title: Measuring treatment satisfaction in patients with primary immunodeficiency diseases receiving lifelong immunoglobulin replacement therapy.
abstract: BACKGROUND
  Treatment satisfaction of patients with primary immunodeficiency diseases receiving hospital-based intravenous (IVIG) or home-based subcutaneous (SCIG) immunoglobulin infusions requires investigation.
  
  
  OBJECTIVE
  Evaluation of the properties and suitability of the Life Quality Index (LQI), as an instrument to assess treatment satisfaction.
  
  
  METHODS
  Patients received weekly SCIG and completed the LQI, two global treatment satisfaction questions and the CHQ-PF50 (children) or the SF-36 (adults) at baseline and 10 months. The LQI was psychometrically evaluated.
  
  
  RESULTS
  The LQI comprised four scales: treatment interference (I), therapy related problems (II), therapy setting (III), treatment costs (IV). Convergent/discriminant validity for scales I, II, III was acceptable, for scale IV moderate. CHQ-PF50 scales behavior, bodily pain, global behavior, global health, mental health, parental impact-emotion significantly correlated with LQI scale II, the family activity scale with LQI scales I, III. SF-36 scale bodily pain significantly correlated with scale III. Internal consistency was good for scales I, II, III, but poor for scale IV. Score values significantly increased for scales I, III, IV in patients switching from IVIG to SCIG.
  
  
  CONCLUSIONS
  Three valid LQI scales were determined. Cost-related questions should be removed due to low reliability. Patients-perceived therapy effectiveness and patient-physician/nurse interaction should be included in the instrument.
authors.affiliation: The Swedish Center for Immunodeficiencies, Department of Laboratory Medicine, Section of Clinical Immunology, Karolinska Institutet at Karolinska University Hospital, Stockholm, Sweden. uwe.nicolay@labmed.ki.se
authors.forename: U
authors.initials: U
authors.lastname: Nicolay
authors.forename: S
authors.initials: S
authors.lastname: Haag
authors.forename: F
authors.initials: F
authors.lastname: Eichmann
authors.forename: S
authors.initials: S
authors.lastname: Herget
authors.forename: D
authors.initials: D
authors.lastname: Spruck
authors.forename: A
authors.initials: A
authors.lastname: Gardulf
mesh_terms: D000293:Adolescent; D000328:Adult; D005260:Female; D006699:Home Care Services; D006760:Hospitalization; D006801:Humans; D007136:Immunoglobulins / Q000008:administration & dosage / Q000627:therapeutic use*; D007153:Immunologic Deficiency Syndromes / Q000188:drug therapy* / Q000523:psychology; D007262:Infusions, Intravenous; D007279:Injections, Subcutaneous; D008297:Male; D017060:Patient Satisfaction / Q000706:statistics & numerical data*; D011594:Psychometrics / Q000295:instrumentation*; D011788:Quality of Life; D018434:Sickness Impact Profile; D011795:Surveys and Questionnaires
chemical_list: D007136:Immunoglobulins