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Families with Pediatric Sickle Cell Disease Find SDoH Screening Useful


Children with sickle cell disease who are living in poverty often have a lower quality of life, higher healthcare use and higher complication rates. But hematologists can uncover the needs of these children and families to connect them to local resources and improve outcomes for patients, according to a study published in the journal Pediatric Blood and Cancer.

Researchers at Boston Medical Center followed patients diagnosed with sickle cell disease who were universally screened for social determinants of health between August 2017 and November 2018. Patients were screened with WECARE (Well Child Care, Evaluation, Community Resources, Advocacy, Referral, Education), a one-page, self-reporting paper tool used to assess patients’ security of housing, food, medication, transportation, utilities, daycare and employment.

Of the patients screened, 66% were positive for at least one unmet social need, most commonly food insecurity and difficulty paying utilities. In that subset, 80% of patients were referred to a relevant community organization.

“As pediatricians and hematologists, we want to improve the well-being of the whole patient, not just their blood disorder,” said lead author Alexandra Power-Hays, M.D., a pediatrician at Boston Medical Center. “Now that we’ve demonstrated that a simple method can begin addressing socioeconomic needs, we hope that pediatric hematologists across the country will also adopt this model for more long-term healing solutions.”

The research team set out to determine the feasibility of a universal screening for social determinants of health using pre-existing researchers. Other goals included identifying the needs of the patients at Boston Medical Center and to facilitate referrals between its patients and community organizations. The study was also designed to overcome barriers to physicians being proactive in asking their patients about social determinants of health.

When the research team identified patients with unmet social needs, they referred the patients to assistance programs. Fewer than half (45%) of the patients reached out to a community organization. Nearly 70% found the assistance of the organization helpful.

If a family needed immediate assistance, they were scheduled to meet with a social worker.

In a follow-up, patients answered, based on a 5-point Likert scale, how likely they were to continue discussing socioeconomic matters in the clinic. The average answer was 4.1, which shows that patients had a positive experience with the service.

Addressing social determinants of health can be a cost-effective preventive measure by reducing hospitalizations and emergency room visits.

“There is a high burden of (social determinants of health) in families of children with (sickle cell disease),” the authors wrote. “Universal screening in a pediatric hematology clinic with the subsequent connection of patients with (sickle cell disease) to community resources is feasible using existing clinical resources.”

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