Fear of progression in parents of children with cancer: adaptation of the Fear of Progression Questionnaire and correlates

Abstract

Fear of Progression (FoP), the fear of further disease progression, is one of the most common psychological strains of chronically ill patients and can also be found in healthy partners of cancer patients. Parents of children with cancer are also at risk of developing distinct fears that may persist after medical treatment. This study aimed to assess FoP in parents of children with cancer and to investigate relationships between FoP in parents of children with cancer and disease- and treatment-related issues, the child's current medical condition and parents' quality of life. In this study 76 parents (51 mothers, 25 fathers) whose children were in inpatient treatment or follow-up care were surveyed. The short form of the FoP Questionnaire was adapted by rephrasing the items for the parental perspective (FoP-Q-SF/PR). The FoP-Q-SF/PR is a short questionnaire with adequate psychometric properties (e. g. Cronbach's α=0.90) and satisfying results in terms of construct validity. Significant correlations with FoP are found for the child's current medical condition (r=0.35), time since diagnosis (r=- 0.30), parents' capacity to cope with disease-related fears (r=- 0.45) and parents' quality of life (r=- 0.55). A cut-off value of 46 points is recommended. The FoP-Q-SF/PR offers a feasible and sensitive battery to assess disease-related fears. For clinicians, evaluation of individual results can provide insight into specific problem areas for parents of children with cancer. The questionnaire is thus well suited for use in psychosocial care of families within the field of paediatric oncology.