title: Perceived Health in Patients with Primary Immune Deficiency.
abstract: OBJECTIVE
  Perceived health (PH) is a subjective measure of global health of individuals. While many studies have evaluated outcomes in patients with primary immune deficiency (PID), published literature evaluating PH among patients with PID is sparse. We evaluated the results of the largest self-reported survey of patients with PID to determine the factors that may contribute to differences in PH.
  
  
  METHODS
  Data from a National Survey of Patients with Primary Immune Deficiency Diseases conducted by the Immune Deficiency Foundation was studied. Multivariate logistic regression was employed for data analysis.
  
  
  RESULTS
  Thirty percent of the patients perceived their health status as excellent or very good (EVG), 31 % as good (G), and 39 % as fair, poor or very poor (P). Older patients were less likely to have EVG-PH compared to G-PH. Ones with college degrees were more likely to have P-PH compared to G-PH, and less likely to have EVG-PH. Patients who were acutely ill and hospitalized in the past 12 months, ones with limited activity, and chronic diseases, were more likely to have P-PH compared to G-PH. Patients with "on demand" access to specialty care and ones on regular IVIG had higher OR of having EVG-PH as opposed to G-PH. Patients cared for mostly by an immunologist were less likely to have P-PH compared to G-PH.
  
  
  CONCLUSIONS
  Our results emphasize the importance of PH in clinical practice. We suggest that recognizing the factors that drive PH in patients with PID is important for the development of disease prevention and health promotion programs, and delivery of appropriate health and social services to individuals with PID.
authors.affiliation: Department of Pediatrics, Section of Immunology, Allergy and Rheumatology, Baylor College of Medicine and Texas Children's Hospital, 1102 Bates Ave. Suite 330, Houston, TX, 77030, USA. filizo@bcm.edu.
authors.forename: Filiz Odabasi
authors.identifier: http://orcid.org/0000-0001-5975-4550
authors.initials: FO
authors.lastname: Seeborg
authors.affiliation: The University of Texas Health Science Center, School of Public Health, Houston, TX, USA.
authors.forename: Roann
authors.initials: R
authors.lastname: Seay
authors.affiliation: Immune Deficiency Foundation, Towson, MD, USA.
authors.forename: Marcia
authors.initials: M
authors.lastname: Boyle
authors.affiliation: Immune Deficiency Foundation, Towson, MD, USA.
authors.forename: John
authors.initials: J
authors.lastname: Boyle
authors.affiliation: Immune Deficiency Foundation, Towson, MD, USA.
authors.forename: Christopher
authors.initials: C
authors.lastname: Scalchunes
authors.affiliation: Department of Pediatrics, Section of Immunology, Allergy and Rheumatology, Baylor College of Medicine and Texas Children's Hospital, 1102 Bates Ave. Suite 330, Houston, TX, 77030, USA.
authors.forename: Jordan Scott
authors.initials: JS
authors.lastname: Orange
mesh_terms: D000293:Adolescent; D000328:Adult; D000367:Age Factors; D004522:Educational Status; D005260:Female; D006297:Health Services Accessibility / Q000706:statistics & numerical data*; D006304:Health Status; D006760:Hospitalization / Q000706:statistics & numerical data*; D006801:Humans; D016756:Immunoglobulins, Intravenous / Q000627:therapeutic use; D007153:Immunologic Deficiency Syndromes / Q000453:epidemiology* / Q000628:therapy; D008297:Male; D008875:Middle Aged; D009043:Motor Activity; D011314:Preventive Health Services; D058996:Quality Improvement; D014481:United States; D055815:Young Adult
chemical_list: D016756:Immunoglobulins, Intravenous
keywords: Perceived health; health status; health survey; immunoglobulin; primary immune deficiency