Health-Related Quality of Life and Health Resource Utilization in Patients with Primary Immunodeficiency Disease Prior to and Following 12 Months of Immunoglobulin G Treatment

• Published in: Journal of clinical immunology Vol. 36; no. 5; pp. 450 - 461
• Main Authors: Routes, John, Costa-Carvalho, Beatriz Tavares, Grimbacher, Bodo, Paris, Kenneth, Ochs, Hans D., Filipovich, Alexandra, Hintermeyer, Mary, de Melo, Karina Mescouto, Workman, Sarita, Ito, Diane, Ye, Xiaolan, Bonnet, Patrick, Li-McLeod, Josephine
• Format: Journal Article
• Language: English
• Published: New York Springer US 01.07.2016; Springer Nature B.V
• Subjects: Adult; Biomedical and Life Sciences; Biomedicine; Child; Child, Preschool; Female; Health Resources; Humans; Immunoglobulins, Intravenous - therapeutic use; Immunologic Deficiency Syndromes - drug therapy; Immunologic Deficiency Syndromes - epidemiology; Immunology; Infant; Infant, Newborn; Infectious Diseases; Internal Medicine; Male; Medical Microbiology; Middle Aged; Original; Original Article; Patient Acceptance of Health Care; Quality of Life; Surveys and Questionnaires; antibody deficiency; health-related quality of life; health resource utilization, short form health survey (SF-36); pediatric quality of life inventory (PedsQL); Primary immunodeficiency
• ISSN: 0271-9142; 1573-2592
• DOI: 10.1007/s10875-016-0279-0

Purpose Health-related quality of life (HRQOL) has not been examined in patients with predominant antibody deficiency both pre- and post-immunoglobulin G (IgG) treatment initiation. HRQOL and health resource utilization (HRU) were assessed in newly diagnosed patients with primary immunodeficiency disease (PIDD) pre- and 12 months post-IgG treatment initiation. Methods Adults (age ≥18 years) completed the 36-item Short Form Health Survey, version 2; pediatric patients (PP)/caregivers completed the Pediatric Quality of Life Inventory (PedsQL). Scores were compared with normative data from the US general population (GP) and patients with other chronic conditions (OCC). Results Seventeen adult patients (APs), 8 PPs, and 8 caregivers completed baseline assessments. APs had significantly lower baseline mean physical component summary scores versus GP (37.4 vs 50.5, p  < 0.01) adults with chronic back pain (44.1, p  < 0.05) or cancer (44.4, p  < 0.05) and lower mental component summary scores versus GP (41.6 vs 49.2, p  < 0.05). PPs had lower PedsQL total (63.1 vs 82.7), physical summary (64.5 vs 84.5), and psychosocial summary (62.5 vs 81.7) scores versus GP. Post-IgG treatment, 14 APs, 6 PPs, and 8 caregivers completed assessments. Hospital admissions (0.2 versus 1.8, p  < 0.01), serious infections (3.3 versus 10.9, p  < 0.01) and antibiotic prescriptions (3.0 versus 7.1; p  < 0.01) decreased significantly overall. While APs reported significant improvement in role-physical ( p  = 0.01), general health ( p  < 0.01), and social functioning ( p  = 0.02) and caregivers in vitality ( p  < 0.01), PPs did not. Conclusions Pre-IgG treatment, patients with PIDD experienced diminished HRQOL versus GP and patients with OCC; post-treatment, HRU decreased and certain HRQOL aspects improved for APs and caregivers.