Patient Information
Sickle cell disease and thalassemia are unpredictable, chronic diseases requiring complex management by specialized health care professionals. Ongoing assessment and intervention as well as active participation of the patient and caregivers is essential to providing the most effective treatment available. Optimal management of sickle cell disease and its complications may result in improved outcomes for those affected by this potentially devastating disease.
- Complications
- Newborn Screening/ Genetic Counseling
- School Visitation Program
- Sickle Cell Day Hospital
- Comprehensive Annual Visit
- Ongoing Educational Support
Some of the complications and effects of this disease include:
- Episodic pain crises and chronic pain
- Frequent hospitalizations, emergency room / clinic visits
- Increased susceptibility to bacterial infections
- Slowed growth
- Impaired fertility
- Overt strokes and subclinical strokes
- Ischemia with tissue damage to heart, lungs, bone marrow, brain, kidneys, spleen
- Psychological stress due to the unpredictable nature of the illness and the potential for suboptimal functioning and/or attendance at school or work. This can also affect one’s interpersonal relationships in a negative manner.
- The potential for lowered self-esteem. Lowered self-esteem can have a direct impact upon the patient’s compliance with home management, the general treatment plan and keeping clinic appointments.
In order to optimally address these potential issues, a multidisciplinary team consisting of a physician (pediatric hematologist), registered nurse, social worker, psychologist, dietician and clinic coordinator will help spearhead each patient’s care. This team and our clerical and support staff recognize that patients and caregivers also must be an integral part of the team if success is to be achieved.
Newborn Screening/ Genetic Counseling
You are welcome to contact us here at the University of Michigan Hospitals for initial consultation/evaluation by our comprehensive sickle cell/thalassemia team. We will review with you and your family carefully the meaning of a positive newborn sickle cell screen. We provide in-depth education for all newly diagnosed sickle cell and thalassemia patients’ families in the following areas:
- Genetics/family history
- Pathophysiology
- Natural History
- Treatment Plan
- Home management of illnesses/pain
- Emergencies
- Immunizations
- Nutrition
We also provide genetic counseling for families with a family history of sickle cell trait or anemia and who would like us to discuss the implications of future pregnancies.
School Visitation Program
The School Visitation Program is run by our Child Life Specialist, Genny Dillard. We frequently visit our patients’ schools throughout the calendar year to help educate teachers and school administrators regarding sickle cell disease and its impact on school performance, absences due to painful episodes, and preparation for physical education activities (drinking lots of fluids, allowing rest between activities). To request a visit, please contact Ms. Dillard via the U-M Paging Service, 734-936-6266, enter page # 33114 or e-mail gennyd@umich.edu.
Sickle Cell Day Hospital
Our sickle cell program has implemented a new plan for pain control here at the University of Michigan Hospitals. In an effort to decrease ER visits and hospitalizations, and improve continuity of care, we have a day hospital for acute pain management in our Pediatric Infusion Center. Every family must call our outpatient clinic phone 764-936-9814 to make a day hospital appointment or see if beds are available. You must plan to arrive before noon. We will not accept walk-ins (same day, no calls) as we need to make sure we can accommodate patients during that day.
Comprehensive Annual Visit
Each patient will a have a comprehensive visit at the beginning of the program and annually thereafter. This visit will consist of obtaining:
- Appropriate historical, medical, psycho-social and educational data
- A complete physical examination
- Laboratory data
- Parameters of growth and development
- An assessment by the physician, nurse practitioner, psychologist, social worker and nutritionist
Caregiver input will be solicited because it is crucial to help determine overall needs and goals in developing the annual health care plan. The child’s input will also be obtained when the child is of an appropriate age. Once an agreement has been achieved by all parties, a written comprehensive plan will be completed with recommendations from our multidisciplinary sickle cell/thalassemia team. A copy of this comprehensive annual visit will be placed in the medical records, sent to the primary care provider, parents/caregiver, and other appropriate health care providers.
Ongoing Educational Support
An educational assessment will be conducted on each child/family as a part of the annual evaluation. Additional educational activities will be based on the annual assessment and as new problems or issues arise for the family/child. A variety of printed educational materials are available in our clinic and will be given to each family as needed. Most of the program’s educational materials have been developed by and obtained through national sickle cell programs. Additional brochures and information packets are available. Please see the related links section for more in-depth information about sickle cell disease.
