Pediatric sickle cell disease, a chronic blood illness, not only brings on frequent, acute pain episodes, it also affects a child’s overall well-being at school and home. To effectively handle sickle cell disease, patients need consistent contact with specialists, as well as continual education about the illness. Cooperation between clinicians and caregivers is needed to achieve optimal management of the disease.

The staff of the Comprehensive Pediatric Sickle Cell Clinic in the U-M Comprehensive Cancer Center understands the burden sickle cell disease places on patients and their families. Their goal is to help families cope with the hardships that accompany the illness. The diverse staff of the Pediatric Sickle Cell Clinic includes pediatric hematologists (doctors trained to treat children with blood disorders) Jim Williams, M.D., and Drew Campbell, M.D.; nurse specialist Sally Hutchinson, R.N., M.S.N., C.P.N.P.; social worker Maren Jensen, M.S.W.; psychologist Pamela Dixon, Ph.D., L.L.P.; dietician Nancy Burke, R.D.; and clinic coordinators Dianne Hatfield and Erica Muirhead. Along with encouraging active participation from caregivers, the team provides a multifaceted approach to managing pediatric sickle cell disease through its annual comprehensive evaluations of all patients.

During an annual evaluation, a family consults with each member of the Pediatric Sickle Cell Clinic team. The pediatric hematologist assesses the patient’s pain crises and medications, and gives a complete physical to look for complications, such as organ failure or anemia. The social worker discusses social and academic stressors with the family, helping them improve those situations. The child’s eating habits are gauged by the dietician, who educates both patient and family on proper nutrition. The psychologist administers a psychiatric evaluation, testing for depression or low self-esteem—both common in sickle cell patients. Finally, the nurse specialist reinforces the use of penicillin, immunizations, and correct pain management procedures. The child’s caregiver actively participates in each visit, which helps the team establish an effective plan for managing the patient’s health.

The Comprehensive Pediatric Sickle Cell Clinic team, through coordination with families and annual evaluations, makes a difference in quality of life for its patients. And the patients have a substantial impact on the clinic. About his involvement with the clinic, Campbell says, “It is great to be able to bond with families. Watching the children grow and get better with our help is very rewarding.”