title: Fear of disease progression questionnaire for parents: Psychometric properties based on a sample of caregivers of children and adolescents with cystic fibrosis.
abstract: BACKGROUND
  Parents caring for a child with a chronic somatic condition are at risk of increased distress and impaired quality of life. Fear of disease progression (FoP) is known to be an important source of distress in patients and their partners, and may be of relevance for parents as well. Existing measures are not applicable to parents. This study describes the adaptation of the FoP questionnaire for parental caregivers and investigated its psychometric properties.
  
  
  METHODS
  Sixteen items appropriate for parents were derived from existing measures and from interviews with clinical experts in family-oriented psychosocial care. Factor structure, internal consistency, validity and sensitivity to change were analyzed in a clinical sample of 162 caregivers (M(age)=42.07 years, SD=6.0 years, 87.8% female) of a child with cystic fibrosis.
  
  
  RESULTS
  The exploratory factor analysis reveal ed a two-factor structure, which was not supported by confirmatory analysis. Cronbach's α was examined for total score (.91) and significant positive correlations of the total score with anxiety (HADS: r=.70) and depression (CES-D: r=.60, BDI-II: r=.59), and a significant negative correlations with quality of life (r=-.66) could be demonstrated. A significant decrease in FoP was found (d=1.11) in a group of highly distressed caregivers undergoing web-based cognitive behavioral intervention.
  
  
  CONCLUSIONS
  The FoP questionnaire is a reliable and valid instrument for parents of children with CF. Further studies in larger samples are needed to clarify dimensionality and validity among parents of children with other chronic conditions.
authors: Department of Child and Adolescent Psychiatry/Psychotherapy, University of Ulm Medical Centre, Ulm, Germany. Electronic address: astrid.fidika@uniklinik-ulm.de.
authors: Astrid
authors: A
authors: Fidika
authors: Department of Child and Adolescent Psychiatry/Psychotherapy, University of Ulm Medical Centre, Ulm, Germany.
authors: Marion
authors: M
authors: Herle
authors: Roman-Herzog-Comprehensive Cancer Center, Klinikum rechts der Isar, Technische Universität München, Munich, Germany.
authors: Peter
authors: P
authors: Herschbach
authors: Department of Child and Adolescent Psychiatry/Psychotherapy, University of Ulm Medical Centre, Ulm, Germany.
authors: Lutz
authors: L
authors: Goldbeck
mesh_terms: D000293:Adolescent; D000328:Adult; D001007:Anxiety / Q000523:psychology*; D017028:Caregivers / Q000523:psychology*; D002648:Child; D003550:Cystic Fibrosis / Q000473:pathology / Q000523:psychology*; D018450:Disease Progression; D005239:Fear / Q000523:psychology*; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D010290:Parents / Q000523:psychology; D011594:Psychometrics; D011788:Quality of Life / Q000523:psychology*; D011795:Surveys and Questionnaires
keywords: Cystic fibrosis; Fear of progression; Parents