Qualitative Study Reports Perspectives on Optimizing Pediatric Sickle Cell Care

Maite Houwing, MD

A new study gauged professional perspectives on barriers to access for pediatric patients with sickle cell disease (SCD).

“In well-resourced countries, comprehensive care programs have increased life expectancy of patients with sickle cell disease, with almost all infants surviving into adulthood,” the investigative team wrote.

“However, families affected by sickle cell disease are more likely to be economically disenfranchised because of their racial or ethnic minority status.”

They indicated a continued need to identify barriers and facilitators to the delivery of adequate healthcare for these patients.

The team, led by Maite Houwing, MD, Department of Pediatric Haematology, Erasmus University Medical Centre, Netherlands, interviewed healthcare professionals with experiences working with sickle cell youth.

The investigators identified common themes and reported on noteworthy best practices as recommendations. The overall goal of their semi-structured interview format was to ascertain the current gaps in pediatric care and possible means of addressing them.

Improving Pediatric Care: Major Themes

Houwing and colleagues interviewed 22 healthcare professionals from 5 different university hospitals based in the Netherlands. The cohort was a mix of pediatric hematologists, specialized nurses, psycho-social, and other medical staff.

A majority of the population was female (n = 19) and white (n = 21), and the average length of experience in their profession was 8.5 years.

Many of the healthcare professionals recognized that sickle cell disease disproportionally affects low-income communities and families likely to experience financial hardships.

Families may face difficulty in funding travel (if long-distanced travel to a centralized sickle cell care center is required), treatments, and preventative measures, such as general vaccinations. Additionally, single parent households, siblings, and parent unemployment can add further burden to these already at-risk children.

“It is pertinent to recognize that many families struggle to meet the extra financial demands of caring for a child with SCD,” the investigators wrote.

“Therefore, attention must be given to proactive interventions aimed at addressing all extra costs, including full coverage of medical treatment, support for housework and childcare, and access to charitable funding,” they continued.

The investigators also reported that the frequency of hospital visits can pose a significant burden on patients, especially if the visits are far from the community. Many physicians recommended clustering appointments on the same day, including check-ups with a nurse practitioner, examinations and laboratory tests, and appointments with medical and social workers.

Healthcare professionals emphasized the utility of shared care hospitals, which foster collaborations between sickle cell specialists and general practitioners/pediatricians. Many considered it a useful step in educating primary care pediatricians about SCD, thus potentially contributing to the optimization of access within disadvantaged communities.

“The overall goal is to deliver specialized services as close as possible to the patient’s home without compromising quality,” the investigators wrote as a theoretical benefit to the model.

Additional recommendations included ensuring language barriers are overcome and that parents are able to understand critical information, increasing methods for families to digitally connect with healthcare providers in a way that addresses inherent resource disparities, and increasing awareness in both the healthcare and lay communities about the disease and context in which many patients live.

Final Thoughts

Houwing and colleagues recognized the limitations that exist for fully generalizing recommendations to other countries and healthcare systems. Nonetheless, they touted their representative sample of healthcare professionals and the internal and external agreement of recommendations and themes.

“Medical professionals working outside the field of (pediatric) SCD may recognize that some of their patients face similar barriers in accessing healthcare,” the investigators acknowledged.

“Therefore, the recommendations we propose may be worthwhile to implement in other contexts as well.”

The study, “Improving access to healthcare for paediatric sickle cell disease patients: a qualitative study on healthcare professionals’ views,” was published online in BMC Health Services Research.