A Scoping Review Exploring Access to Survivorship Care for Childhood, Adolescent, and Young Adult Cancer Survivors: How Can We Optimize Care Pathways?
Jordana K McLoone,1,2 Ursula M Sansom-Daly,1,2 Alexia Paglia,1,2 Jessica Chia,1,2 Hanne Bækgaard Larsen,3 Lorna A Fern,4 Richard J Cohn,1,2 Christina Signorelli1,2 1Behavioural Sciences Unit, Discipline of Paediatrics & Child Health, School of Clinical Medicine, UNSW Medicine & Health, Randw...
| Main Authors: | , , , , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
Dove Medical Press
2023-09-01
|
| Series: | Adolescent Health, Medicine and Therapeutics |
| Subjects: | |
| Online Access: | https://www.dovepress.com/a-scoping-review-exploring-access-to-survivorship-care-for-childhood-a-peer-reviewed-fulltext-article-AHMT |
| _version_ | 1827810631143653376 |
|---|---|
| author | McLoone JK Sansom-Daly UM Paglia A Chia J Larsen HB Fern LA Cohn RJ Signorelli C |
| author_facet | McLoone JK Sansom-Daly UM Paglia A Chia J Larsen HB Fern LA Cohn RJ Signorelli C |
| author_sort | McLoone JK |
| collection | DOAJ |
| description | Jordana K McLoone,1,2 Ursula M Sansom-Daly,1,2 Alexia Paglia,1,2 Jessica Chia,1,2 Hanne Bækgaard Larsen,3 Lorna A Fern,4 Richard J Cohn,1,2 Christina Signorelli1,2 1Behavioural Sciences Unit, Discipline of Paediatrics & Child Health, School of Clinical Medicine, UNSW Medicine & Health, Randwick Clinical Campus, UNSW Sydney, Sydney, NSW, Australia; 2Kids Cancer Centre, Sydney Children’s Hospital, Randwick, NSW, Australia; 3Department for Pediatric and Adolescent Medicine, The Juliane Marie Center, Copenhagen University Hospital–Rigshospitalet, Copenhagen, Denmark & Faculty of Health and Medical Sciences, University of Copenhagen, Copenhagen, Denmark; 4Cancer Clinical Trials Unit, University College London Hospitals NHS Foundation Trust, London, NW1 2PG, UKCorrespondence: Jordana K McLoone, Discipline of Paediatrics & Child Health, UNSW Medicine & Health, Randwick Clinical Campus, UNSW, Sydney, NSW, Australia, Email J.McLoone@unsw.edu.auAbstract: Childhood, adolescent, and young adult (CAYA) cancer survivors are at risk of developing late effects associated with their cancer and its treatment. Survivors’ engagement with recommended follow-up care to minimize these risks is suboptimal, with many barriers commonly reported. This scoping review aims to summarize the barriers to accessing follow-up care, using the dimensions of Levesque’s framework for accessing healthcare. We retrieved quantitative studies addressing barriers and facilitators to accessing survivorship care in CAYA survivors from PubMed, EMBASE and CINAHL. Data was categorized into the five healthcare access dimensions outlined in Levesque’s framework: i) approachability, ii) acceptability, iii) availability and accommodation, iv) affordability, and v) appropriateness. We identified 27 quantitative studies in our review. Commonly reported barriers to accessing care included a lack of survivor and provider knowledge of cancer survivorship, poor health beliefs, low personal salience to engage in follow-up care, high out-of-pocket costs and survivors living long distances from clinical services. Many studies reported increased barriers to care during the transition from paediatric to adult-oriented healthcare services, including a lack of developmentally appropriate services, lack of appointment reminders, and a poorly defined transition process. Healthcare-related self-efficacy was identified as an important facilitator to accessing follow-up care. The transition from pediatric to adult-oriented healthcare services is a challenging time for childhood, adolescent, and young adult cancer survivors. Optimizing CAYAs’ ability to access high-quality survivorship care thus requires careful consideration of the quality and acceptability of services, alongside financial and physical/practical barriers (eg distance from available services, appointment-booking mechanisms). Levesque’s model highlighted several areas where evidence is well established (eg financial barriers) or lacking (eg factors associated with engagement in follow-up care) which are useful to understand barriers and facilitators that impact access to survivorship for CAYA cancer survivors, as well as guiding areas for further evaluation.Keywords: pediatric, adolescent and young adult, cancer, survivorship care, barriers, access to care |
| first_indexed | 2024-03-11T22:54:20Z |
| format | Article |
| id | doaj.art-122f945377c54e1598a2c699154b6411 |
| institution | Directory Open Access Journal |
| issn | 1179-318X |
| language | English |
| last_indexed | 2024-03-11T22:54:20Z |
| publishDate | 2023-09-01 |
| publisher | Dove Medical Press |
| record_format | Article |
| series | Adolescent Health, Medicine and Therapeutics |
| spelling | doaj.art-122f945377c54e1598a2c699154b64112023-09-21T19:09:00ZengDove Medical PressAdolescent Health, Medicine and Therapeutics1179-318X2023-09-01Volume 1415317486850A Scoping Review Exploring Access to Survivorship Care for Childhood, Adolescent, and Young Adult Cancer Survivors: How Can We Optimize Care Pathways?McLoone JKSansom-Daly UMPaglia AChia JLarsen HBFern LACohn RJSignorelli CJordana K McLoone,1,2 Ursula M Sansom-Daly,1,2 Alexia Paglia,1,2 Jessica Chia,1,2 Hanne Bækgaard Larsen,3 Lorna A Fern,4 Richard J Cohn,1,2 Christina Signorelli1,2 1Behavioural Sciences Unit, Discipline of Paediatrics & Child Health, School of Clinical Medicine, UNSW Medicine & Health, Randwick Clinical Campus, UNSW Sydney, Sydney, NSW, Australia; 2Kids Cancer Centre, Sydney Children’s Hospital, Randwick, NSW, Australia; 3Department for Pediatric and Adolescent Medicine, The Juliane Marie Center, Copenhagen University Hospital–Rigshospitalet, Copenhagen, Denmark & Faculty of Health and Medical Sciences, University of Copenhagen, Copenhagen, Denmark; 4Cancer Clinical Trials Unit, University College London Hospitals NHS Foundation Trust, London, NW1 2PG, UKCorrespondence: Jordana K McLoone, Discipline of Paediatrics & Child Health, UNSW Medicine & Health, Randwick Clinical Campus, UNSW, Sydney, NSW, Australia, Email J.McLoone@unsw.edu.auAbstract: Childhood, adolescent, and young adult (CAYA) cancer survivors are at risk of developing late effects associated with their cancer and its treatment. Survivors’ engagement with recommended follow-up care to minimize these risks is suboptimal, with many barriers commonly reported. This scoping review aims to summarize the barriers to accessing follow-up care, using the dimensions of Levesque’s framework for accessing healthcare. We retrieved quantitative studies addressing barriers and facilitators to accessing survivorship care in CAYA survivors from PubMed, EMBASE and CINAHL. Data was categorized into the five healthcare access dimensions outlined in Levesque’s framework: i) approachability, ii) acceptability, iii) availability and accommodation, iv) affordability, and v) appropriateness. We identified 27 quantitative studies in our review. Commonly reported barriers to accessing care included a lack of survivor and provider knowledge of cancer survivorship, poor health beliefs, low personal salience to engage in follow-up care, high out-of-pocket costs and survivors living long distances from clinical services. Many studies reported increased barriers to care during the transition from paediatric to adult-oriented healthcare services, including a lack of developmentally appropriate services, lack of appointment reminders, and a poorly defined transition process. Healthcare-related self-efficacy was identified as an important facilitator to accessing follow-up care. The transition from pediatric to adult-oriented healthcare services is a challenging time for childhood, adolescent, and young adult cancer survivors. Optimizing CAYAs’ ability to access high-quality survivorship care thus requires careful consideration of the quality and acceptability of services, alongside financial and physical/practical barriers (eg distance from available services, appointment-booking mechanisms). Levesque’s model highlighted several areas where evidence is well established (eg financial barriers) or lacking (eg factors associated with engagement in follow-up care) which are useful to understand barriers and facilitators that impact access to survivorship for CAYA cancer survivors, as well as guiding areas for further evaluation.Keywords: pediatric, adolescent and young adult, cancer, survivorship care, barriers, access to carehttps://www.dovepress.com/a-scoping-review-exploring-access-to-survivorship-care-for-childhood-a-peer-reviewed-fulltext-article-AHMTpediatricadolescent and young adultcancersurvivorship carebarriersaccess to care |
| spellingShingle | McLoone JK Sansom-Daly UM Paglia A Chia J Larsen HB Fern LA Cohn RJ Signorelli C A Scoping Review Exploring Access to Survivorship Care for Childhood, Adolescent, and Young Adult Cancer Survivors: How Can We Optimize Care Pathways? Adolescent Health, Medicine and Therapeutics pediatric adolescent and young adult cancer survivorship care barriers access to care |
| title | A Scoping Review Exploring Access to Survivorship Care for Childhood, Adolescent, and Young Adult Cancer Survivors: How Can We Optimize Care Pathways? |
| title_full | A Scoping Review Exploring Access to Survivorship Care for Childhood, Adolescent, and Young Adult Cancer Survivors: How Can We Optimize Care Pathways? |
| title_fullStr | A Scoping Review Exploring Access to Survivorship Care for Childhood, Adolescent, and Young Adult Cancer Survivors: How Can We Optimize Care Pathways? |
| title_full_unstemmed | A Scoping Review Exploring Access to Survivorship Care for Childhood, Adolescent, and Young Adult Cancer Survivors: How Can We Optimize Care Pathways? |
| title_short | A Scoping Review Exploring Access to Survivorship Care for Childhood, Adolescent, and Young Adult Cancer Survivors: How Can We Optimize Care Pathways? |
| title_sort | scoping review exploring access to survivorship care for childhood adolescent and young adult cancer survivors how can we optimize care pathways |
| topic | pediatric adolescent and young adult cancer survivorship care barriers access to care |
| url | https://www.dovepress.com/a-scoping-review-exploring-access-to-survivorship-care-for-childhood-a-peer-reviewed-fulltext-article-AHMT |
| work_keys_str_mv | AT mcloonejk ascopingreviewexploringaccesstosurvivorshipcareforchildhoodadolescentandyoungadultcancersurvivorshowcanweoptimizecarepathways AT sansomdalyum ascopingreviewexploringaccesstosurvivorshipcareforchildhoodadolescentandyoungadultcancersurvivorshowcanweoptimizecarepathways AT pagliaa ascopingreviewexploringaccesstosurvivorshipcareforchildhoodadolescentandyoungadultcancersurvivorshowcanweoptimizecarepathways AT chiaj ascopingreviewexploringaccesstosurvivorshipcareforchildhoodadolescentandyoungadultcancersurvivorshowcanweoptimizecarepathways AT larsenhb ascopingreviewexploringaccesstosurvivorshipcareforchildhoodadolescentandyoungadultcancersurvivorshowcanweoptimizecarepathways AT fernla ascopingreviewexploringaccesstosurvivorshipcareforchildhoodadolescentandyoungadultcancersurvivorshowcanweoptimizecarepathways AT cohnrj ascopingreviewexploringaccesstosurvivorshipcareforchildhoodadolescentandyoungadultcancersurvivorshowcanweoptimizecarepathways AT signorellic ascopingreviewexploringaccesstosurvivorshipcareforchildhoodadolescentandyoungadultcancersurvivorshowcanweoptimizecarepathways AT mcloonejk scopingreviewexploringaccesstosurvivorshipcareforchildhoodadolescentandyoungadultcancersurvivorshowcanweoptimizecarepathways AT sansomdalyum scopingreviewexploringaccesstosurvivorshipcareforchildhoodadolescentandyoungadultcancersurvivorshowcanweoptimizecarepathways AT pagliaa scopingreviewexploringaccesstosurvivorshipcareforchildhoodadolescentandyoungadultcancersurvivorshowcanweoptimizecarepathways AT chiaj scopingreviewexploringaccesstosurvivorshipcareforchildhoodadolescentandyoungadultcancersurvivorshowcanweoptimizecarepathways AT larsenhb scopingreviewexploringaccesstosurvivorshipcareforchildhoodadolescentandyoungadultcancersurvivorshowcanweoptimizecarepathways AT fernla scopingreviewexploringaccesstosurvivorshipcareforchildhoodadolescentandyoungadultcancersurvivorshowcanweoptimizecarepathways AT cohnrj scopingreviewexploringaccesstosurvivorshipcareforchildhoodadolescentandyoungadultcancersurvivorshowcanweoptimizecarepathways AT signorellic scopingreviewexploringaccesstosurvivorshipcareforchildhoodadolescentandyoungadultcancersurvivorshowcanweoptimizecarepathways |