A number of sickle cell patients manage a great deal of their pain episodes at home. This study sought to determine if provision of increased knowledge and skills in the use of pharmacologic and non-pharmacologic methods will provide sickle cell patients with greater self-management of pain, improved quality of life and decreased hospitalizations. Following IRB approval, a survey questionnaire for baseline data was administered to sickle cell patients at the sickle cell clinic at a major teaching institution serving the major regions of a state.

Analysis of 46 completed surveys revealed that the average age of respondents was 30 years of age and the majority were females (58.4%). 57.9% have a diagnosis of sickle cell anemia (hemoglobin SS), while 38.6% had hemoglobin SC disease, and 5% other hemoglobinopathies. About 22.2% of the respondents were taking potent opioids (narcotics) for pain control. About 44% reported experiencing mild-moderate pain events within the last 6 months. 60.0% had experienced moderate-severe pain requiring a visit to a medical facility within the past 6 months. More than 75% reported pain greater than 5 on a 0 – 10 point scale when asked to rate their pain during these events. Relaxation was reported as being used by 77.8% of respondents to help control pain, heating pad was used by 3.7%, and 14.81% report using other techniques to help manage pain events.

The data suggest that a significant number of people with sickle cell disease has significant pain and currently use a combination of pharmacological and non-pharmacological methods to manage pain events. There are opportunities for education and other interventions to improve such techniques and empower such patients to achieve improved pain control. As a corollary, this will decrease health care utilization and improve patients' well being and family life for this group of patients.