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

Abstract

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.

Survival after acute episodes of immune-mediated thrombotic thrombocytopenic purpura (iTTP) – cognitive functioning and health-related quality of life impact: a descriptive cross-sectional survey of adults living with iTTP in the United Kingdom

“…Overall, our survey participants met HADS criteria for moderate anxiety and depression, with scores comparable to previous studies in other diseases considered to be similar to iTTP in symptomology (Guillain-Barré syndrome, stroke or sepsis) [32,33]. Evidence suggests that the prevalence of depression among adults with iTTP is much higher than healthy controls [26,31] and European and US population norms [10,15,26,30], after controlling for certain demographics. Alwan et al, also showed that self-reported depression and anxiety existed regardless of neurological symptoms [29].…”

“…The majority of survey participants reported frequent interference in family, social life, and work. These findings add to previous qualitative research illustrating the inter-relationships between HRQoL concepts; participants described how the inability to do normal activities and socialize led to isolation and feelings of worthlessness, and fear of infection from others led people to self-isolate [31].…”

“…Due to the nature of our cross-sectional study design, the reports of depression and anxiety cannot be attributed directly to iTTP, as any symptoms prior to diagnosis were unknown. However, in previous qualitative research involving people with iTTP and depression, only 31% reported a mental health diagnosis prior to disease onset, and they described how acute episodes had contributed to psychological distress [31]. Furthermore, it is plausible to assume that the fear of relapsing expressed by a large proportion of our survey respondents would contribute to higher anxiety.…”

“…Another cross-sectional survey of patients with TTP found that approximately one-third screened positive for possible PTSD [27], suggesting patients with iTTP may experience multiple psychological co-morbidities. Adults with iTTP have described the terror and fear of dying during an acute episode and expressed the belief that surviving had changed them mentally and physically, due to fatigue and cognitive difficulties [31]. Researchers have recommended the administration of annual screening for depression and cognitive function among adults who are in remission from iTTP and improved pathways to psychological or pharmacological interventions [15,26], and we argue that this should also include consideration of PTSD.…”

Influence of Personality, Resilience and Life Conditions on Depression and Anxiety in 104 Patients Having Survived Acute Autoimmune Thrombotic Thrombocytopenic Purpura

“…The prevalence of major depression in our iTTP patients was 21.6% and 34.5% for 2015 and 2016, respectively, far above the prevalence in our population controls (4.6%) and the reported 12-month prevalence in the German population (9.3%) [ 28 ]. These results are consistent with our previous findings [ 10 ] and with other studies showing a significantly increased point prevalence of depression from 19% up to 65% in iTTP survivors [ 6 , 8 , 9 , 29 , 30 ]. A strong association between chronic physical illness and depression has been reported [ 15 , 31 ].…”