A support group for patients who have recovered from thrombotic thrombocytopenic purpura‐hemolytic uremic syndrome (TTP‐HUS): The six‐year experience of the Oklahoma TTP‐HUS Study Group

Abstract

A support group for patients who have recovered from thrombotic thrombocytopenic purpura‐hemolytic uremic syndrome (TTP‐HUS), named The Oklahoma TTP‐HUS Study Group, has been a successful program for 6 years. This group has met 3 times each year with an average attendance of 16 former patients; in addition, an average of 14 family members and friends have attended each meeting. Eighty‐four percent of patients who attended a meeting were women as compared to 68% women among those who did not attend (P = 0.016). Twenty‐three percent of patients who attended a meeting have relapsed as compared to 8% among those who did not attend (P = 0.006). There was also a difference in the rates of attendance among the different clinical categories of patients (P < 0.001). A survey of former patients, as well as their families and friends, documented that interest in learning more about TTP‐HUS and talking with other people who have had TTP‐HUS were principal motivations for attending the meetings. The meetings of The Oklahoma TTP‐HUS Study Group have been successful not only for support of former patients but also for research. Long‐term patient follow‐up has been facilitated and the group discussions have revealed previously unreported persistent problems with cognitive ability and endurance. A survey of member centers of the American Association of Blood Banks and America's Blood Centers revealed no similar programs for patients who have recovered from TTP‐HUS. The absence of a support group for TTP‐HUS in the national survey contrasts to the 274 patient support groups and related wellness/education classes, including some for rare disorders, currently active in the Oklahoma City metropolitan area. The experience of The Oklahoma TTP‐HUS Study Group suggests that it serves a previously unmet need. J. Clin. Apheresis 18:16–20, 2003.