Impact of corticosteroid-related symptoms in patients with immune thrombocytopenic purpura : results of a survey of 985 patients

BACKGROUND: Corticosteroid (CS) therapy is effective in many patients with immune thrombocytopenic purpura (ITP), although it is associated with adverse effects. OBJECTIVE: This study was conducted to describe the CS-related symptom experience of adult patients with ITP and to compare the symptom experience of current users of CS, previous users of CS, and those who have never used CS. METHODS: In 2006, adult members of the Platelet Disorder Support Association (PDSA) who were listed in the organization's database, resided in the United States, and had a diagnosis of ITP were invited to participate in a Web-based survey. Symptom experience was assessed using 33 CS-related symptoms derived from a scale developed for use in patients undergoing organ transplantation. Symptom experience over the past 4 weeks was measured in terms of the occurrence of symptoms (rated on a 5-point scale from 1 [never occurring] to 5 [always occurring]) and the distress associated with those symptoms (rated on a 5-point Likert scale from 0 [not at all distressing] to 4 [extremely distressing]). Respondents were categorized according to 4 patterns of CS use: current users, nonusers, previous users who stopped CS use or=6 months earlier. RESULTS: The survey was completed by 985 patients with ITP (8.2% of the PDSA membership). The median age of the sample was 47 years, and the ratio of women to men was 3:1. One hundred sixteen patients (11.8%) were current CS users, 171 (17.4%) were nonusers, 99 (10.1%) had stopped CS use or=6 months earlier. In all 4 groups, back pain, fatigue, sleep difficulties, muscle weakness, and difficulty seeing well were reported to be the most frequently occurring and most distressing symptoms. Current CS users and those who stopped CS treatment or=6 months earlier. Symptom occurrence was significantly greater for current users compared with those who stopped CS use or=6 months earlier (q or=6 months earlier compared with nonusers were buffalo hump and bruise (q or=6 months earlier (both, q = 0.047). Current users also reported significantly greater distress than nonusers for puffy face and excessive appetite (both, q = 0.047). Changed facial features was significantly more distressing in current users compared with those who had stopped CS use <or=6 months earlier (q = 0.047). CONCLUSIONS: Different symptom profiles emerged based on the pattern of CS use. Patients who were currently using CS or who had stopped CS treatment >6 months earlier reported more symptoms than did patients who had never received CS or who had stopped CS treatment =6 months earlier.