Demet Toprak1,2, Laura Nay1,2, Sharon McNamara1,2, Abby R Rosenberg2,3,4, Margaret Rosenfeld1,2, Joyce P Yi-Frazier2. 1. Division of Pulmonary and Sleep Medicine, Department of Pediatrics, University of Washington School of Medicine, Seattle, Washington. 2. Seattle Children's Hospital, Center for Clinical and Translational Research, Seattle Children's Research Institute, Seattle, Washington. 3. Division of Hematology and Oncology, Department of Pediatrics, University of Washington School of Medicine, Seattle, Washington. 4. Division of Bioethics and Palliative Care, Department of Pediatrics, University of Washington School of Medicine, Seattle, Washington.
Abstract
BACKGROUND: Disease burden in cystic fibrosis (CF) impacts quality of life, distress, and treatment adherence. The promoting resilience in stress management (PRISM), is a brief patient-focused intervention to promote resilience in adolescents and young adults (AYAs), which may mitigate the negative outcomes, and is proven to be feasible and acceptable in other diseases. OBJECTIVE: Our aim was to test the feasibility and acceptability of PRISM among AYAs with CF in addition to collecting pilot data regarding patient-reported resilience, distress, and quality of life. METHODS: Eligible English speaking, 12 to 21 year patients admitted to the hospital were enrolled. We defined feasibility as 80% completion of all sessions. Acceptability was defined qualitatively based on feedback about timing, content and delivery of intervention. As an exploratory aim, questionnaires measuring resilience (Connor-Davidson resilience scale), distress (Kessler-6 scale), and disease-specific health-related quality of life (CF questionnaire-revised [CFQ-R]) were given at baseline and postintervention. RESULTS: 10 out of 17 (59%) patients consented to participate. Eight were Caucasian, eight female with age range 13 to 20 years (median: 18). Nine completed all PRISM sessions with universally positive feedback. Health perception and respiratory domain scores of the CFQ-R improved (47.2-65.1; 95% confidence interval [CI], 2.6-35.6; 50.9-61.9; 95% CI, 1.7-19.9, respectively), however in the setting of inpatient exacerbation treatment it would be hard to attribute these changes to PRISM. CONCLUSION: PRISM was feasible and highly acceptable among AYAs with CF. Future research is needed to test the efficacy of PRISM among a larger group of patients with CF in a multicenter trial.
BACKGROUND: Disease burden in cystic fibrosis (CF) impacts quality of life, distress, and treatment adherence. The promoting resilience in stress management (PRISM), is a brief patient-focused intervention to promote resilience in adolescents and young adults (AYAs), which may mitigate the negative outcomes, and is proven to be feasible and acceptable in other diseases. OBJECTIVE: Our aim was to test the feasibility and acceptability of PRISM among AYAs with CF in addition to collecting pilot data regarding patient-reported resilience, distress, and quality of life. METHODS: Eligible English speaking, 12 to 21 year patients admitted to the hospital were enrolled. We defined feasibility as 80% completion of all sessions. Acceptability was defined qualitatively based on feedback about timing, content and delivery of intervention. As an exploratory aim, questionnaires measuring resilience (Connor-Davidson resilience scale), distress (Kessler-6 scale), and disease-specific health-related quality of life (CF questionnaire-revised [CFQ-R]) were given at baseline and postintervention. RESULTS: 10 out of 17 (59%) patients consented to participate. Eight were Caucasian, eight female with age range 13 to 20 years (median: 18). Nine completed all PRISM sessions with universally positive feedback. Health perception and respiratory domain scores of the CFQ-R improved (47.2-65.1; 95% confidence interval [CI], 2.6-35.6; 50.9-61.9; 95% CI, 1.7-19.9, respectively), however in the setting of inpatient exacerbation treatment it would be hard to attribute these changes to PRISM. CONCLUSION: PRISM was feasible and highly acceptable among AYAs with CF. Future research is needed to test the efficacy of PRISM among a larger group of patients with CF in a multicenter trial.
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