Resilience in adolescents and young adults with cystic fibrosis: A pilot feasibility study of the promoting resilience in stress management intervention

被引:19
作者
Toprak, Demet [1 ,2 ]
Nay, Laura [1 ,2 ]
McNamara, Sharon [1 ,2 ]
Rosenberg, Abby R. [2 ,3 ,4 ]
Rosenfeld, Margaret [1 ,2 ]
Yi-Frazier, Joyce P. [2 ]
机构
[1] Univ Washington, Sch Med, Dept Pediat, Div Pulm & Sleep Med, Seattle, WA 98195 USA
[2] Seattle Childrens Res Inst, Ctr Clin & Translat Res, Seattle Childrens Hosp, Seattle, WA USA
[3] Univ Washington, Sch Med, Dept Pediat, Div Hematol & Oncol, Seattle, WA 98195 USA
[4] Univ Washington, Sch Med, Dept Pediat, Div Bioeth & Palliat Care, Seattle, WA 98195 USA
关键词
adolescents; young adults; cystic fibrosis; resilience; QUALITY-OF-LIFE; DEPRESSIVE SYMPTOMS; HEALTH; CHILDREN; PARENTS; QUESTIONNAIRE; VALIDATION; CAREGIVERS; CHALLENGES; ADHERENCE;
D O I
10.1002/ppul.24574
中图分类号
R72 [儿科学];
学科分类号
100202 ;
摘要
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.
引用
收藏
页码:638 / 645
页数:8
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