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 ¼ 0.016). Twenty-three percent of patients who attended a meeting have relapsed as compared to 8% among those who did not attend (P ¼ 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.

Depression and cognitive impairment following recovery from thrombotic thrombocytopenic purpura

“…(5) Although our patients had no apparent gross neurologic deficits and they were performing their normal daily activities with a high level of function, their cognitive impairment was clearly noticeable both by themselves and their families. (2;3) The magnitude of cognitive function in our patients was not associated with the duration since their initial episode of TTP, the occurrence of previous relapses or with the occurrence of severe ADAMTS13 deficiency (activity <10%) during remission. Even though we could not document an association between cognitive impairment and depression in our patients, cognitive impairment may contribute to risk for depression.…”

“…(2;3) An unexpected outcome was that our patients helped us understand their long-term outcomes. Although our patients had returned to their normal activities and occupations, they and their families reported an incomplete return to their normal mental and physical functioning.…”

Living with pulmonary artery hypertension: Patients’ experiences

“…They commented on the importance of knowing that another patient was having similar experiences and that someone understood what was happening to them. Although this is one of the primary reasons that patients seek out support groups, 30-32 other reasons include education on their illness, 28,30,31 socialization, and emotional support. 31,32 Although participants in our study did not identify benefits of support except being comforted by the knowledge that they were not different than others with a similar problem, positive effects on coping, confidence, outlook, and relationships have also been reported.…”

How I treat patients with thrombotic thrombocytopenic purpura: 2010

“…For the past 14 years, we have had regular meetings for our former patients. 59,60 At these meetings, the consistent concern has been the patients' impression that their recovery has been incomplete. They have trouble concentrating, seem more forgetful, and have less endurance.…”