Understanding why patients with immune thrombocytopenia are deeply divided on splenectomy

BACKGROUND: Splenectomy is an effective treatment for chronic immune thrombocytopenia (ITP); however, patients' willingness to accept splenectomy is variable. OBJECTIVE: To explore why some ITP patients accepted splenectomy when recommended by their physician while others refused. DESIGN: Qualitative descriptive study using one-to-one, in-depth patient interviews and a team-based approach to thematic analysis. RESULTS: Of 25 patients interviewed, 15 refused splenectomy and 10 accepted and were awaiting surgery. Themes about the influences on splenectomy decision making that emerged from patient interviews were (i) the perceived impact of ITP on quality of life, (ii) patients' view of splenectomy as a last resort treatment, (iii) patients' interpretations of the rates of treatment success and failure and (iv) a perceived lack of familiarity about ITP. Patients who accepted splenectomy perceived their disease as having a negative impact on their quality of life, whereas patients who refused felt their situation was not severe enough to warrant surgery. Patients developed their own experiential interpretations of the success rates of splenectomy quoted to them. A general lack of awareness of the clinical impact of ITP and its cause was identified by patients as barriers to choosing splenectomy. CONCLUSIONS: Patients' disease experience, perceptions of the lack of treatment alternatives, interpretations of treatment success and failure rates and a general lack of awareness about ITP influenced treatment choice. This study represents a first step towards contextualizing treatment decision making in ITP, focusing on patient preferences and values.