Connecticut Children's Medical Center
The purpose of this study is to validate a brief survey tool, the Sickle Cell Pain Burden Interview (SCPBI), which can be used in the clinical and/or research settings to assess the impact of pain on children with sickle cell disease. The daily impact of pain on children with sickle cell disease is not well understood. In addition there are currently no valid instruments that stratify children with sickle cell disease in regards to pain severity or impact. This tool could also be used to track the efficacy of interventions over time.
Patient and family are approached in the outpatient Hematology clinic or on the inpatient floor. The parent and child will complete a demographic information and general medical history form as well as several other questionnaires that deal with pain and emotions. Patients will be followed up a few times over the next year with brief check-up phone calls to monitor how you/your child are dealing with pain.
If the SCPBI can be validated in this study, it can be utilized in the clinical setting. Doctors and healthcare providers can use this new tool to assess a patient’s pain burden over the month prior to the clinic visit. The provider can track pain burden over time and use it as a way to track pain management over time.