(317) Evaluating the acceptability and utility of the Internet-delivered Cystic Fibrosis Mental Health Prevention, Wellness, and Resource program.

Background: Mental health symptoms in people with cystic fibrosis (CF) may be presenting earlier in childhood [1, 2]. A consistent approach to address the mental health needs of this population has been advocated for [3]. One method of service delivery that eliminates barriers to care is the Internet. To date, no specific program designed to address the mental health needs of children with CF exists. Our research team created a cognitive behavioural psychoeducational program entitled the Internet-delivered Cystic Fibrosis Mental Health Prevention, Wellness, and Resource (iCF-PWR). The purpose of the current study was to obtain feedback on the acceptability and utility of the iCF-PWR.

Methods: The iCF-PWR is comprised of 5 modules: (1) What is CF?; (2) How to stay healthy with CF?; (3) How does CF affect me?; (4) Feelings, physical sensations, thoughts, and behaviours; and (5) Coping strategies. Data collection is currently ongoing. Thus far, participants included 3 children with CF (M_age = 11.33) and their parents (M_age = 45.66), as well as 3 health care providers (M_age = 50.00) recruited from CF clinics in Saskatchewan, Canada. Parent/child dyads and health care providers were provided access to the iCF-PWR, reviewed the program, and completed ratings for the components of each module on a 7-point scale (1=poor to 7=very good) in terms of their relevance, usability, quality, clarity, and potential effectiveness. Participants also completed open-ended questions to describe strengths and weaknesses of the iCF-PWR.

Results: Preliminary results demonstrated that for parent/child dyads, mean ratings for each iCF-PWR component across all modules ranged from 6.19 to 6.79. The acceptability criterion of 80%, requiring 80% of evaluators to provide ratings of 5-7 for each iCF-PWR component was surpassed. For health care providers, this criterion was also surpassed and mean ratings for each iCF-PWR component across all modules ranged from 6.33 to 7.00. Minor changes were suggested by evaluators to improve functionality. Strengths identified by evaluators were the inclusion of stories from children with CF and the self-directed nature of the program.

Conclusions: The ratings for the iCF-PWR modules surpassed a priori acceptability criterion for each component for both parent/child dyads and health care providers. After participant recruitment and final analyses are complete, changes may be made to the iCF-PWR prior to evaluating the effectiveness of the program in preventing mental health symptoms and improving disease knowledge and coping skills. It is anticipated that the integration of the iCF-PWR into CF clinic care models will contribute to improving the quality of life of children with CF.

Acknowledgements: This work was supported by Cystic Fibrosis Canada, the SK Centre for Patient-Oriented Research (SCPOR), and SK Health Research Foundation (SHRF).

References: [1] Gundogu U, et al. Major depression and psychiatric comorbidity in Turkish children and adolescents with cystic fibrosis. Pediatr Pulmonol. 2019; 54:1927-35. https://doi.org/10.1002/ppul.24492
[2] Reay KA, Puckey M. Psychological well-being of cystic fibrosis patients ages 4-10 years. J Cyst Fibros. 2019; 16:S184. https://doi.org/10.1016/S1569-1993(19)30741-6
[3] Quittner AL, et al. International Committee on Mental Health in Cystic Fibrosis: Cystic Fibrosis Foundation and European Cystic Fibrosis Society consensus statements for screening and treating depression and anxiety. Thorax. 2016; 71:26-34. https://doi.org/10.1136/thoraxjnl-2015-207488