STOCKHOLM—A new survey has revealed patients’ perceptions of immune thrombocytopenia (ITP) and how the condition impacts their quality of life (QOL).
Patients reported delays in diagnosis, lack of support, severe fatigue, and impacts on both emotional well-being and their ability to work.
Interim results of this survey, the ITP World Impact Survey (I-WISh), were presented in a poster (abstract PF654) at the 23rd Congress of the European Hematology Association (EHA).
I-WISh is a cross-sectional survey of ITP patients developed by global ITP experts, patient groups, and Novartis.
Interim results of the survey included patients from 12 countries (Canada, China, Colombia, France, Germany, Italy, India, Japan, Spain, Turkey, UK, and US) who completed an online questionnaire beginning in January 2018.
As of May 14, 2018, 1400 adults (age 18 and older) had completed the survey. Sixty-five percent were female, and they had a mean age of 47.1 years. The patients’ mean length of time with ITP was 110 months.
Most patients (63%) reported a high score for their current health state (5 to 7 on the Likert scale), but 15% reported a low score (1-3).
Most patients were working full-time (45%) or part-time (16%) at the time of the survey. Nineteen percent were retired, 6% were homemakers, 4% were students, and 10% were not seeking employment, on long-term sick leave or disability, or “other.”
Twenty-two percent of all patients (307/1400) felt they had a delay in their ITP diagnosis caused by waiting for additional tests (49%, 150/307) or referral to a specialist (37%, 114/307).
Three-quarters of patients with a perceived delay (229/307) were anxious throughout diagnosis.
And 66% of all patients (927/1400) wanted more support during their diagnosis.
Patients reported fatigue as one of the most severe symptoms at diagnosis (75%, 627/839) and at survey completion (66%, 480/722).
The other “most severe” symptoms at diagnosis were heavy menstrual bleeding (85%, 353/416) and anxiety surrounding unstable platelet count (78%, 382/487). The other “most severe” symptoms at survey completion were thrombosis (73%, 24/33) and anxiety surrounding unstable platelet count (66%, 284/431).
“Severe fatigue, in particular, was reported by many patients as the most difficult-to-manage symptom of ITP,” said study investigator Nichola Cooper, MD, of Hammersmith Hospital, Imperial College London, in the UK.
“This is an important message for healthcare providers treating patients with this rare disease. ITP is about more than bruising and risk of bleeding.”
Forty-four percent of respondents (611/1398) said ITP impacted their energy levels more than half the time, and 36% (501/1398) said ITP had a negative impact on their normal capacity to exercise more than half the time.
Half of all patients (697/1400) said ITP had a high impact on their emotional well-being.
Eighty-three percent (1157/1400) said they felt a stable and safe platelet count was important, 64% (900/1400) worried that their condition will get worse, and 63% (888/1400) were concerned that their platelet count changes for no apparent reason.
Thirty-seven percent of all patients (511/1400) had reduced their work hours because of ITP, 37% (522/1400) seriously considered reducing their hours, and 21% (294/1400) considered terminating their employment.
Thirty-five percent of patients (491/1400) said obtaining healthy blood counts was their most important treatment goal. Twenty-one percent (299/1400) said increasing their energy levels was most important, and 15% (203/1400) said reducing spontaneous bleeds/bruising was most important.