RESULTS OF POST-KATRINA NEEDS ASSESSMENT FOR PATIENTS WITH SICKLE CELL DISEASE AND CANCER.

Abstract

Purpose of the Study Patients with sickle cell disease (SSD) and cancer have special needs; continuity of care is necessary to ensure their continued well-being. Patients with these disorders treated at Children9s Hospital of New Orleans were surveyed to determine special needs identified by their experiences pre-/post-Katrina in 2005 and to identify measures that could be instituted to ensure care and continuity of care in similar disaster. Methods Used A post-Katrina needs assessment survey was administered to 84 patients attending clinics at the Children9s Hospital of New Orleans. HIPPAA requirements were met and parents/patients were assented prior to participation in the study. Summary of Results The ratio of males to females was ≈1:1. Respondents were 37% black, 55% white, and 4% Hispanic. Fifteen percent were SSD patients, whereas 53% were cancer patients (30% had other miscellaneous diseases). Most individuals stated that they had known their destination prior to leaving New Orleans with an evacuation plan. Seventy-seven percent left town; at the time of the survey, 79% were at their pre-Katrina location. No change in hospitalization or emergency room usage was reported post-Katrina, but parents9 overall perception was that their children were not as healthy as before Katrina. Distances for travel to clinic were greater post-Katrina. Sixty percent of those surveyed did not have any difficulty in getting health care during the evacuation period. Those who had difficulty gave the following reasons: inability to reach/find their New Orleans provider; lack of information about resources that were available; need for Web site information from their health care provider; and a lack of Social Services assistance. Sixty-nine percent reported emotional or psychological problems in their children post-Katrina, although not all had sought psychiatric attention. Supportive services identified as needed were transportation assistance, housing assistance, respite care for their children with health care needs, and assistance in finding health care providers in their new location. Conclusion The degree of need was perhaps not as great as expected for these patients having serious and at times chronic illnesses. Parents usually reported no discontinuity of care but did need supportive services, which might not have been available. Efforts are now being made to ensure that these needs are met in the event of a future catastrophic event.