), which had significant negative effects on HRQOL and functional status. Furthermore, patients with a recent VOC were unemployed (76.8%) or unable to work (64.7%) because of SCD.

Several patient-reported outcome measures were included in the survey, such as the FACT-G, the EQ-5D-5L, and the Work Productivity and Activity Impairment questionnaire.

The mean EQ-5D visual analogue scale among patients with a recent VOC was 49.2, which was 16.2% and 38.8% lower relative to the overall study population (58.7) and the US general population (80.4), respectively.

All FACT-G domain scores were negatively affected by a recent VOC. The mean score was 53.6 compared with 62.5 in the overall population.

In addition, patients with a recent VOC also had a greater mean number of emergency room visits (9.6 vs 6.2), hospitalizations with overnight stays (6.0 vs 4.0), and days overnight in the hospital (21.8 days vs 14.7 days) in the past year compared with the overall population.

“These results demonstrate the substantial humanistic burden of those living with SCD with recurrent VOCs and the additional impairment of a recent VOC,” the researchers said.

HRQOL and unmet needs in this patient population can be improved through novel treatments that reduce or eliminate VOCs, they concluded.

Reference

Drahos J, Boateng-Kuffour A, Calvert M, et al. The impact of recent vaso-occlusive crisis on health-related quality of life in adults with sickle cell disease. Abstract #3678. Presented at the 65th American Society of Hematology Annual Meeting & Exposition; December 9-12; San Diego, California.