Abstract

Idiopathic thrombocytopenic purpura (ITP) is an autoimmune condition characterized by autoantibody-mediated platelet destruction and suboptimal megakaryocytic production. Primarily acute (< 6 months) in duration among children, ITP manifests predominantly chronically among adults, increasing susceptibility to bleeding events.

Despite recent growth, published literature on health-related quality of life in ITP remains limited. The objective of our investigation was to identify lifestyle concerns associated with ITP among adult and pediatric patients in the United Kingdom.

In collaboration with ITP specialists, a 43 question, closed-field lifestyle survey was developed, addressing social engagement, work and school performance, sports and activities, treatment, and travel. Patient members of the United Kingdom ITP Support Association (N = 1,767) were asked to complete and return mailed surveys. Pearson’s chi-square and Fisher’s exact tests were used to evaluate differences in dichotomized variables between groups.

790 (45%) completed surveys were returned. As illustrated in the table below, roughly one-quarter of adults (≥ 16 years) and one-fifth of children reported ‘always’, ‘sometimes’, or ‘often’ missing school or work owing to fatigue and having encountered difficulty obtaining insurance. Nearly one-third of adults further revealed having an elective surgery delayed owing to a low platelet count.

Disparities were noted across gender with regard to bruise concealment (adults: p < 0.01; children: p = 0.03) and suspicions of subjection to violence (adults: p < 0.01; children: p = 0.49). In contrast with adults, pediatric patients reported being more likely to having requests for referral denied (p = 0.03).

This study represents the largest quality of life investigation of ITP to date. Although the survey utilized remains to be validated, its findings nonetheless successfully highlight avenues for future investigation.

  Subgroups: ‘Yes’ % 
  Adults Children 
Question Total ‘Yes’ % N = 790 Male N = 199 Female N = 497 Male N = 51 Female N = 43 
[1] Total number of responses recorded for the given question. 
Have you ever been unable to go to work or school because of tiredness and fatigue? 29%710[1] 26%
 186 31%
 435 20%
 49 30%
 40 
Have you had difficulty obtaining or been refused travel and life insurance? 29%
 611 30%
 540 18%
 71 
Have you ever had surgery (other than splenectomy for ITP) postponed or delayed because of a low platelet count? 30%
 620 34%
 158 30%
 391 13%
 39 19%
 32 
Do you try to hide your bruises? 29%
 756 10%
 190 37%
 475 20%
 50 42%
 41 
Are people ever suspicious that the bruises are a result of physical violence? 17%
 750 5%
 193 19%
 468 31%
 49 38%
 40 
Have you ever been refused a referral to an ITP specialist or hospital of 5%
 574 3%
 144 4%
 358 10%
 41 10%
 31 
  Subgroups: ‘Yes’ % 
  Adults Children 
Question Total ‘Yes’ % N = 790 Male N = 199 Female N = 497 Male N = 51 Female N = 43 
[1] Total number of responses recorded for the given question. 
Have you ever been unable to go to work or school because of tiredness and fatigue? 29%710[1] 26%
 186 31%
 435 20%
 49 30%
 40 
Have you had difficulty obtaining or been refused travel and life insurance? 29%
 611 30%
 540 18%
 71 
Have you ever had surgery (other than splenectomy for ITP) postponed or delayed because of a low platelet count? 30%
 620 34%
 158 30%
 391 13%
 39 19%
 32 
Do you try to hide your bruises? 29%
 756 10%
 190 37%
 475 20%
 50 42%
 41 
Are people ever suspicious that the bruises are a result of physical violence? 17%
 750 5%
 193 19%
 468 31%
 49 38%
 40 
Have you ever been refused a referral to an ITP specialist or hospital of 5%
 574 3%
 144 4%
 358 10%
 41 10%
 31 

Disclosures: Sarpatwari:GSK: Research Funding; Baxter: Honoraria. Provan:GSK: Equity Ownership, Honoraria, Membership on an entity’s Board of Directors or advisory committees, Research Funding; Baxter: Honoraria, Membership on an entity’s Board of Directors or advisory committees, Research Funding, Speakers Bureau; Amgen: Honoraria, Membership on an entity’s Board of Directors or advisory committees, Research Funding, Speakers Bureau. Newland:GSK: Honoraria, Membership on an entity’s Board of Directors or advisory committees, Research Funding; Baxter: Honoraria, Research Funding; Amgen: Honoraria, Membership on an entity’s Board of Directors or advisory committees, Research Funding.

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