genetic disease screening program

Parent and Caregiver Handbook for Sickle Cell

Appendix: Comprehensive sickle cell disease care plans

Birth – 6 years
6 years – Adult

Note: These are sample care plans recommended by UCSF Benioff Children's Hospital Oakland Sickle Cell Center. If you have any questions, ask your child's doctor or sickle cell care center.

Comprehensive Sickle Cell Disease Care Plan: Birth - 6 Years

Evaluation	Interval
General Physical Exam	cell empty
Under 6 months	Once a month
6 months–1 year	Every 2 months
1–6 years	Every 3–4 months
immunizations & TB Tests	See shots schedule in Appendix F
Comprehensive Social Worker evaluation	cell empty
Interview	Every 2 years
Home visit	Once a year
School Assessment	One a year
Genetic Counseling Services	cell empty
Family Studies	First visit
Counseling and Education	1–3 times a year
Hematology (red blood cell) evaluation	Every 3 months to age 2; then every 6 months
Liver Studies	Once a year after age 12 months
Gallbladder evaluation	Every year after age 12 months
Renal (kidney) tests	Once a year after age 12 months
Brain (TCD Screening)	Annually beginning at age 2 (more often if needed)
Cardiac (Heart) tests	Every 2 years
Pulmonary (Lung) tests	Every 6 months or when needed after age 12 months
Dental Evaluation	Once a year starting at age 3
Psychological/Family Therapy Consultation	Once a year
Physical Therapy Assessment	When needed
Developmental Screen	Once a year or when needed

Comprehensive Sickle Cell Disease Care Plan: 6 Years - Adult

Evaluation	Interval
General Physical Exam	cell empty
6–8 years	Every 3–4 months
9–18 years	Every 4–6 months
Over 18 years	Every 6–12 months
Diphtheria and Tetanus Booster	Every 10 years after initial series
Other Immunizations	As advised by sickle cell doctor
Flu Shot	Once a year
TB Tests	Once a year
Comprehensive Social Worker Evaluation	cell empty
Interview, Evaluation, & School Assessment	Once a year
Genetic Counseling Services	cell empty
Family Studies	First visit
Sickle Cell Counseling	Once a year or as needed
Hematology Evaluation	Every 4 months to twice a year
Liver and Gallbladder Evaluation	As advised by sickle cell doctor
Renal (Kidney) tests	At least once a year
Echocardiogram (Heart) test	By 10 years with follow-up as indicated
Ophthalmology (Eye) tests	Once a year (after age 10 years)
Pulmonary (Lung) Function Testing	By 10 years with follow-up as indicated
Dental Evaluation	Once a year
Neurological Evaluation	Once a year
Psychological/Family Therapy Consultation	Once a year
Physical Therapy Assessment	As necessary
Formal Nutrition Assessment	Every 2 years or as needed
Sickle Cell Patient Education	1–3 times a year or as needed
Transition Evaluation	Age 12 years then yearly
School Performance Evaluation	Once a year