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.
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.
Howard
Mark A
MA
Hematology-Oncology Section, Department of Medicine, College of Medicine, The University of Oklahoma Health Sciences Center, Oklahoma City 73190, USA.
Duvall
Deanna
D
Terrell
Deirdra R
DR
Christopher
Anne T
AT
Thomas
Ira
I
Holloway
Natalie
N
Vesely
Sara K
SK
George
James N
JN
D000328:Adult; D005260:Female; D006463:Hemolytic-Uremic Syndrome / Q000523:psychology*; D006801:Humans; D033181:Information Dissemination; D008297:Male; D008875:Middle Aged; D017060:Patient Satisfaction; D011697:Purpura, Thrombotic Thrombocytopenic / Q000523:psychology*; D012657:Self-Help Groups / Q000458:organization & administration*; D011795:Surveys and Questionnaires