Thrombotic thrombocytopenic purpura patients' attitudes toward depression management: A qualitative study

BACKGROUND AND AIMS: Thrombotic thrombocytopenic purpura (TTP) is a rare disorder characterized by acute episodes of systemic microvascular thrombosis; TTP is more common in adults, women, and African‐Americans (Blacks). Our Oklahoma TTP Registry documented that survivors have an increased prevalence of depression compared with the general population; however, many patients' depression remains untreated. Moreover, studies identifying attitudes toward depression management are lacking. The objective of this study was to identify TTP patients' attitudes towards pharmacotherapy. As a secondary question, we explored attitudes towards counseling. METHODS: We interviewed TTP patients with major depression who had experience with different management strategies (previous/current pharmacotherapy treatment versus no pharmacotherapy treatment). Eligibility criteria included (a) age > 18 years, (b) ADAMTS13‐deficient TTP, (c) enrolled in the Oklahoma Registry, and (d) moderate/major depression on either the Beck Depression Inventory II or Patient Health Questionnaire from 2004 to 2012. Qualitative purposive sampling was used to interview patients with a range of experiences with TTP and depression symptom management. Our study was based on the theoretical framework of the Theory of Reasoned Action. Patients were asked about their views on depression (attitudes), their family and friends' views (social norms), and ways they cope with depression. RESULTS: Semi‐structured interviews were conducted between June and October 2013. Data saturation was achieved after interviewing 16 patients (nine, pharmacotherapy and seven, no pharmacotherapy). The majority (88%) were women; 56% were Black, and the median age was 49 years. Patients in both groups believed TTP was life altering and traumatic and that counseling improved depressive symptoms. However, the pharmacologic group believed medication improved one's quality of life, whereas the no pharmacotherapy group was not sure pharmacotherapy was effective and expressed fears related to potential addiction and side effects. When asked about cultural views to depression management, many Black patients stated that in the Black community, a person is taught to deal with his/her emotional issues instead of asking strangers for help. CONCLUSION: Ensuring effective depression management is a critical part of TTP care. Understanding attitudes toward management will assist in tailoring patient discussions.