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 |
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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 |
format | Article |
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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><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 & 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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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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