Despite emphasis on including patient and parent education in sickle cell comprehensive clinical care, literature on the use of such materials is scarce. To discover the availability of, satisfaction with, use of and interest in patient and parent education materials for sickle cell disease, we surveyed, with a 176-item self-administered questionnaire, 209 sickle cell professionals nationwide. Respondents came from 74 sickle cell programs, were 63.4% female and 37.7% African American, and represented many health professions. We found that materials about patient behavior and psycho-social issues, as opposed to those about the disease and treatment, were more often unavailable and, when available, more often unsatisfactory and less frequently used. When available, use of materials was unrelated to satisfaction and perceptions of patient problems for most topics. For each of 10 topics, over 90% of the respondents were interested in materials covering that topic. Future research should examine the low to moderate use of psycho-social and behavioral materials with sickle cell patients, and should assess the appropriateness and effectiveness of existing and new materials.
