PF714 PATIENT PERCEPTIONS ON SPLENECTOMY OUTCOMES: RESULTS FROM THE ITP WORLD IMPACT SURVEY (I‐WISH)
Authors: N. Cooper, C. Kruse, A. Kruse, M. Morgan, D. Provan, Y. Tomiyama, M. Michel, W. Ghanima, M. Hou, C. Santoro, B. Lovrencic, J. Waller, M. Stankovic, J.B. Bussel
Journal: HemaSphere (2019)

Background: Splenectomy is highly effective in 60–70% of patients (pts) with immune thrombocytopenia (ITP). However, as with other treatments, there are no consistent clinical predictors for success or potential complications. Second‐line treatment decisions, including splenectomy, have become more complicated with more options. More information on pts perceptions on splenectomy is needed. Aims: I‐WISh studied the burden of ITP and its impact on quality of life (QoL). Here, we report pts perceptions on splenectomy outcomes. Methods: I‐WISh is a cross‐sectional survey of 1507 ITP pts and 472 physicians across 13 countries; pts were recruited via physicians and patient advocacy groups (PAGs). Pts and physicians completed a 30‐min online survey that included demographics, signs and symptoms, impact of symptoms, and pt–physician relationships. A steering committee of expert physicians and PAG ITP specialists designed and endorsed the survey materials. Results: The physicians mean (SD) no. of ITP pts was 34 (50) with a mean (SD) of 18 (36) newly diagnosed pts in the past year. Physicians recommended splenectomy in 32% of pts with persistent, chronic, recurrent ITP. On average, 17% of pts (total n = 263; PAG, n = 197; physician invited, n = 66) underwent splenectomy. The pts mean age was 51 years and 46 years for those who did or did not undergo splenectomy, respectively. Pt‐perceived consequences across all countries were: regular immunizations (54%), increased infections (29%), carrying splenectomy card for travel (24%), pancreatic/stomach inflammation (16%), daily need for antibiotics (14%), frequent respiratory symptoms (12%), thrombosis (10%), sepsis/fever requiring ER visits (9%), and other (9%). One or more of these consequences was experienced by 78% of pts. Significant inter‐country variations were observed. In those who had received splenectomy, pts rated how much they agree with the statements of impact on their QoL, ie, scored ≥5 on a 7‐point Likert scale where 7 = strongly agree. Symptoms that pts were most interested to resolve included fatigue (48%) and anxiety surrounding unstable platelet count (26%). Overall satisfaction with the splenectomy outcomes was perceived by 38% of pts, although 15% of pts felt it was an undesirable treatment even though it worked. Splenectomy had been effective in treating the ITP symptoms in 36% of pts. However, 43% of pts regretted having undergone splenectomy because it did not work. For 25% of pts, splenectomy had caused other problems and they regretted having it. Amongst all responders, immunosuppressive effect was the top concern (60%), with 30% of pts being worried about the need for regular immunizations. Only 54% of pts felt they were made aware of the long‐term complications of splenectomy before surgery, and 56% of pts were worried about long‐term side effects. Concern about short‐term side effects, taking oral antibiotics after splenectomy, risk of septicemia, and risk of blood clots were raised by 32%, 23%, 37% and 32% of pts, respectively (Fig). Summary/Conclusion: Results highlighted the need for improved pt education on the potential adverse effects of splenectomy although there are limitations to this survey. Pts could have undergone splenectomy at any time prior to the survey explaining lack of awareness of long‐term complications. Pts in whom splenectomy was not successful or those who had post‐operative complications were more likely to continue to see their physician and/or be involved with PAGs (3/4 of responders to survey) and therefore participate in the survey than long‐term responders. image