Effective self-management of Inflammatory Bowel Disease (IBD) in pediatric IBD requires young patients to gain increased independence in managing their disease over time, with the goal of relinquishing full control of their own care. Self-efficacy, defined as confidence in one's ability to manage very specific aspects of disease is a strong predictor of successful health outcomes. We have previously developed and validated the adolescent and young adult (AYA) version of the IBD-specific Self-Efficacy Scale (SES-AYA) using FDA guidelines for patient-reported outcome measure development. The existing tool assesses a child's confidence in managing medical care; everyday life with IBD; feelings; and a future with IBD. Given the importance of parents in pediatric patient's IBD care and the ultimate responsibility for fostering their child's independence in self-management, we suspected that assessment of parents' confidence in their child's ability to manage key aspects of IBD could be useful We sought to adapt the existing self-efficacy measure for use by parents, and to seek preliminary evidence of its utility and internal consistency for eventual use with the pediatric version.Methods:
Validation process of the SES-AYA has been previously reported. The SES-AYA version was adapted to a SES-parent version by altering the wording slightly to include the parent's view of their child's self-management. The SES-parent questionnaire was administered to parents of patients included in the intervention study Improving Transition Readiness in Pediatric IBD with Novel Behavioral Interventions at baseline. Parents of IBD patients 16 to 23 years, diagnosed with ulcerative colitis (UC) or Crohn´s Disease (CD), were included. At baseline the patient filled out the SES-AYA in addition to sociodemographic information (most educated parent´s highest education and number of siblings). Disease activity was measured by the Simple Clinical Colitis Activity Index/Harvey Bradshaw Index. Sex, age and age at diagnoses were collected. Cronbach alpha was used to ascertain the internal consistency of the parent version in relationship to the AYA version. General linear analyses (GLM) were performed to investigate association of SES-AYA and SES-parents with collected variables.Results:
In total 87 patients were included (male/female: 51/36; CD/UC: 62/25; mean age 18.64 SD 1.67). Twenty-three patient-parent pairs of SES were collected. The standard Cronbach Alpha score comparing SES-AYA and SES-parent was 0.83, mean score SES-AYA/SES-parent (SD): 52.49/52.39 (5.43)/(6.54). As seen previously, there was no association between SES-AYA or SES-parent and: sex, age, disease or sociodemographic parameters.Conclusions:
The newly developed SES-parent version had good internal consistency in relation to the SES-AYA version and may be of use in tandem with the pediatric version. Future research should determine whether the parent version is useful in identifying patients at risk for self-management deficits, or potentially as a surrogate marker for transition readiness.