Researchers determined that biopsychosocial aspects were independently correlated with symptom frequency and complications in patients with sickle cell disease (SCD), as published in Quality of Life Research.

This observational study led by Treadwell included 2054 patients previously diagnosed with SCD, aged 18 to 45 years, who completed a patient-reported outcomes (PROs) questionnaire with 48 items regarding sociologic, demographic, and clinical characteristics, including symptom frequency, health behaviors, and barriers to care.

They measured PROs using an item response theory-calibrated item bank with questions from the Adult Sickle Cell Quality of Life Measurement Information System, National Institutes of Health’s Patient-Reported Outcomes Measurement Information System, Patient Health Questionnaire, Beck Depression Inventory-2, and Center for Epidemiologic Studies Depression Scale. 

The most relevant findings were that patients who reported a higher frequency of pain episodes also showcased increased odds of worse outcomes in all 7 PRO domains. Likewise, a history of being treated for depression was also associated with 5 PRO items. The emotion domain had better outcomes in those with fewer barriers to care and disease complications.

Read more about SCD comorbidities

“Less than three percent reported a diagnosis of diabetes, and 26% reported current or previous treatment for depression,” the authors said. “Over 80% of participants reported no barriers to needed healthcare, with 18.2% reporting 1 or more Access barriers and 18.1% reporting 1 or more Individual barriers.”

“Almost all (92.2%) participants had outpatient visits with their primary care provider or SCD specialist within the past year. More than half (55.2%) had three or more [emergency department] or inpatient admissions for acute pain episodes in the past year (27% missing data).”

These results highlight the importance of addressing such factors in the management of SCD. With more than a quarter of the sampled individuals reporting a past or current diagnosis of depression and nearly all attending at least yearly consults, including those for mental health, evaluating these patients should be encouraged, the authors said.

“We highlighted how critical it is to view lives, care and treatments for individuals with SCD within a biopsychosocial model given our sample’s high prevalence of history of depression, impact of pain experiences in every PRO domain, yet positive associations with fewer barriers to care and disease complications and interrelations between these variables and socio-demographics such as income and employment status,” they concluded.


Treadwell MJ, Mushiana S, Badawy SM, et al. An evaluation of patient-reported outcomes in sickle cell disease within a conceptual model. Qual Life Res. Published online April 21, 2022. doi:10.1007/s11136-022-03132-z