Evaluation of a transition to survivorship program for pediatric, adolescent, and young adult cancer patients and caregivers

Background Survivorship education and anticipatory guidance represent an unmet need for pediatric, adolescent, and young adult (AYA) cancer survivors and their caregivers when treatment ends. This pilot study evaluated the feasibility, acceptability, and preliminary efficacy of a structured transiti...

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Veröffentlicht in:Pediatric blood & cancer 2023-05, Vol.70 (5), p.e30277-n/a
Hauptverfasser: Bingen, Kristin, Karst, Jeffrey, Anderson, Lynnette, Chan, Sherilynn, Jordan, Anna, Morin, Jocelyn, Nichols, Julie, Palou‐Torres, Akasha, Phelan, Rachel, Schmidt, Debra, Yan, Ke, Hoag, Jennifer A
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container_issue 5
container_start_page e30277
container_title Pediatric blood & cancer
container_volume 70
creator Bingen, Kristin
Karst, Jeffrey
Anderson, Lynnette
Chan, Sherilynn
Jordan, Anna
Morin, Jocelyn
Nichols, Julie
Palou‐Torres, Akasha
Phelan, Rachel
Schmidt, Debra
Yan, Ke
Hoag, Jennifer A
description Background Survivorship education and anticipatory guidance represent an unmet need for pediatric, adolescent, and young adult (AYA) cancer survivors and their caregivers when treatment ends. This pilot study evaluated the feasibility, acceptability, and preliminary efficacy of a structured transition program, bridging treatment to survivorship, to reduce distress and anxiety and increase perceived preparedness for survivors and caregivers. Procedure Bridge to Next Steps is a two‐visit program, within 8 weeks prior to treatment completion and 7 months post treatment, which provides survivorship education, psychosocial screening, and resources. Fifty survivors (age range 1–23 years) and 46 caregivers participated. Participants completed pre‐ and post‐intervention measures: Distress Thermometer and Patient‐Reported Outcomes Measurement Information System (PROMIS) anxiety/emotional distress (ages ≥8 years), and perceived preparedness survey (ages ≥14 years). AYA survivors and caregivers completed a post‐intervention acceptability survey. Results Most participants (77.8%) completed both visits, and most AYA survivors (57.1%) and caregivers (76.5%) endorsed the program as helpful. Caregivers’ distress and anxiety scores decreased from pre to post intervention (p 
doi_str_mv 10.1002/pbc.30277
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This pilot study evaluated the feasibility, acceptability, and preliminary efficacy of a structured transition program, bridging treatment to survivorship, to reduce distress and anxiety and increase perceived preparedness for survivors and caregivers. Procedure Bridge to Next Steps is a two‐visit program, within 8 weeks prior to treatment completion and 7 months post treatment, which provides survivorship education, psychosocial screening, and resources. Fifty survivors (age range 1–23 years) and 46 caregivers participated. Participants completed pre‐ and post‐intervention measures: Distress Thermometer and Patient‐Reported Outcomes Measurement Information System (PROMIS) anxiety/emotional distress (ages ≥8 years), and perceived preparedness survey (ages ≥14 years). AYA survivors and caregivers completed a post‐intervention acceptability survey. Results Most participants (77.8%) completed both visits, and most AYA survivors (57.1%) and caregivers (76.5%) endorsed the program as helpful. Caregivers’ distress and anxiety scores decreased from pre to post intervention (p &lt; .01). Survivors’ scores remained the same, which were low at baseline. Survivors and caregivers felt more prepared for survivorship from pre to post intervention (p = .02, &lt;.01, respectively). Conclusions Bridge to Next Steps was feasible and acceptable for most participants. AYA survivors and caregivers felt more prepared for survivorship care after participation. Caregivers reported decreased anxiety and distress from pre to post Bridge, whereas survivors remained at a low level for both. Effective transition programs that better prepare and support pediatric and AYA cancer survivors and families from active treatment to survivorship care can contribute to healthy adjustment.</description><identifier>ISSN: 1545-5009</identifier><identifier>EISSN: 1545-5017</identifier><identifier>DOI: 10.1002/pbc.30277</identifier><identifier>PMID: 36880713</identifier><language>eng</language><publisher>United States: Wiley Subscription Services, Inc</publisher><subject>Adolescent ; Adult ; Anxiety ; Cancer ; cancer survivors ; Caregivers ; Child ; Child, Preschool ; Feasibility studies ; Hematology ; Humans ; Infant ; Neoplasms - psychology ; Neoplasms - therapy ; Oncology ; Patients ; pediatric and AYA ; Pediatrics ; Pilot Projects ; psychological distress ; Surveys ; Survival ; Survivors ; Survivorship ; transition program ; Young Adult ; Young adults</subject><ispartof>Pediatric blood &amp; cancer, 2023-05, Vol.70 (5), p.e30277-n/a</ispartof><rights>2023 Wiley Periodicals LLC.</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c3887-cbc643549ebba5089f56c52ceb69fc2125e1dfe9a75b5154e03f324d119f1dc33</citedby><cites>FETCH-LOGICAL-c3887-cbc643549ebba5089f56c52ceb69fc2125e1dfe9a75b5154e03f324d119f1dc33</cites><orcidid>0000-0002-6080-4997 ; 0000-0002-3987-128X ; 0000-0002-2481-2826</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%2Fpbc.30277$$EPDF$$P50$$Gwiley$$H</linktopdf><linktohtml>$$Uhttps://onlinelibrary.wiley.com/doi/full/10.1002%2Fpbc.30277$$EHTML$$P50$$Gwiley$$H</linktohtml><link.rule.ids>314,780,784,1417,27924,27925,45574,45575</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/36880713$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Bingen, Kristin</creatorcontrib><creatorcontrib>Karst, Jeffrey</creatorcontrib><creatorcontrib>Anderson, Lynnette</creatorcontrib><creatorcontrib>Chan, Sherilynn</creatorcontrib><creatorcontrib>Jordan, Anna</creatorcontrib><creatorcontrib>Morin, Jocelyn</creatorcontrib><creatorcontrib>Nichols, Julie</creatorcontrib><creatorcontrib>Palou‐Torres, Akasha</creatorcontrib><creatorcontrib>Phelan, Rachel</creatorcontrib><creatorcontrib>Schmidt, Debra</creatorcontrib><creatorcontrib>Yan, Ke</creatorcontrib><creatorcontrib>Hoag, Jennifer A</creatorcontrib><title>Evaluation of a transition to survivorship program for pediatric, adolescent, and young adult cancer patients and caregivers</title><title>Pediatric blood &amp; cancer</title><addtitle>Pediatr Blood Cancer</addtitle><description>Background Survivorship education and anticipatory guidance represent an unmet need for pediatric, adolescent, and young adult (AYA) cancer survivors and their caregivers when treatment ends. This pilot study evaluated the feasibility, acceptability, and preliminary efficacy of a structured transition program, bridging treatment to survivorship, to reduce distress and anxiety and increase perceived preparedness for survivors and caregivers. Procedure Bridge to Next Steps is a two‐visit program, within 8 weeks prior to treatment completion and 7 months post treatment, which provides survivorship education, psychosocial screening, and resources. Fifty survivors (age range 1–23 years) and 46 caregivers participated. Participants completed pre‐ and post‐intervention measures: Distress Thermometer and Patient‐Reported Outcomes Measurement Information System (PROMIS) anxiety/emotional distress (ages ≥8 years), and perceived preparedness survey (ages ≥14 years). AYA survivors and caregivers completed a post‐intervention acceptability survey. Results Most participants (77.8%) completed both visits, and most AYA survivors (57.1%) and caregivers (76.5%) endorsed the program as helpful. Caregivers’ distress and anxiety scores decreased from pre to post intervention (p &lt; .01). Survivors’ scores remained the same, which were low at baseline. Survivors and caregivers felt more prepared for survivorship from pre to post intervention (p = .02, &lt;.01, respectively). Conclusions Bridge to Next Steps was feasible and acceptable for most participants. AYA survivors and caregivers felt more prepared for survivorship care after participation. Caregivers reported decreased anxiety and distress from pre to post Bridge, whereas survivors remained at a low level for both. Effective transition programs that better prepare and support pediatric and AYA cancer survivors and families from active treatment to survivorship care can contribute to healthy adjustment.</description><subject>Adolescent</subject><subject>Adult</subject><subject>Anxiety</subject><subject>Cancer</subject><subject>cancer survivors</subject><subject>Caregivers</subject><subject>Child</subject><subject>Child, Preschool</subject><subject>Feasibility studies</subject><subject>Hematology</subject><subject>Humans</subject><subject>Infant</subject><subject>Neoplasms - psychology</subject><subject>Neoplasms - therapy</subject><subject>Oncology</subject><subject>Patients</subject><subject>pediatric and AYA</subject><subject>Pediatrics</subject><subject>Pilot Projects</subject><subject>psychological distress</subject><subject>Surveys</subject><subject>Survival</subject><subject>Survivors</subject><subject>Survivorship</subject><subject>transition program</subject><subject>Young Adult</subject><subject>Young adults</subject><issn>1545-5009</issn><issn>1545-5017</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2023</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><recordid>eNp1kV1LwzAUhoMobk4v_AMS8EbBbUnTtOmljvkBA73Q65KmJzOja2rSTgb-eLMPvRC8Ol8P7zmHF6FzSkaUkGjcFGrESJSmB6hPecyHnND08DcnWQ-deL8IaEK4OEY9lghBUsr66Gu6klUnW2NrbDWWuHWy9mZbtxb7zq3Myjr_bhrcODt3com1dbiB0sjWGXWDZWkr8ArqNuR1ide2q-eh21UtVrJWEOiwIMz9dq6kg7lZgfOn6EjLysPZPg7Q2_30dfI4nD0_PE1uZ0PFhEiHqlBJzHicQVFITkSmeaJ4pKBIMq0iGnGgpYZMprzg4WcgTLMoLinNNC0VYwN0tdMNH3x04Nt8acLBVSVrsJ3Po1TETPCwI6CXf9CF7VwdrttQWcJFzLNAXe8o5az3DnTeOLOUbp1Tkm8syYMl-daSwF7sFbtiCeUv-eNBAMY74NNUsP5fKX-5m-wkvwGekpb3</recordid><startdate>202305</startdate><enddate>202305</enddate><creator>Bingen, Kristin</creator><creator>Karst, Jeffrey</creator><creator>Anderson, Lynnette</creator><creator>Chan, Sherilynn</creator><creator>Jordan, Anna</creator><creator>Morin, Jocelyn</creator><creator>Nichols, Julie</creator><creator>Palou‐Torres, Akasha</creator><creator>Phelan, Rachel</creator><creator>Schmidt, Debra</creator><creator>Yan, Ke</creator><creator>Hoag, Jennifer A</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>7T5</scope><scope>7TK</scope><scope>7TO</scope><scope>8FD</scope><scope>FR3</scope><scope>H94</scope><scope>K9.</scope><scope>P64</scope><scope>RC3</scope><scope>7X8</scope><orcidid>https://orcid.org/0000-0002-6080-4997</orcidid><orcidid>https://orcid.org/0000-0002-3987-128X</orcidid><orcidid>https://orcid.org/0000-0002-2481-2826</orcidid></search><sort><creationdate>202305</creationdate><title>Evaluation of a transition to survivorship program for pediatric, adolescent, and young adult cancer patients and caregivers</title><author>Bingen, Kristin ; 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Medical Complete (Alumni)</collection><collection>Biotechnology and BioEngineering Abstracts</collection><collection>Genetics Abstracts</collection><collection>MEDLINE - Academic</collection><jtitle>Pediatric blood &amp; cancer</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Bingen, Kristin</au><au>Karst, Jeffrey</au><au>Anderson, Lynnette</au><au>Chan, Sherilynn</au><au>Jordan, Anna</au><au>Morin, Jocelyn</au><au>Nichols, Julie</au><au>Palou‐Torres, Akasha</au><au>Phelan, Rachel</au><au>Schmidt, Debra</au><au>Yan, Ke</au><au>Hoag, Jennifer A</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Evaluation of a transition to survivorship program for pediatric, adolescent, and young adult cancer patients and caregivers</atitle><jtitle>Pediatric blood &amp; cancer</jtitle><addtitle>Pediatr Blood Cancer</addtitle><date>2023-05</date><risdate>2023</risdate><volume>70</volume><issue>5</issue><spage>e30277</spage><epage>n/a</epage><pages>e30277-n/a</pages><issn>1545-5009</issn><eissn>1545-5017</eissn><abstract>Background Survivorship education and anticipatory guidance represent an unmet need for pediatric, adolescent, and young adult (AYA) cancer survivors and their caregivers when treatment ends. This pilot study evaluated the feasibility, acceptability, and preliminary efficacy of a structured transition program, bridging treatment to survivorship, to reduce distress and anxiety and increase perceived preparedness for survivors and caregivers. Procedure Bridge to Next Steps is a two‐visit program, within 8 weeks prior to treatment completion and 7 months post treatment, which provides survivorship education, psychosocial screening, and resources. Fifty survivors (age range 1–23 years) and 46 caregivers participated. Participants completed pre‐ and post‐intervention measures: Distress Thermometer and Patient‐Reported Outcomes Measurement Information System (PROMIS) anxiety/emotional distress (ages ≥8 years), and perceived preparedness survey (ages ≥14 years). AYA survivors and caregivers completed a post‐intervention acceptability survey. Results Most participants (77.8%) completed both visits, and most AYA survivors (57.1%) and caregivers (76.5%) endorsed the program as helpful. Caregivers’ distress and anxiety scores decreased from pre to post intervention (p &lt; .01). Survivors’ scores remained the same, which were low at baseline. Survivors and caregivers felt more prepared for survivorship from pre to post intervention (p = .02, &lt;.01, respectively). Conclusions Bridge to Next Steps was feasible and acceptable for most participants. AYA survivors and caregivers felt more prepared for survivorship care after participation. Caregivers reported decreased anxiety and distress from pre to post Bridge, whereas survivors remained at a low level for both. Effective transition programs that better prepare and support pediatric and AYA cancer survivors and families from active treatment to survivorship care can contribute to healthy adjustment.</abstract><cop>United States</cop><pub>Wiley Subscription Services, Inc</pub><pmid>36880713</pmid><doi>10.1002/pbc.30277</doi><tpages>9</tpages><orcidid>https://orcid.org/0000-0002-6080-4997</orcidid><orcidid>https://orcid.org/0000-0002-3987-128X</orcidid><orcidid>https://orcid.org/0000-0002-2481-2826</orcidid><oa>free_for_read</oa></addata></record>
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source MEDLINE; Access via Wiley Online Library
subjects Adolescent
Adult
Anxiety
Cancer
cancer survivors
Caregivers
Child
Child, Preschool
Feasibility studies
Hematology
Humans
Infant
Neoplasms - psychology
Neoplasms - therapy
Oncology
Patients
pediatric and AYA
Pediatrics
Pilot Projects
psychological distress
Surveys
Survival
Survivors
Survivorship
transition program
Young Adult
Young adults
title Evaluation of a transition to survivorship program for pediatric, adolescent, and young adult cancer patients and caregivers
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