Dr. Stephanie Guarino's novel analysis found a significant relationship between self-efficacy in adults with SCD, and experiences of disease-related stigma.
According to data from the American Society of Hematology (ASH) Annual Meeting and Exposition, investigators were able to identify intertwined associations in patients with sickle cell disease (SCD): stigma, self-efficacy, and pain.
In summary, the novel analysis found a significant relationship between self-efficacy in adults with SCD, and experiences of disease-related stigma. Furthermore, the data demonstrated a centrality of self-efficacy and the catastrophizing of pain.
"Chronic pain in adults with sickle cell disease is an extremely complex phenomenon," Stephanie Guarino, MD, MSHP explained in an interview with HCPLive. "We know that it's the most common complication that affects adults with sickle cell disease, but it's not easy to treat."
Guarino, of Nemours Dupont Hospital For Children, Center for Special Health Care Needs/Institute on Research in Equity and Community Health, Christiana Care, led the investigation and presented results today at the conference. She echoed the overarching plight of sickle cell clinicans, and any clincian treating someone with pain.
"There are many things that cause chronic pain and the treatments are limited," she said. "This study helped us expand our understanding of things that drive chronic pain, and ways that we might be able to intervene to make that better."
Patients with sickle cell disease are especially exposed to a certain level of stigma, even when seeking treatment from healthcare professionals.
"We know that people with sickle cell disease face discrimination and racism at many different levels as they move through life," Guarino said. "And they also experienced stigma against sickle cell disease itself, particularly in the healthcare setting."
Guarino and her team of investigators hypothesized that these experiences could be influencing this patient population, more specifically, their self-efficacy in regards to their ability to manage sickle cell disease, and then cause, or worsen, chronic pain.
"The hypothesis was also that this might be an area of intervention in the future," she said. "If we could affect self-efficacy, or improve self-efficacy, this would be a way to, down the line affect chronic pain in adults with sickle cell disease, which is the ultimate goal."
According to Guarino, the team found that self efficacy in adults with sickle cell disease is affected by experiences of stigma. Something she found interesting was that one of the main drivers of self-efficacy and depressive symptoms in these patients was experiences of clinician communication.
"Experiences that patients described as discriminatory had a negative effect on self-efficacy, and experiences that they described as compassionate had a positive effect," she stated.
While there's still much to be learned about this relationship, Guarino believes that this study supports the need to look at it "more holistically" by choosing not to disregard the clinican role in chronic pain in the patient.