A Scoping Review Exploring Access to Survivorship Care for Childhood, Adolescent, and Young Adult Cancer Survivors: How Can We Optimize Care Pathways?

References

• Society AC. Key Statistics for Childhood Cancers; 2023. Available from: https://www.cancer.org/cancer/types/cancer-in-children/key-statistics.html. Accessed June 29, 2023.
   Google Scholar
• Welfare AIoHa. Cancer in adolescents and young adults in Australia 2023. 2023.
   Google Scholar
• Signorelli C, Fardell JE, Wakefield CE, Webber K, Cohn RJ. The cost of cure: chronic conditions in survivors of child, adolescent, and young adult cancers. In: Cancer and Chronic Conditions: Addressing the Problem of Multimorbidity in Cancer Patients and Survivors. Springer; 2016:371–420.
   Google Scholar
• Williams AM, Mandelblatt J, Wang M, et al. Premature aging as an accumulation of deficits in young adult survivors of pediatric cancer. JNCI. 2023;115(2):200–207. doi:10.1093/jnci/djac209
   PubMedGoogle Scholar
• Bright CJ, Hawkins MM, Guha J, et al. Risk of cerebrovascular events in 178 962 five-year survivors of cancer diagnosed at 15 to 39 years of age: the TYACSS (Teenage and Young Adult Cancer Survivor Study). Circulation. 2017;135(13):1194–1210. doi:10.1161/CIRCULATIONAHA.116.025778
   PubMed Web of Science ®Google Scholar
• Van Dorp W, Haupt R, Anderson RA, et al. Reproductive function and outcomes in female survivors of childhood, adolescent, and young adult cancer: a review. J Clin Oncol. 2018;36(21):2169. doi:10.1200/JCO.2017.76.3441
   PubMed Web of Science ®Google Scholar
• Signorelli C, Wakefield CE, McLoone JK, et al. Childhood cancer survivors’ reported late effects, motivations for seeking survivorship care, and patterns of attendance. Oncologist. 2023;28(5):e276–e86. doi:10.1093/oncolo/oyad004
   PubMed Web of Science ®Google Scholar
• Hudson MM, Bhatia S, Casillas J, et al. Long-term follow-up care for childhood, adolescent, and young adult cancer survivors. Pediatrics. 2021;148(3). doi:10.1542/peds.2021-053127
   PubMed Web of Science ®Google Scholar
• Rose SR, Horne VE, Howell J, et al. Late endocrine effects of childhood cancer. Nat Rev Endocrinol. 2016;12(6):319–336. doi:10.1038/nrendo.2016.45
   PubMed Web of Science ®Google Scholar
• Zhang A, Wang K, Zebrack B, Tan CY, Walling E, Chugh R. Psychosocial, behavioral, and supportive interventions for pediatric, adolescent, and young adult cancer survivors: a systematic review and meta-analysis. Crit Rev Oncol Hematol. 2021;160:103291. doi:10.1016/j.critrevonc.2021.103291
   PubMed Web of Science ®Google Scholar
• Michel G, Brinkman TM, Wakefield CE, Grootenhuis M. Psychological outcomes, health-related quality of life, and neurocognitive functioning in survivors of childhood cancer and their parents. Pediatr Clin. 2020;67(6):1103–1134. doi:10.1016/j.pcl.2020.07.005
   PubMed Web of Science ®Google Scholar
• Fardell JE, Wakefield CE, De Abreu Lourenco R, et al. Long‐term health‐related quality of life in young childhood cancer survivors and their parents. Pediatr Blood Cancer. 2021;68(12):e29398. doi:10.1002/pbc.29398
   PubMed Web of Science ®Google Scholar
• Yang P, Zhang L, Hou X. Incidence of suicide among adolescent and young adult cancer patients: a population-based study. Cancer Cell Int. 2021;21(1):1–11. doi:10.1186/s12935-021-02225-y
   PubMed Web of Science ®Google Scholar
• Brinkman TM, Zhang N, Recklitis CJ, et al. Suicide ideation and associated mortality in adult survivors of childhood cancer. Cancer. 2014;120(2):271–277. doi:10.1002/cncr.28385
   PubMed Web of Science ®Google Scholar
• Brinkman TM, Zhu L, Zeltzer L, et al. Longitudinal patterns of psychological distress in adult survivors of childhood cancer. Br J Cancer. 2013;109(5):1373–1381. doi:10.1038/bjc.2013.428
   PubMed Web of Science ®Google Scholar
• Sansom-Daly UM, Wakefield CE. Distress and adjustment among adolescents and young adults with cancer: an empirical and conceptual review. Transl Pediatr. 2013;2(4):167. doi:10.3978/j.issn.2224-4336.2013.10.06
   PubMedGoogle Scholar
• Hydeman JA, Uwazurike OC, Adeyemi EI, Beaupin LK. Survivorship needs of adolescent and young adult cancer survivors: a concept mapping analysis. J Cancer Surviv. 2019;13(1):34–42. doi:10.1007/s11764-018-0725-5
   PubMed Web of Science ®Google Scholar
• Fardell JE, Wakefield CE, Patterson P, et al. Narrative review of the educational, vocational, and financial needs of adolescents and young adults with cancer: recommendations for support and research. J Adolesc Young Adult Oncol. 2018;7(2):143–147. doi:10.1089/jayao.2017.0086
   PubMed Web of Science ®Google Scholar
• Sisk BA, Fasciano K, Block SD, Mack JW. Impact of cancer on school, work, and financial Independence among adolescents and young adults. Cancer. 2020;126(19):4400–4406. doi:10.1002/cncr.33081
   PubMed Web of Science ®Google Scholar
• Signorelli C, Wakefield CE, Fardell JE, et al. The impact of long-term follow-up care for childhood cancer survivors: a systematic review. Crit Rev Oncol Hematol. 2017;114:131–138. doi:10.1016/j.critrevonc.2017.04.007
   PubMed Web of Science ®Google Scholar
• Sansom‐Daly UM, Wilson CL, Ashton LJ, Wakefield CE, Johnston K, Cohn RJ. Further evidence for the co‐occurrence of adverse health behaviors among childhood cancer survivors. Pediatr Blood Cancer. 2013;60(1):167–168. doi:10.1002/pbc.24305
   PubMed Web of Science ®Google Scholar
• Yan AP, Chen Y, Henderson TO, et al. Adherence to surveillance for second malignant neoplasms and cardiac dysfunction in childhood cancer survivors: a childhood cancer survivor study. J Clin Oncol. 2020;38(15):1711. doi:10.1200/JCO.19.01825
   PubMed Web of Science ®Google Scholar
• Signorelli C, Wakefield C, McLoone JK, et al. Childhood cancer survivorship: barriers and preferences. BMJ Support Palliat Care. 2019;12(e5):e687–e695. doi:10.1136/bmjspcare-2019-002001
   PubMedGoogle Scholar
• Berg C, Stratton E, Esiashvili N, Mertens A, Berg CJ. Young adult cancer survivors’ experience with cancer treatment and follow-up care and perceptions of barriers to engaging in recommended care. J Cancer Educ. 2016;31(3):430–442. doi:10.1007/s13187-015-0853-9
   PubMed Web of Science ®Google Scholar
• Janssen SHM, van der Graaf WTA, van der Meer DJ, Manten-Horst E, Husson O. Adolescent and Young Adult (AYA) cancer survivorship practices: an overview. Cancers. 2021;13(19):4847. doi:10.3390/cancers13194847
   PubMed Web of Science ®Google Scholar
• Howard AF, Kazanjian A, Pritchard S, et al. Healthcare system barriers to long-term follow-up for adult survivors of childhood cancer in British Columbia, Canada: a qualitative study. J Cancer Surviv. 2018;12(3):277–290. doi:10.1007/s11764-017-0667-3
   PubMed Web of Science ®Google Scholar
• Suh E, Daugherty CK, Wroblewski K, et al. General internists’ preferences and knowledge about the care of adult survivors of childhood cancer: a cross-sectional survey. Ann Intern Med. 2014;160(1):11–17. doi:10.7326/M13-1941
   PubMed Web of Science ®Google Scholar
• Psihogios AM, Pauly-Hubbard H, Schwartz L, Ginsberg JP, Hobbie W, Szalda D. Understanding and improving knowledge of cancer survivorship care among college providers. J Cancer Educ. 2018;33(5):1075–1081. doi:10.1007/s13187-017-1208-5
   PubMed Web of Science ®Google Scholar
• Ryan D, Chafe R, Moorehead P. Transition from pediatric to adult aftercare for survivors of pediatric cancer in Newfoundland and Labrador: a qualitative study. Can Med Assoc Open Access J. 2021;9(2):E309–E16.
   Google Scholar
• Oliver A, Mossialos E. Equity of access to health care: outlining the foundations for action. J Epidemiol Community Health. 2004;58(8):655–658. doi:10.1136/jech.2003.017731
   PubMed Web of Science ®Google Scholar
• Gold M. Beyond coverage and supply: measuring access to healthcare in today’s market. Health Serv Res. 1998;33(3 Pt 2):625–684.
   PubMed Web of Science ®Google Scholar
• Levesque J-F, Harris MF, Russell G. Patient-centred access to health care: conceptualising access at the interface of health systems and populations. Int J Equity Health. 2013;12(1):18. doi:10.1186/1475-9276-12-18
   PubMed Web of Science ®Google Scholar
• Hendriks MJ, Harju E, Michel G. The unmet needs of childhood cancer survivors in long-term follow-up care: a qualitative study. Psycho Oncol. 2021;30(4):485–492. doi:10.1002/pon.5593
   PubMed Web of Science ®Google Scholar
• Keegan THM, Tao L, DeRouen MC, et al. Medical care in adolescents and young adult cancer survivors: what are the biggest access-related barriers? J Cancer Surviv. 2014;8(2):282–292. doi:10.1007/s11764-013-0332-4
   PubMed Web of Science ®Google Scholar
• Psihogios AM, Schwartz LA, Deatrick JA, et al. Preferences for cancer survivorship care among adolescents and young adults who experienced healthcare transitions and their parents. J Cancer Surviv. 2019;13(4):620–631. doi:10.1007/s11764-019-00781-x
   PubMed Web of Science ®Google Scholar
• Ferrari A, Stark D, Peccatori F, et al. Adolescents and young adults (AYA) with cancer: a position paper from the AYA Working Group of the European Society for Medical Oncology (ESMO) and the European Society for Paediatric Oncology (SIOPE). ESMO open. 2021;6(2):100096. doi:10.1016/j.esmoop.2021.100096
   PubMed Web of Science ®Google Scholar
• Bowers DC, Adhikari S, El-Khashab YM, Gargan L, Oeffinger KC. Survey of long-term follow-up programs in the United States for survivors of childhood brain tumors. Pediatr Blood Cancer. 2009;53(7):1295–1301. doi:10.1002/pbc.22240
   PubMed Web of Science ®Google Scholar
• Christen S, Vetsch J, Mader L, et al. Preferences for the organization of long-term follow-up in adolescent and young adult cancer survivors. Support Care Cancer. 2016;24(8):3425–3436. doi:10.1007/s00520-016-3157-7
   PubMed Web of Science ®Google Scholar
• Cousineau MR, Kim SE, Hamilton AS, Miller KA, Milam J. Insurance Coverage, and having a regular provider, and utilization of cancer follow-up and noncancer health care among childhood cancer survivors. INQUIRY. 2019;56:0046958018817996. doi:10.1177/0046958018817996
   PubMed Web of Science ®Google Scholar
• DiNofia A, Shafer K, Steacy K, Sadak KT. Parent-perceived facilitators in the transition of care for young adult survivors of childhood cancer. J Pediatr Hematol Oncol. 2017;39(7):e377–e80. doi:10.1097/MPH.0000000000000765
   PubMed Web of Science ®Google Scholar
• Effinger KE, Haardörfer R, Marchak JG, et al. Current pediatric cancer survivorship practices: a report from the Children’s Oncology Group. J Cancer Surviv. 2022;17(4):1–10.
   Web of Science ®Google Scholar
• Ernst M, Brähler E, Faber J, Wild PS, Merzenich H, Beutel ME. A mixed-methods investigation of medical follow-up in long-term childhood cancer survivors: what are the reasons for non-attendance? Front Psychol. 2022;13:846671. doi:10.3389/fpsyg.2022.846671
   PubMed Web of Science ®Google Scholar
• Eshelman-Kent D, Kinahan KE, Hobbie W, et al. Cancer survivorship practices, services, and delivery: a report from the Children’s Oncology Group (COG) nursing discipline, adolescent/young adult, and late effects committees. J Cancer Surviv. 2011;5(4):345–357. doi:10.1007/s11764-011-0192-8
   PubMed Web of Science ®Google Scholar
• Ford JS, Tonorezos ES, Mertens AC, et al. Barriers and facilitators of risk-based health care for adult survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. Cancer. 2020;126(3):619–627. doi:10.1002/cncr.32568
   PubMed Web of Science ®Google Scholar
• Kenney LB, Melvin P, Fishman LN, et al. Transition and transfer of childhood cancer survivors to adult care: a national survey of pediatric oncologists. Pediatr Blood Cancer. 2017;64(2):346–352. doi:10.1002/pbc.26156
   PubMed Web of Science ®Google Scholar
• Klosky JL, Cash DK, Buscemi J, et al. Factors influencing long-term follow-up clinic attendance among survivors of childhood cancer. J Cancer Surviv. 2008;2(4):225–232. doi:10.1007/s11764-008-0063-0
   PubMedGoogle Scholar
• Lupatsch JE, Wengenroth L, Rueegg CS, et al. Follow-up care of adolescent survivors of childhood cancer: the role of health beliefs. Pediatr Blood Cancer. 2016;63(2):318–325. doi:10.1002/pbc.25755
   PubMed Web of Science ®Google Scholar
• Maeda N, Horibe K, Kato K, Kojima S, Tsurusawa M. Survey of childhood cancer survivors who stopped follow-up physician visits. Pediatr Int. 2010;52(5):806–812. doi:10.1111/j.1442-200X.2010.03158.x
   PubMed Web of Science ®Google Scholar
• Mertens AC, Cotter KL, Foster BM, et al. Improving health care for adult survivors of childhood cancer: recommendations from a delphi panel of health policy experts. Health Policy. 2004;69(2):169–178. doi:10.1016/j.healthpol.2003.12.008
   PubMed Web of Science ®Google Scholar
• Milam J, Freyer DR, Miller KA, et al. Project Forward: a Population-Based Cohort Among Young Adult Survivors of Childhood Cancers. JNCI Cancer Spectr. 2021;5(5). doi:10.1093/jncics/pkab068
   PubMed Web of Science ®Google Scholar
• Michel G, Kuehni CE, Rebholz CE, et al. Can health beliefs help in explaining attendance to follow-up care? The Swiss Childhood Cancer Survivor Study. Psycho Oncol. 2011;20(10):1034–1043. doi:10.1002/pon.1823
   PubMed Web of Science ®Google Scholar
• Michel G, Gianinazzi ME, Eiser C, et al. Preferences for long-term follow-up care in childhood cancer survivors. Eur J Cancer Care. 2016;25(6):1024–1033. doi:10.1111/ecc.12560
   PubMed Web of Science ®Google Scholar
• Miller KA, Wojcik KY, Ramirez CN, et al. Supporting long-term follow-up of young adult survivors of childhood cancer: correlates of healthcare self-efficacy. Pediatr Blood Cancer. 2017;64(2):358–363. doi:10.1002/pbc.26209
   PubMed Web of Science ®Google Scholar
• Mobley EM, Kim SE, Cousineau M, et al. Insurance coverage change and survivorship care among young adult survivors of childhood cancer. Health Serv Res. 2022;57(1):159–171. doi:10.1111/1475-6773.13868
   PubMed Web of Science ®Google Scholar
• Sadak KT, Szalda D, Lindgren BR, et al. Transitional care practices, services, and delivery in childhood cancer survivor programs: a survey study of U.S. survivorship providers. Pediatr Blood Cancer. 2019;66(8):e27793. doi:10.1002/pbc.27793
   PubMed Web of Science ®Google Scholar
• Sadak KT, Dinofia A, Reaman G. Patient-perceived facilitators in the transition of care for young adult survivors of childhood cancer. Pediatr Blood Cancer. 2013;60(8):1365–1368. doi:10.1002/pbc.24494
   PubMed Web of Science ®Google Scholar
• Thornton-Benko E, Lie HC, Alvaro F, et al. The role of primary care physicians in childhood cancer survivorship care: multiperspective interviews. Oncologist. 2019;24(5):710–719. doi:10.1634/theoncologist.2018-0103
   PubMed Web of Science ®Google Scholar
• Signorelli C, Wakefield CE, Johnston KA, et al. Re-engage: a novel nurse-led program for survivors of childhood cancer who are disengaged from cancer-related care. J Natl Compr Canc Netw. 2020;18(8):1067–1074. doi:10.6004/jnccn.2020.7552
   PubMed Web of Science ®Google Scholar
• Signorelli C, Wakefield CE, McLoone JK, et al. Models of childhood cancer survivorship care in Australia and New Zealand: strengths and challenges. Asia Pac J Clin Oncol. 2017;13(6):407–415. doi:10.1111/ajco.12700
   PubMed Web of Science ®Google Scholar
• Quillen J, Bradley H, Calamaro C. Identifying barriers among childhood cancer survivors transitioning to adult health care. J Pediatr Oncol Nurs. 2017;34(1):20–27. doi:10.1177/1043454216631953
   PubMed Web of Science ®Google Scholar
• Zebrack BJ, Eshelman DA, Hudson MM, et al. Health care for childhood cancer survivors: insights and perspectives from a Delphi panel of young adult survivors of childhood cancer. Cancer. 2004;100(4):843–850. doi:10.1002/cncr.20033
   PubMed Web of Science ®Google Scholar
• Wadhwa A, Chen Y, Bhatia S, Landier W. Providing health care for patients with childhood cancer and survivors: a survey of pediatric primary care providers. Cancer. 2019;125(21):3864–3872. doi:10.1002/cncr.32391
   PubMed Web of Science ®Google Scholar
• Baird H, Patterson P, Medlow S, Allison KR. Understanding and improving survivorship care for adolescents and young adults with cancer. J Adolesc Young Adult Oncol. 2019;8(5):581–586. doi:10.1089/jayao.2019.0031
   PubMed Web of Science ®Google Scholar
• Cheung CK, Zebrack B. What do adolescents and young adults want from cancer resources? Insights from a Delphi panel of AYA patients. Support Care Cancer. 2017;25(1):119–126. doi:10.1007/s00520-016-3396-7
   PubMed Web of Science ®Google Scholar
• Szalda D, Piece L, Brumley L, et al. Associates of engagement in adult-oriented follow-up care for childhood cancer survivors. J Adolesc Health. 2017;60(2):147–153. doi:10.1016/j.jadohealth.2016.08.018
   PubMedGoogle Scholar
• Force LM, Abdollahpour I, Advani SM, et al. The global burden of childhood and adolescent cancer in 2017: an analysis of the Global Burden of Disease Study 2017. Lancet Oncol. 2019;20(9):1211–1225. doi:10.1016/S1470-2045(19)30339-0
   PubMed Web of Science ®Google Scholar