RATIONALE: This study described the experiences of patients who received immunoglobulin replacement therapy (IgRT) as treatment for primary immunodeficiency disease (PIDD).
METHODS: A cross-sectional, observational study was conducted in the US among adults who self-reported PIDD and current IgRT use. Email invitations were sent to approximately 7400 Immune Deficiency Foundation members describing the study. Data were collected using a web-based survey that included demographic and clinical characteristic questions in addition to the Immunoglobulin Patient Experience with Treatment (IgPET) Questionnaire, Life Quality Index (LQI), and Treatment Satisfaction Questionnaire for Medication (TSQM-9) measures. IgPET subscales were scored 1–5, and TSQM-9 and LQI were 0–100, with higher scores indicating better treatment satisfaction. Descriptive statistics were calculated to define patients’ treatment experiences.
RESULTS: A total of 814 patients (male, n=128; female, n=683) completed the survey. Most patients received a PIDD diagnosis ≥5 years earlier (60%), were treated at home (74%), and received subcutaneous therapy (59%). IgPET subscale scores (mean, SD) were: convenience: 3.5, 0.8; control: 4.1, 0.7; and impacts and interference: 3.4, 0.8. TSQM-9 subscale scores (mean, SD) were: effectiveness: 71.3, 19.9; convenience: 68.0, 20.9; and global satisfaction: 79.7, 19.4. LQI subscale scores (mean, SD) were: treatment interference: 76.2, 18.0; therapy-related problems: 71.0, 18.5; and therapy settings: 85.6, 16.7. To obtain additional insight, results were stratified by mode of administration (subcutaneous, intravenous) and treatment location (home, other).
CONCLUSION: Several survey measures showed that patients with PIDD had a relatively favorable experience regarding IgRT.
