Thrombotic Thrombocytopenic Purpura (TTP) Patient Attitudes Regarding Depression Management: a Qualitative Study

Introduction: Recovery from an acute episode of TTP was previously thought to be complete except for a risk for relapse. However, the Oklahoma TTP-HUS Registry has documented that patients have multiple health problems that persist following recovery, including an increased prevalence of major depression (Blood122:2023;2013). Untreated major depression impacts daily functioning, quality of life and is a risk factor for suicide. Recognizing depression and establishing effective treatment should be a critical part of TTP follow-up care. The objective of our study was to identify TTP patient attitudes regarding treatments for depression.

Methods: The study was based on the theoretical framework of the Theory of Planned Behavior (TPB). The theory suggests that intention is the immediate predictor of behavior. Intention is determined by 3 factors: attitude toward a behavior, subjective norms, and perceived behavioral control. This study focused on attitude; therefore, patients were primarily asked if there were any advantages or disadvantages of treating depression with either pharmacotherapy or counseling.

One-on-one semi-structured interviews were conducted by the first author. Interviews were transcribed verbatim and content analysis was conducted by 3 qualitative researchers and facilitated by using the NVivo 10 software. A codebook was developed to guide the data analysis. Similar beliefs were grouped into themes and key ideas.

Patients: Registry patients whose initial episode was associated with severe ADAMTS13 deficiency (<10%), 1995-2012, and who had major depression on at least 1 screening evaluation from 2004-2012. Qualitative purposeful sampling was used instead of random sampling. Patients were stratified by previous/current or no pharmacotherapy treatment regardless of counseling history.

Results: Fifty-six ADAMTS13-deficient patients in clinical remission had been screened for depression; 50 patients were alive in 2013; 24 had a score of major depression at least once. Of the 24 patients, 12 (50%) had taken pharmacotherapy for their depression and 12 (50%) patients had never taken pharmacotherapy.

Data saturation was achieved after interviewing 16 patients (9 pharmacotherapy; 7 no pharmacotherapy). Fourteen patients (88%) were women, 9 (56%) were black, and the median age was 49 years (range 28-69). Patients were a median of 8.5 years from their most recent TTP episode (range 2-17 years), 5 (31%) had relapsed, and 7 (44%) had been treated with rituximab.

Interviews among all patients revealed that a TTP diagnosis was ‘life-altering’ and ‘traumatic’. Many patients felt the residual effects of TTP (a fear of relapsing, fatigue, and mild cognitive impairment) were related to their depression. A major theme across groups was that patients had a positive attitude toward counseling and believed counseling could be an effective way to treat depression. However, a history of a negative counseling experience seemed to discourage many patients from continuing counseling. Additionally, regardless of previous counseling experience, a key idea across groups was mistrust toward the mental healthcare provider’s ability. However, this mistrust was only a perception among those who had never tried counseling. Within the pharmacotherapy group, patients believed that medication was an effective way to treat depression; however, many patients reported side effects (feeling ‘sluggish’ and ‘not caring about anything’) as the reasons for stopping the medication. On the contrary, among the non-pharmacotherapy group patients were unsure if pharmacotherapy actually worked-‘Uh, I guess it kind of would keep you steady-minded I guess’. The fear of side effects and the fear of addiction were the biggest barriers among the non-pharmacotherapy group for using pharmacotherapy.

Conclusion:Hematologists need to recognize that TTP is a long-term life-altering diagnosis following recovery. Identifying and managing depression is a critical issue that can save lives. TTP patients seem to have a positive attitude toward counseling and a mixed attitude toward pharmacotherapy. Whether these fears are valid is beyond the scope of this study; however, it is imperative that hematologists discuss the issue of depression in depth with their patients and address the barriers to acceptance of treatment. This study is a first step in identifying barriers to depression treatment in TTP survivors.