Session: 311. Disorders of Platelet Number or Function: Poster II
Hematology Disease Topics & Pathways:
Biological, Adult, Diseases, Bleeding and Clotting, Non-Biological, Therapies, Combinations, ITP, Study Population, Clinically relevant
Aims: The I-WISh cross-sectional survey assessed the burden of ITP and its impact on QoL using a global pt and physician (MD) sampling frame which explored the relationship between ITP symptoms, including anxiety and depression, and pt-reported emotional outcomes, as well as impact of treatment.
Methods: Pts were recruited via MDs and pt advocacy groups (PAGs). The survey captured demographics, signs and symptoms, impact of symptoms, and pt–MD relationships. A steering committee of expert MDs and PAG ITP specialists designed and endorsed the survey. ITP emotional impact on pts was evaluated based on pt agreement with emotional concern statements (on a 7-point Likert scale, where 7 = strongly agree). Scores of 5-7 were banded to indicate agreement unless stated otherwise.
Results: 1507 pts from 13 countries completed the survey; mean pt age was 47 yrs and 65% were female. 49% of pts felt ITP had majorly impacted their emotional wellbeing. Pts’ main worries were platelet count fluctuations occurring for no apparent reason (63%) and disease worsening (63%); in addition, 41% of pts worried about dying.
Pts who worried greatly about dying, about their ITP worsening, and about an unstable platelet count had similar ages and slightly shorter duration of disease compared with those who did not worry greatly (6-8 vs 10-12 yrs, respectively).
Anxiety surrounding platelet count, petechiae, depression, and fatigue were more frequent in those pts who worried greatly about dying vs those who did not. Pts who worried greatly about disease worsening reported varied ITP symptoms more frequently than those who did not, with the largest differences observed for unstable platelet count, fatigue, and petechiae. The same symptoms were also more frequently reported by those pts who worried greatly about unstable platelet count compared with those who did not (Fig. 1).
Across each of the 3 pt populations who worried greatly about dying, disease worsening, and unstable platelet count, females reported a higher number of moderate-to-severe headaches and more frequent anxiety surrounding unstable platelet counts than males. Among pts who worried greatly about disease worsening and unstable platelet counts, fatigue was more prevalent in females vs males (differences > 10%). A smaller difference was observed among those pts who worried greatly about dying (59% vs 54%).
Pts who responded ‘worry about disease worsening’ and ‘anxiety around platelet counts’ ≤ 2 were more likely than those who responded ≥ 6 to have a platelet count > 100 × 103/µL (31% vs 22% and 36% vs 22%, respectively).
Pts who responded ‘worry about dying’ ≥ 6 were more likely than those ≤ 2 to be receiving corticosteroids (CSs) at the point of data capture (40% vs 20%). Pts on thrombopoietin receptor agonists rated all 3 statements either ≥ 6 or ≤ 2 with similar frequency.
Conclusion: Anxiety/worry around unstable platelet counts and disease worsening were among the most common emotional concerns. Fatigue was the most commonly reported symptom, regardless of other emotional concerns, and was greater among females as were headaches. Pts with high emotional burden experienced most ITP symptoms more frequently compared with those who did not worry greatly. The notably high % of pts who worried about dying reflects the profound emotional impact of ITP and which may be exacerbated by CSs.
This abstract has been previously presented at the 25th Congress of the European Hematology Association (EHA), Virtual Congress, June 11-21, 2020.
Disclosures: Cooper: Novartis: Honoraria, Speakers Bureau; Amgen: Honoraria, Speakers Bureau. Ghanima: Amgen: Honoraria, Speakers Bureau; Principia: Honoraria, Speakers Bureau; Bristol Myers Squibb: Research Funding; Pfizer: Honoraria, Research Funding, Speakers Bureau; Novartis: Honoraria, Speakers Bureau; Bayer: Research Funding. Kruse: Principia: Other: Grant paid to PDSA; Argenx: Other: Grant paid to PDSA; Amgen: Other: Grant and honorarium, all paid to PDSA; Novartis: Other: PDSA received payment for recruiting patients to I-WISh and for promoting I-WISh on the globalitp.org website. Grant and consultancy fee, all paid to PDSA outside the submitted work; CSL Behring: Other: Grant paid to PDSA; UCB: Other: Grant and consultancy fee, all paid to PDSA; Rigel: Other: Grant paid to PDSA; Pfizer: Other: Grant and consultancy fee, all paid to PDSA. Tomiyama: Novartis: Consultancy, Honoraria; Kyowa Kirin: Honoraria; Sysmex: Consultancy. Provan: ONO Pharmaceutical: Consultancy; MedImmune: Consultancy; UCB: Consultancy; Amgen: Honoraria, Research Funding; Novartis: Honoraria, Research Funding. Santoro: Takeda: Honoraria, Speakers Bureau; Amgen: Honoraria, Speakers Bureau; Novartis: Honoraria, Speakers Bureau; Novo Nordisk: Honoraria, Speakers Bureau; Bayer: Honoraria, Speakers Bureau; CSL Behring: Honoraria, Speakers Bureau; Roche: Honoraria, Speakers Bureau; Sobi: Honoraria, Speakers Bureau. Morgan: Sobi: Other: Consultancy fees paid to the ITP Support Association; Novartis: Other: Consultancy fees paid to the ITP Support Association; UCB: Other: Consultancy fees paid to the ITP Support Association. Lovrencic: Novartis: Other: Honorarium paid to AIPIT; UCB: Other: Consultancy fees paid to AIPIT. Bailey: Novartis: Other: Employee of Adelphi Real World, which has received consultancy fees from Novartis; Adelphi Real World: Current Employment. Haenig: Novartis: Current Employment. Bussel: Novartis: Consultancy; Amgen: Consultancy; Shionogi: Consultancy; RallyBio: Consultancy; Momenta: Consultancy; Dova: Consultancy; 3SBios: Consultancy; Regeneron: Consultancy; Principia: Consultancy; Argenx: Consultancy; UCB: Consultancy; CSL Behring: Consultancy; Rigel: Consultancy.
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