The main objective of this study was to identify the facilitators of and barriers to the transition from pediatric to adult care for adolescents and young adults (AYAs) with cancer according to physicians and nurses working in oncology. The secondary objectives were (1) to explore the viewpoints of health care professionals (HCPs) on this transition and (2) to discover HCP’s needs and the needs they perceive among AYAs and their parents.
Methods:
Semistructured interviews were conducted with 19 HCPs to discover their experiences with pediatric to adult care transitions. Thematic analysis was then conducted.
Results:
Participants reported that transitioning is a complex process influenced by numerous barriers and facilitators, which can be classified into four themes: (1) balancing the needs and relationships of the three actors involved in the transition process, (2) factors that enable HCPs to determine the ideal time for transitions, (3) institutional and organizational barriers and facilitators that challenge HCPs, and (4) HCPs’ reflections on defining and improving the transition process.
Conclusion:
Beyond the lack of human and financial resources, which hinders the structuring of transitions, our results suggest the need for a paradigm shift. That is, the position given to AYAs in pediatrics before the transition needs to evolve so that they are gradually positioned at the center of the relationship with HCPs and, therefore, are the focus of care and the transition process. This will enable them to acquire the skills, knowledge, and autonomy needed for a successful transition to adult care.
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References
1.
CroninKA, ScottS, FirthAU, et al.Annual report to the nation on the status of cancer, part 1: National cancer statistics. Cancer, 2022; 128(24):4251–4284; doi: 10.1002/cncr.34479
2.
BlumRWM, GarellD, HodgmanCH, et al.Transition from child-centered to adult health-care systems for adolescents with chronic conditions: A position paper of the society for adolescent medicine. J Adolesc Health, 1993; 14(7):570–576; doi: 10.1016/1054-139X(93)90143-D
3.
RadtkeHB, BergerA, SkeltonT, et al.Neurofibromatosis type 1 (NF1): Addressing the transition from pediatric to adult care. Pediatric Health Med Ther, 2023; 14:19–32; doi: 10.2147/PHMT.S362679
4.
SandquistM, DavenportT, MonacoJ, et al.The transition to adulthood for youth living with rare diseases. Children (Basel), 2022; 9(5):710; doi: 10.3390/children9050710
5.
WhiteP, SchmidtA, ShorrJ, et al.Six core elements of health care transition. In: Got Transition, The National Alliance to Advance Adolescent Health. Got transition: Washington, DC; 2020.
6.
ZucchettiG, CiappinaS, BelliniS, et al.The creation of a transition protocol survey for childhood, adolescent, and young adult cancer survivors in transition from pediatric to adult health care in Italy. J Adolesc Young Adult Oncol, 2022; 11(2):202–210; doi: 10.1089/jayao.2021.0037
7.
SchwartzLA, TuchmanLK, HobbieWL, et al.A social-ecological model of readiness for transition to adult-oriented care for adolescents and young adults with chronic health conditions. Child Care Health Dev, 2011; 37(6):883–895; doi: 10.1111/j.1365-2214.2011.01282.x
8.
PrussienKV, CrosbyLE, FaustHL, et al.An updated equitable model of readiness for transition to adult care: Content validation in young people with sickle cell disease. JAMA Pediatr, 2024; 178(3):274–282; doi: 10.1001/jamapediatrics.2023.5914
9.
ReissJ, GibsonR. Health care transition: Destinations unknown. Pediatrics, 2002; 110(6 Pt 2):1307–1314.
10.
ArnettJJ. Emerging adulthood: A theory of development from the late teens through the twenties. Am Psychol, 2000; 55(5):469–480; doi: 10.1037/0003-066X.55.5.469
11.
LeprinceT, SauveplaneD, RicadatE, et al.Aspects psychosociaux et développementaux des AJA atteints de cancer: Existe-t-il des spécificités propres aux jeunes adultes? Bull Cancer, 2016; 103(12):990–998; doi: 10.1016/j.bulcan.2016.10.013
12.
HeathG, FarreA, ShawK. Parenting a child with chronic illness as they transition into adulthood: A systematic review and thematic synthesis of parents’ experiences. Patient Educ Couns, 2017; 100(1):76–92; doi: 10.1016/j.pec.2016.08.011
13.
BashoreLM. Young adults with risk factors for chronic disease: Transition needs for survivors of childhood cancer. Crit Care Nurs Clin North Am, 2011; 23(2):311–322; doi: 10.1016/j.ccell.2011.02.002
14.
ViolaAS, Levonyan-RadloffK, MastersonM, et al.Development of a self-management and peer-mentoring intervention to improve transition readiness among young adult survivors of pediatric cancer: Formative Qualitative Research Study. JMIR Form Res, 2022; 6(8):e36323; doi: 10.2196/36323
15.
KenneyLB, MelvinP, FishmanLN, et al.Transition and transfer of childhood cancer survivors to adult care: A national survey of pediatric oncologists: Kenney. Pediatr Blood Cancer, 2017; 64(2):346–352; doi: 10.1002/pbc.26156
16.
SeigneurE. Les Pédiatres Face à La Transition En Onco-Hématologie Pédiatrique: «une Attache Qu’on Ne Peut Pas Défaire». In: Grandir, Se Séparer et Devenir Adulte Après Le Traitement d’un Cancer Durant l’enfance Ou l’adolescence. These de doctorat: Paris 7; 2014.
17.
Speller-BrownB. Transitioning from pediatric to adult care in sickle cell disease: An innovative nurse-led model. In: Worldwide Successful Pediatric Nurse-Led Models of Care. (BetzCL. eds.) Springer International Publishing: Cham; 2023; pp. 159–173; doi: 10.1007/978-3-031-22152-1_9
18.
OtthM, DenzlerS, KoenigC, et al.Transition from pediatric to adult follow-up care in childhood cancer survivors—A systematic review. J Cancer Surviv, 2021; 15(1):151–162; doi: 10.1007/s11764-020-00920-9
19.
WoodDL, SawickiGS, MillerMD, et al.The Transition Readiness Assessment Questionnaire (TRAQ): Its factor structure, reliability, and validity. Acad Pediatr, 2014; 14(4):415–422; doi: 10.1016/j.acap.2014.03.008
20.
TongA, SainsburyP, CraigJ. Consolidated criteria for reporting qualitative research (COREQ): A 32-item checklist for interviews and focus groups. Int J Qual Health Care, 2007; 19(6):349–357; doi: 10.1093/intqhc/mzm042
21.
KimMS. Doing social constructivist research means making empathic and aesthetic connections with participants. Eur Early Child Educ Res J, 2014; 22(4):538–553; doi: 10.1080/1350293X.2014.947835
22.
GuestG, BunceA, JohnsonL. How many interviews are enough?: An experiment with data saturation and variability. Field Methods, 2006; 18(1):59–82; doi: 10.1177/1525822X05279903
23.
BraunV, ClarkeV, HayfieldN. “A starting point for your journey, not a map”: Nikki hayfield in conversation with virginia braun and victoria clarke about thematic analysis. Qual Res Psychol, 2022; 19(2):424–445; doi: 10.1080/14780887.2019.1670765
24.
TobinGA, BegleyCM. Methodological rigour within a qualitative framework. J Adv Nurs, 2004; 48(4):388–396; doi: 10.1111/j.1365-2648.2004.03207.x
25.
TuffordL, NewmanP. Bracketing in qualitative research. Qual Soc Work, 2012; 11(1):80–96; doi: 10.1177/1473325010368316
26.
American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians-American Society of Internal Medicine. A consensus statement on health care transitions for young adults with special health care needs. Pediatrics, 2002; 110(Supplement_3):1304–1306.
27.
McCannL, KearneyN, WengströmY. “It’s just going to a new hospital that’s it.” or is it? An experiential perspective on moving from pediatric to adult cancer services. Cancer Nurs, 2014; 37(5):E23–E31; doi: 10.1097/NCC.0b013e3182a40f99
28.
Rosenberg-YungerZRS, KlassenAF, AminL, et al.Barriers and facilitators of transition from pediatric to adult long-term follow-up care in childhood cancer survivors. J Adolesc Young Adult Oncol, 2013; 2(3):104–111; doi: 10.1089/jayao.2013.0003
29.
ZucchettiG, CiappinaS, Dionisi-ViciM, et al.Emotional distress, self-management skills, and expectations among adolescents and young adult childhood cancer survivors in transition from pediatric to adult care: A brief report. J Adolesc Young Adult Oncol, 2023; 12(6):906–911; doi: 10.1089/jayao.2022.0166
30.
DiNofiaA, ShaferK, SteacyK, et al.Parent-perceived facilitators in the transition of care for young adult survivors of childhood cancer. J Pediatr Hematol Oncol, 2017; 39(7):e377–e380; doi: 10.1097/MPH.0000000000000765
31.
HendersonTO, FriedmanDL, MeadowsAT. Childhood cancer survivors: Transition to adult-focused risk-based care. Pediatrics, 2010; 126(1):129–136; doi: 10.1542/peds.2009-2802
32.
HendersonTO, NathanPC. Childhood cancer survivors: Considerations for surgeons in the transition from pediatric to adult care. Semin Pediatr Surg, 2015; 24(2):93–99; doi: 10.1053/j.sempedsurg.2015.01.007
33.
JohnsonM. Evidence-Based Guidelines Development for the Successful Transition of Young Adult Childhood Cancer Survivors to Adult Care Providers. Mary Couts Burnett Library; 2019.
