Perception of the impact of fatigue on quality of life differs significantly between patients with immune thrombocytopenia (ITP) and physicians with clinical experience treating the disease, according to results of the ITP World Impact Survey (I-WISh), which were presented in a poster at the 2018 American Society of Hematology (ASH) Annual Meeting and Exposition.
I-WISh is a cross-sectional survey of patients with ITP and physicians experienced in its clinical management. Patients were recruited through their physicians and patient support groups, and physicians were recruited through local fieldwork agencies. The goal was to study the burden of ITP and its impact on quality of life using a global patient and physician sampling.
The I-WISh survey was designed and supported by a steering committee of expert physicians and patient advocacy ITP specialists. It was completed by 1491 patients from 12 countries (65% female, with a mean age of 47 years) and 472 physicians from 13 countries. Physicians had a mean ITP caseload of 34 patients and a mean of 18 new cases in the past year.
The most common patient-reported symptoms at diagnosis and at survey completion were petechiae, bruising, fatigue, and anxiety regarding platelet count stability. The most commonly reported symptoms among physicians at diagnosis and overall (at any stage) were petechiae, purpura, bleeding of the gums, and epistaxis.
Despite the similarity in commonly reported symptoms between patients and physicians, fatigue was under-reported by physicians, compared with patient responders: 30% at diagnosis and 31% overall vs 58% at diagnosis and 50% at survey completion.
Using a 7-point Likert scale, with 7 indicating “the worst imaginable severity,” patients rated fatigue as severe — a 5 or higher — at diagnosis (74%) and at survey completion (65%). Other symptoms reported as severe at diagnosis were heavy menstrual bleeding and anxiety regarding platelet count (84% and 78%, respectively), but fewer patients rated these as severe at survey completion (63% and 65%, respectively). Although uncommon, many patients also rated thrombosis as severe (62% at diagnosis and 74% at survey completion).