262 Fear of Progression Questionnaire for caregivers of youth with cystic fibrosis (FoP-Q/C)

Abstract

Objectives: Fear of disease progression (FoP) in parental caregivers of minors with cystic fibrosis (CF) is associated with distress and adherence to treatment. Measures for FoP are available for adult patients and their partners, but so far not applicable for caregivers. We developed a caregiver form of the questionnaire to apply for parental caregivers and investigated its psychometric properties. Methods: Sixteen items were derived from the existing versions of the questionnaire and from interviews with clinical experts in family-oriented psychosocial care. Psychometric properties were tested in a sample of 50 caregivers (M = 38.4 years; SD = 6.72; 86% female) being interested to participate in a web-based psychotherapy for highly distressed caregivers of minors with CF. Internal consistency and convergent validity to other measures of distress (anxiety, depression) as well as divergent validity (parental quality of life) and sensitivity for change were investigated. Results: Internal consistency was indicated by Cronbach's a = 0.88, split-half reliability r = 0.82 and odd-even reliability r = 0.92. Moderate positive correlations with anxiety (r = 0.51; p<0.01) and depression (r = 0.57; p<0.01) were found, as well negative moderate correlations to quality of life (r = -0.54; p<0.01). A subgroup of 23 participants receiving the web-based cognitive behavioural intervention showed a significant decrease of FoP-score (d = 1.11). Conclusion: The preliminary psychometric results indicate excellent reliability and validity, as well as sensitivity to change. The instrument allows the assessment of FoP in clinical care and research. Further validation in larger samples is recommended.