Understanding patient distress in sickle cell disease

While distress is well documented in patients with sickle cell disease, the sources of distress and how patients manage the distress have not been adequately explored.

Our study found that the most profound source of distress for the patient with sickle cell disease in a home visiting program was anticipating and moving to acute care centers to manage their acute pain.”

Maryanna Klatt, PhD, senior study author, director of the Center for Integrative Health at Ohio State University Wexner Medical Center

The findings of the study are published in the journal Qualitative Research in Health.

These findings reinforce the researchers’ earlier perspective published in New England Journal of Medicine who reported the need for a biopsychosocial model for the treatment of chronic pain in sickle cell disease.

Researchers recruited 11 patients with sickle cell disease from a home visit program at Ohio State Wexner Medical Center between February and July 2021. They wanted to identify sources of distress for people with sickle cell disease.

A researcher conducted semi-structured interviews with study participants. The research team coded and analyzed all interview transcripts.

Participants said the most profound source of distress was clinical encounters in the emergency department and intermediate care center for the management of acute pain flares.

Important findings

• “Pain performativity” is a strategy some patients use to try to show providers their pain.
• Researchers should examine how clinical settings and practices enhance distress.
• Listening to patients can help clinicians reduce distress.

“We found that there is often a performative element for people with sickle cell disease in urgent and intermediate care settings. They feel they have to present it in a certain way so that providers see their pain as credible and address it immediately. However, often, the patients are simply unable to process their pain or to ‘cry it out,’ as one participant put it,” said study first author Janet Childerhose, PhD, assistant professor in the Department of Internal Medicine at The Ohio State College of Medicine.

“Our analysis also found that stigma and racism surround the care of this neglected disease. Participants have no sense of control over their pain management plan,” said Klatt, who is also a professor in the Department of Family and Community Medicine. “Researchers may wish to consider how these settings might better address patient distress, and providers may wish to adopt participants’ recommendations to reduce distress associated with seeking pain treatment in acute care settings.”