Infants and young children with sickle cell disease (SCD) may benefit from a patient-centered medical home (PCMH) model for comprehensive care, according to a study published in Pediatric Blood & Cancer.

In 2011, researchers established a newborn cohort clinic (NCC) at Ann & H. Robert Lurie Children’s Hospital of Chicago in Illinois to provide comprehensive care for infants and young children aged 3 years or younger with SCD. Parents, or other primary caregivers of patients in the NCC, were surveyed for their impressions of the program.

At the time of the report, 112 patients had been treated in the clinic; 42 graduated from the program, and 70 were continuing to receive care in the NCC.

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All patients were administered penicillin prophylaxis, which was initiated at a mean age of 2.3 months. By the age of 3 years, 23-valent pneumococcal polysaccharide vaccine was administered to 70% of eligible patients and transcranial Doppler was performed on 73% of eligible patients.

Emergency department utilization was reported among 82% of patients, with the majority (86%) of visits related to SCD. Hospital admissions occurred with slightly over half (54%) of emergency department visits. Nearly all (99%) of these admissions were for reasons associated with SCD.

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Among parental/guardian survey respondents, 71% reported satisfaction with the amount of time NCC providers spent with their children; 77% reported a perception that staff showed sensitivity to family values and customs, 81% felt that NCC providers carefully listened, 81% reported that NCC providers always or usually gave them specific information they needed, and 78% reported feeling that the clinic enabled them to feel like partners in the care of their children.

“This report suggests that a comprehensive sickle cell clinic that uses PCMH principles can achieve high uptake of preventative care measures and high levels of parent satisfaction,” concluded the researchers.


Barriteau CM, Murdoch A, Gallagher SJ, Thompson AA. A patient-centered medical home model for comprehensive sickle cell care in infants and young children [published online April 11, 2020]. Pediatr Blood Cancer. doi: 10.1002/pbc.28275