title: 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.
abstract: 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.
  
  
  
  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).
  
  
  
  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.
  
  
  
  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.
authors.affiliation: Medical College of Wisconsin and the Children's Research Institute, Milwaukee, WI, USA. jroutes@mcw.edu.|Section of Allergy and Clinical Immunology, Department of Pediatrics, Medical College of Wisconsin, 9000 W. Wisconsin Ave., Milwaukee, WI, 53226-4874, USA. jroutes@mcw.edu.
authors.forename: John
authors.initials: J
authors.lastname: Routes
authors.affiliation: Universidade Federal de Sao Paulo, Sao Paulo, Brazil.
authors.forename: Beatriz Tavares
authors.initials: BT
authors.lastname: Costa-Carvalho
authors.affiliation: Institute of Immunity & Transplantation, Royal Free Hospital, University College London, London, UK.|Center for Chronic Immunodeficiency, University Hospital Freiburg, Freiburg im Breisgau, Germany.
authors.forename: Bodo
authors.initials: B
authors.lastname: Grimbacher
authors.affiliation: LSU Health Sciences Center, Children's Hospital New Orleans, New Orleans, LA, USA.
authors.forename: Kenneth
authors.initials: K
authors.lastname: Paris
authors.affiliation: Seattle Children's Research Institute and University of Washington, Seattle, WA, USA.
authors.forename: Hans D
authors.initials: HD
authors.lastname: Ochs
authors.affiliation: Cincinnati Children's, Cincinnati, OH, USA.
authors.forename: Alexandra
authors.initials: A
authors.lastname: Filipovich
authors.affiliation: Medical College of Wisconsin and the Children's Research Institute, Milwaukee, WI, USA.
authors.forename: Mary
authors.initials: M
authors.lastname: Hintermeyer
authors.affiliation: Universidade Federal de Sao Paulo, Sao Paulo, Brazil.|Center for Chronic Immunodeficiency, University Hospital Freiburg, Freiburg im Breisgau, Germany.
authors.forename: Karina Mescouto
authors.initials: KM
authors.lastname: de Melo
authors.affiliation: The Royal Free London NHS Foundation Trust, London, UK.
authors.forename: Sarita
authors.initials: S
authors.lastname: Workman
authors.affiliation: Baxalta US, Inc, Cambridge, MA, USA.
authors.forename: Diane
authors.initials: D
authors.lastname: Ito
authors.affiliation: Baxalta US, Inc, Bannockburn, IL, USA.
authors.forename: Xiaolan
authors.initials: X
authors.lastname: Ye
authors.affiliation: Baxalta US, Inc, Bannockburn, IL, USA.
authors.forename: Patrick
authors.initials: P
authors.lastname: Bonnet
authors.affiliation: Baxalta US, Inc, Cambridge, MA, USA.
authors.forename: Josephine
authors.initials: J
authors.lastname: Li-McLeod
mesh_terms: D000328:Adult; D002648:Child; D002675:Child, Preschool; D005260:Female; D006295:Health Resources; D006801:Humans; D016756:Immunoglobulins, Intravenous / Q000627:therapeutic use; D007153:Immunologic Deficiency Syndromes / Q000188:drug therapy / Q000453:epidemiology*; D007223:Infant; D007231:Infant, Newborn; D008297:Male; D008875:Middle Aged; D010342:Patient Acceptance of Health Care; D011788:Quality of Life; D011795:Surveys and Questionnaires
chemical_list: D016756:Immunoglobulins, Intravenous
keywords: Primary immunodeficiency; antibody deficiency; health resource utilization, short form health survey (SF-36); health-related quality of life; pediatric quality of life inventory (PedsQL)