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

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 o...

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Veröffentlicht in:Pediatric pulmonology 2020-03, Vol.55 (3), p.638-645
Hauptverfasser: Toprak, Demet, Nay, Laura, McNamara, Sharon, Rosenberg, Abby R., Rosenfeld, Margaret, Yi‐Frazier, Joyce P.
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container_end_page 645
container_issue 3
container_start_page 638
container_title Pediatric pulmonology
container_volume 55
creator Toprak, Demet
Nay, Laura
McNamara, Sharon
Rosenberg, Abby R.
Rosenfeld, Margaret
Yi‐Frazier, Joyce P.
description 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.
doi_str_mv 10.1002/ppul.24574
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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.</description><identifier>ISSN: 8755-6863</identifier><identifier>EISSN: 1099-0496</identifier><identifier>DOI: 10.1002/ppul.24574</identifier><identifier>PMID: 31794160</identifier><language>eng</language><publisher>United States: Wiley Subscription Services, Inc</publisher><subject>Adolescent ; adolescents ; Adult ; Cystic fibrosis ; Cystic Fibrosis - psychology ; Cystic Fibrosis - therapy ; Feasibility Studies ; Female ; Humans ; Male ; Patients ; Pilot Projects ; Quality of Life ; resilience ; Resilience, Psychological ; Stress, Psychological - therapy ; Surveys and Questionnaires ; Young Adult ; Young adults</subject><ispartof>Pediatric pulmonology, 2020-03, Vol.55 (3), p.638-645</ispartof><rights>2019 Wiley Periodicals, Inc.</rights><rights>2020 Wiley Periodicals, Inc.</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c4484-ba071181c35a72cd4b7f619282cba5f1319a515bf7865dd57b59e89a5420f1983</citedby><cites>FETCH-LOGICAL-c4484-ba071181c35a72cd4b7f619282cba5f1319a515bf7865dd57b59e89a5420f1983</cites><orcidid>0000-0001-9343-3769</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://onlinelibrary.wiley.com/doi/pdf/10.1002%2Fppul.24574$$EPDF$$P50$$Gwiley$$H</linktopdf><linktohtml>$$Uhttps://onlinelibrary.wiley.com/doi/full/10.1002%2Fppul.24574$$EHTML$$P50$$Gwiley$$H</linktohtml><link.rule.ids>230,314,780,784,885,1417,27924,27925,45574,45575</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/31794160$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Toprak, Demet</creatorcontrib><creatorcontrib>Nay, Laura</creatorcontrib><creatorcontrib>McNamara, Sharon</creatorcontrib><creatorcontrib>Rosenberg, Abby R.</creatorcontrib><creatorcontrib>Rosenfeld, Margaret</creatorcontrib><creatorcontrib>Yi‐Frazier, Joyce P.</creatorcontrib><title>Resilience in adolescents and young adults with cystic fibrosis: A pilot feasibility study of the promoting resilience in stress management intervention</title><title>Pediatric pulmonology</title><addtitle>Pediatr Pulmonol</addtitle><description>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.</description><subject>Adolescent</subject><subject>adolescents</subject><subject>Adult</subject><subject>Cystic fibrosis</subject><subject>Cystic Fibrosis - psychology</subject><subject>Cystic Fibrosis - therapy</subject><subject>Feasibility Studies</subject><subject>Female</subject><subject>Humans</subject><subject>Male</subject><subject>Patients</subject><subject>Pilot Projects</subject><subject>Quality of Life</subject><subject>resilience</subject><subject>Resilience, Psychological</subject><subject>Stress, Psychological - therapy</subject><subject>Surveys and Questionnaires</subject><subject>Young Adult</subject><subject>Young adults</subject><issn>8755-6863</issn><issn>1099-0496</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2020</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><recordid>eNp9kc9u1DAQxi0EokvhwgMgS1wQUlpPYscOh0pVBRRppVaIni0ncXZdOXawnVZ5FG48C0-Gt1sqyoGTxzM_ffPnQ-g1kCMgpDyeptkelZRx-gStgDRNQWhTP0UrwRkralFXB-hFjNeE5FoDz9FBBbyhUJMV-vFVR2ONdp3GxmHVe6tjp12KWLkeL352m5ydbU7cmrTF3RKT6fBg2uCjiR_wKZ6M9QkPWkXTZq204JjmfsF-wGmr8RT86JPJOuFRr5jyP-JRObXRY27566dxSYebHBrvXqJng7JRv7p_D9HVp4_fzs6L9cXnL2en66KjVNCiVYQDCOgqpnjZ9bTlQw1NKcquVWyAChrFgLUDFzXre8Zb1miRc7QkAzSiOkQne91pbkfd73YPysopmFGFRXpl5OOKM1u58TdS1IJBDVng3b1A8N9nHZMcTT6htcppP0dZViURnAInGX37D3rt5-DyepliFasJqXYTvd9TXT5xDHp4GAaI3Dkud47LO8cz_Obv8R_QPxZnAPbArbF6-Y-UvLy8Wu9FfwP507vB</recordid><startdate>202003</startdate><enddate>202003</enddate><creator>Toprak, Demet</creator><creator>Nay, Laura</creator><creator>McNamara, Sharon</creator><creator>Rosenberg, Abby R.</creator><creator>Rosenfeld, Margaret</creator><creator>Yi‐Frazier, Joyce P.</creator><general>Wiley Subscription Services, Inc</general><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>K9.</scope><scope>7X8</scope><scope>5PM</scope><orcidid>https://orcid.org/0000-0001-9343-3769</orcidid></search><sort><creationdate>202003</creationdate><title>Resilience in adolescents and young adults with cystic fibrosis: A pilot feasibility study of the promoting resilience in stress management intervention</title><author>Toprak, Demet ; Nay, Laura ; McNamara, Sharon ; Rosenberg, Abby R. ; Rosenfeld, Margaret ; Yi‐Frazier, Joyce P.</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c4484-ba071181c35a72cd4b7f619282cba5f1319a515bf7865dd57b59e89a5420f1983</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2020</creationdate><topic>Adolescent</topic><topic>adolescents</topic><topic>Adult</topic><topic>Cystic fibrosis</topic><topic>Cystic Fibrosis - psychology</topic><topic>Cystic Fibrosis - therapy</topic><topic>Feasibility Studies</topic><topic>Female</topic><topic>Humans</topic><topic>Male</topic><topic>Patients</topic><topic>Pilot Projects</topic><topic>Quality of Life</topic><topic>resilience</topic><topic>Resilience, Psychological</topic><topic>Stress, Psychological - therapy</topic><topic>Surveys and Questionnaires</topic><topic>Young Adult</topic><topic>Young adults</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Toprak, Demet</creatorcontrib><creatorcontrib>Nay, Laura</creatorcontrib><creatorcontrib>McNamara, Sharon</creatorcontrib><creatorcontrib>Rosenberg, Abby R.</creatorcontrib><creatorcontrib>Rosenfeld, Margaret</creatorcontrib><creatorcontrib>Yi‐Frazier, Joyce P.</creatorcontrib><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>ProQuest Health &amp; Medical Complete (Alumni)</collection><collection>MEDLINE - Academic</collection><collection>PubMed Central (Full Participant titles)</collection><jtitle>Pediatric pulmonology</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Toprak, Demet</au><au>Nay, Laura</au><au>McNamara, Sharon</au><au>Rosenberg, Abby R.</au><au>Rosenfeld, Margaret</au><au>Yi‐Frazier, Joyce P.</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Resilience in adolescents and young adults with cystic fibrosis: A pilot feasibility study of the promoting resilience in stress management intervention</atitle><jtitle>Pediatric pulmonology</jtitle><addtitle>Pediatr Pulmonol</addtitle><date>2020-03</date><risdate>2020</risdate><volume>55</volume><issue>3</issue><spage>638</spage><epage>645</epage><pages>638-645</pages><issn>8755-6863</issn><eissn>1099-0496</eissn><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.</abstract><cop>United States</cop><pub>Wiley Subscription Services, Inc</pub><pmid>31794160</pmid><doi>10.1002/ppul.24574</doi><tpages>8</tpages><orcidid>https://orcid.org/0000-0001-9343-3769</orcidid><oa>free_for_read</oa></addata></record>
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source MEDLINE; Wiley Online Library All Journals
subjects Adolescent
adolescents
Adult
Cystic fibrosis
Cystic Fibrosis - psychology
Cystic Fibrosis - therapy
Feasibility Studies
Female
Humans
Male
Patients
Pilot Projects
Quality of Life
resilience
Resilience, Psychological
Stress, Psychological - therapy
Surveys and Questionnaires
Young Adult
Young adults
title Resilience in adolescents and young adults with cystic fibrosis: A pilot feasibility study of the promoting resilience in stress management intervention
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