This form is designed to help facilitate understanding of the family’s circumstances, knowledge of sickle cell disease, and satisfaction with health care and to identify patient and family concerns and potential barriers to appropriate treatment. It should be completed by the family when the child is not ill (e.g. in the waiting room prior to a clinic visit) and subsequently reviewed with the family by a health care provider. Print this form, complete it and give to your provider.

Please answer the following questions by circling yes or no

Do you have any problems getting good health care for your child? Yes No

Do you feel comfortable with how well you can treat and control your child’s pain at home? Yes No

Do you know how to take your child’s temperature? Yes No If your child is less than 5 years old, can you feel the belly for enlargement of the spleen? Yes No

Are you comfortable with your understanding of sickle cell disease? Yes No Do you want more general information? Yes NoDo you need more information on how sickle cell disease is inherited? Yes No

Do you have problems with health insurance? Yes No with parking? Yes No with transportation? Yes No

Do you feel your child’s pain problems are treated well when your child is in the hospital? Yes No

Which emergency room do you use? _________________________________ Are you comfortable with the staff’s knowledge of sickle cell disease and the way they treat your child’s pain? Yes No

Do you feel that the people who work at our clinic understand and are sensitive to your cultural background and needs? Yes No

Do you feel that you have the opportunity to take part in making decisions about your child’s health care? Yes No

Do you get the kind of help from others that you need? Yes No If yes, from whom? (circle) Family Friends Church Other: _____________________________

Would you like more contact with another family who has a child with sickle cell disease? Yes No

What is your child’s grade in school? _________ Is your child enrolled in special education? Yes No Do you feel there is a need for a better understanding of your child’s special needs at school? Yes No About how many days did your child miss from school last year? _________

If your child is more than 12 years old, are you receiving services to help your child prepare for an independent adult life?Yes No

Are your other children having any problems because of their brother or sister with sickle cell disease? Yes No Are there any other worries in your life? Yes No

Would you be willing to work toward getting better care and more research on sickle cell disease? Yes No Are you a member of the Sickle Cell Disease Association? Yes No

What are the hardest things about sickle cell disease that you have to deal with? ___________________________________________________________________________________________________


What else can we do for you? ___________________________________________________________________________________________________


Name of child: _____________________________________ Age: __________

Date of Birth: __________________

Who completed this form? (Name, relationship to patient)

____________________________________   Date____________