Patients with sickle cell disease (SCD) often experience excruciating, sometimes daily, pain episodes that can lead to emergency department visits and hospitalizations. At a workshop in 2008, seven patients who were successfully managing their SCD said tactics such as keeping journals, seeking spiritual support, choosing the right career, and ensuring proper rest and nutrition were instrumental in helping them manage their disease and pain.
The patients, recruited from across the country by the workshop panel, shared that self awareness was an effective strategy for managing their disease. Journal entries that tracked which foods or activities triggered pain episodes were especially helpful, as was heeding body signals that told them they needed more rest. Emotional support through spiritual support, friends and family, and professional counseling was the second most common strategy the patients mentioned for disease management.
Paula Tanabe, Ph.D., M.P.H., and Jerlym Porter, Ph.D., of the Northwestern University Feinberg School of Medicine and colleagues suggest that health care providers might consider encouraging their patients with SCD to use journals or seek counseling or support groups to control symptoms. The patients also recommended choosing a career that offers flexibility and health and retirement benefits and is not physically overtaxing. A diet rich in fruits, vegetables, and whole grains, but sparse in meats with high iron content was also recommended.
The authors suggest physicians consider referrals to nutritionists for patients with SCD. Adequate sleep and exercise are also important for all patients to maintain general good health, which can help avoid pain crises. Finally, being involved in activities that educate others, including health care professionals, about SCD helped these patients feel more in control of their disease. Dr. Porter's work was supported by the Agency for Healthcare Research and Quality (T32 HS00078).
See "A qualitative analysis of best self-management practices: Sickle cell disease," by Drs. Tanabe and Porter, Melissa Creary, M.P.H., and others in the November 2010 Journal of the National Medical Association 102(11), pp. 1033-1041.