PracticeUpdate Conference Series ASH 2018

Doctors Underestimate the Impact of Fatigue Related to Immune Thrombocytopenia Patients repeatedly report that fatigue has a major impact on their quality of life.

W hile perceptions of patients with immune thrombocytopenia (ITP) and the physicians who treat them are in alignment when it comes to the effect the overall disease symptom burden has on patient quality of life, those perceptions diverge when it comes to the issue of patient fatigue, according to new research. Specifically, in an international survey of patients and physicians, of the most com- mon signs and symptoms of ITP reported at diagnosis or at any stage of treatment, fatigue was substantially underreported by physicians compared with the percent- age of patients who reported fatigue as a symptom of their disease. I-WISh was a cross-sectional survey of 1,491 patients from 12 countries and 472 physicians from 13 countries that studied the burden of ITP and impact on patient quality of life. Participants completed a 30-minute online survey that included demographics, signs and symptoms, impact of symptoms, and patient–doctor relationships.

The researchers, led by Caroline Kruse of the Platelet Disorder Support Association in Cleveland, found that the most frequent patient-reported signs and symptoms mirrored those reported by physicians. For example, the most frequent symp- tom reported by patients and doctors at diagnosis was petechiae (65% and 83%, respectively). However, fatigue was underreported as a symptom by physicians when compared with patients (30% at diagnosis for phy- sicians compared with 58% for patients). When rating the severity of symptoms (on a 7-point Likert scale, with 7 = ‘the worst imaginable severity’), fatigue was one of the most severe patient-reported symp- toms, scoring ≥5 both at diagnosis (74%) and survey completion (65%). Heavy menstrual bleeding (reported by 84% at diagnosis and 63% at study completion) and anxiety around a sta- ble platelet count (78%; 65%) were also reported as severe, as was thrombosis, which while not common was considered severe (62%; 74%).

Patients considered heavy menstrual bleeding (75%, n=118/158), thrombosis (74%, n=25/34) and fatigue (73%, n=544/743) to be the symptoms they would most like to resolve. Physicians, on the other hand, perceived a number of signs and symptoms as hav- ing a higher impact on quality of life than fatigue (based on a 7-point Likert scale, with 7 = ‘a great deal’). For example, phy- sicians most often identified symptoms such as blood in urine/stool (81%), profuse bleeding during surgery (79%) and men- orrhagia (78%) as having the most impact on a patient’s quality of life, while just 59% believed fatigue has a high impact. And while 66% of physicians reported that ITP-related fatigue reduces quality of life, just 46% identified fatigue as severe (scored ≥5 on a 7-point Likert scale; 7 = ‘completely fatigued’). “The Platelets Disorder and Support Association has conducted numerous focus groups, and we have been told by the tens of thousands of ITP patients and caregivers we serve that debilitating fatigue is one of the most common and most severe patient-reported symptoms of ITP, and many patients say their fatigue is worse when their platelet count is low,” said Ms. Kruse in an interview with Elsevier’s PracticeUpdate . “We often hear from patients that doc- tors dismiss symptoms of fatigue as

" People with ITP regularly cite the stress and anxiety associated with watching their numbers. This all has a huge impact on quality of life, ability to work, go to school, travel, and just enjoy life. " PRACTICEUPDATE CONFERENCE SERIES • ASH 2018 12