Indirect Economic Burden of Sickle Cell Disease.

Abstract

OBJECTIVE\nThis study aimed to quantify the indirect costs of sickle cell disease in the United States.\n\n\nMETHODS\nAdult patients from a sickle cell disease clinic at an urban academic healthcare system completed an adapted Institute for Medical Technology Assessment Productivity Cost Questionnaire related to the impact of their disorder on absenteeism, presenteeism, ability to contribute through unpaid work outside of employment, and other aspects of life. Additional data were collected from patient records about each participant s genotype, total hemoglobin level, and pain level.\n\n\nRESULTS\nOf the 192 individuals, 187 who completed the survey reported experiencing vaso-occlusive crisis pain events during the last year that negatively affected their productivity at work and in daily roles. Three-fourths of respondents reported impairment in their ability to complete everyday tasks, such as caring for children, running errands, doing housework, shopping for groceries, and volunteer (unpaid) work. Only 30% of respondents reported being employed or self-employed. Of those employed, estimated costs of absenteeism and presenteeism attributable to pain events averaged $15\u2009103 per person annually. Estimated total annual losses in unpaid work productivity averaged $3\u2009145\u2009862 for the study respondents and another $2\u2009870\u2009652 for their caregivers.\n\n\nCONCLUSIONS\nSickle cell disease affected the work productivity, nonwork productivity, and the daily lives of adults seen with the disorder in an academic medical center.