Patient-reported outcome measures can provide meaningful information for providers and researchers to improve health-related quality of life for patients living with sickle cell disease by informing multidimensional approaches to care as part of a biopsychosocial model, according to a paper coauthored by Georgia Health Policy Center researchers. The study was recently published in the journal Quality of Life Research by the multistate Sickle Cell Disease Implementation Consortium.
“The routine assessment of patient-reported outcomes in clinical settings is in alignment with creating a patient-centered environment that can enhance communication and shared-decision making with clinicians, improve satisfaction for patients, and allow for more comprehensive monitoring of well-being,” says coauthor Angela Snyder, Ph.D., director of health policy and health care financing at the Georgia Health Policy Center. “While this may seem obvious, few studies have been able to link patient-reported outcomes with actual health care outcomes and care utilization in sickle cell disease.”
The current study involved 2,054 adults with sickle cell disease (ages 18 to 45 years) who completed a 48-item survey that assessed sociodemographics and patient-reported outcome measures like social functioning, pain impact, emotional distress, and cognitive functioning. Participants also reported on lifetime sickle cell-related complications, pain episode frequency and severity, and barriers to health care.
More than half of participants (55.2 percent) had three or more emergency department or inpatient admissions for acute pain episodes in the past year. Higher pain frequency was associated with higher odds of worse outcomes in all patient-reported outcome domains when controlling for age, gender, and site of care.
Income of $25,000 and less, having ever been treated for depression, and higher pain frequency were associated with higher odds for worse outcomes related to emotional distress. Having fewer individual barriers to care and fewer than three complications were associated with better outcomes related to emotional distress.
“It is critical to view quality of life, care, and treatment for individuals with sickle cell disease within a biopsychosocial model given the inter-relatedness of these variables and socio-demographics such as income and employment status,” says Snyder.
The Sickle Cell Disease Implementation Consortium was established by the National Heart, Lung and Blood Institute in 2016 to identify and address barriers to quality care in SCD and includes eight sites in diverse U.S. regions.
The Georgia Health Policy Center is the data coordinating center for the Georgia Sickle Cell Data Collection (SCDC) Program. The Georgia SCDC Program will expand its focus on pain as part of Georgia State University’s first-ever Research Innovation and Scholarly Excellence challenge in which Snyder and collaborators will develop the Building Research Expertise Across Teams for Health Equity (BREATHE) program to advance knowledge of pain science to improve the lives of people living with sickle cell disease.
Read the full paper here.