Related Experiment Video
Updated: Dec 24, 2025
A Precision Medicine Tool for Measurement and Monitoring of Hemoglobin S in Sickle Cell Disease Patients Receiving Transfusion Therapy
A patient-centered medical home model for comprehensive sickle cell care in infants and young children
Christina M Barriteau1, Alexandra Murdoch1, Shannon J Gallagher2
1Division of Hematology and Oncology, Department of Pediatrics, Feinberg School of Medicine, Northwestern University, Chicago, Illinois, United States.
Insights
A patient-centered medical home (PCMH) model for children with sickle cell disease (SCD) is feasible, improving preventative care. Parents reported high satisfaction with this comprehensive care approach.
Area of Science:
- Pediatrics
- Hematology
- Healthcare Management
Background:
- The patient-centered medical home (PCMH) is a proposed model for comprehensive care coordination in pediatric sickle cell disease (SCD).
- Limited data exists on PCMH implementation's impact on preventative care adherence, healthcare utilization, and parent satisfaction in children with SCD.
Purpose of the Study:
- To evaluate the application of the PCMH model in a newborn cohort clinic (NCC) for infants and children with SCD (birth to 3 years).
- To assess adherence to preventative care, healthcare utilization, and parent satisfaction within the NCC model.
Main Methods:
- Implementation of the newborn cohort clinic (NCC) applying PCMH principles for children with SCD from birth to age 3.
- Retrospective chart review of patients managed in the NCC and parent satisfaction surveys.
Main Results:
- 112 patients managed in the NCC; high adherence to penicillin prophylaxis (100%), 23-valent pneumococcal vaccine (70%), and transcranial Doppler screening (73%) by 36 months.
- Most patients (81%) utilized emergency services for SCD-related complications (fever).
- High parent satisfaction reported: 71% felt providers spent adequate time, 81% felt providers listened carefully, 77% felt providers were sensitive to family values.
Conclusions:
- A comprehensive sickle cell clinic integrated within a PCMH framework is achievable.
- This model demonstrates high adherence to essential preventative care measures for pediatric SCD.
- Parents express significant satisfaction with the PCMH-based care model for their children with SCD.
Background:
The patient-centered medical home (PCMH) has been proposed as a model for comprehensive care coordination and delivery for children with sickle cell disease (SCD), yet little is known regarding the implementation of PCMH core concepts on adherence to preventative care measures, health care utilization, and parent satisfaction.
Procedure:
We implemented the newborn cohort clinic (NCC) to explore the application of the PCMH model for infants and children with SCD from birth to age 3 years in 2011. In July 2017, we conducted a retrospective chart review to evaluate subjects currently or previously followed in the clinic. We surveyed parents in the NCC to assess their satisfaction with their experience.
Results:
A total of 112 patients have been managed in the NCC. All patients received penicillin prophylaxis, while 70% and 73% of patients, respectively, received the 23-valent pneumococcal vaccine and an initial transcranial Doppler by age 36 months. Most (92 of 112) of the subjects utilized the emergency department (569 encounters), with 86% of encounters for fever or other sickle cell-related complications. The majority of parents indicated satisfaction with the clinic, with 71% saying clinic providers always or usually spent enough time with their child, listened carefully to them (81%) and were sensitive to family values and customs (77%).
Conclusions:
A comprehensive sickle cell clinic as a component of a PCMH is feasible and can achieve high levels of preventative care. Parents are largely satisfied with this model of care.
More Related Videos
Related Concept Videos
01:13Patient-centered Care
01:30Specialized Care Centers and Settings-I
Daycare centers
They provide several functions. Some facilities care for healthy newborns and children whose parents work, while others are medically focused and care for...
01:30Specialized Care Centers and Settings-II
Rural health centers are specialized care facilities in remote locations with very few medical personnel. The primary care providers who run the centers are mostly Registered Nurse Practitioners. Here, emergency treatment is provided to critically ill or injured patients before they are transferred to the closest hospital. Fortunately, due to advancement in technology, many rural healthcare facilities and professionals have easy access to diagnostic and treatment...
01:15Methods of Documentation VI: Case Management Model
For example, a patient with a chronic...
01:30Primary Healthcare Services
In 1978, international leaders convened in Alma-Ata, Kazakhstan, for what would be a pivotal event in global health. The Alma-Ata Declaration was the first to call...
01:29Documentation in Long-Term and Home Healthcare Setting
Long-Term Care Facilities