دورية أكاديمية
Perceived transition readiness among adolescents and young adults with neurofibromatosis type 1 and plexiform neurofibromas: a cross-sectional descriptive study.
| العنوان: | Perceived transition readiness among adolescents and young adults with neurofibromatosis type 1 and plexiform neurofibromas: a cross-sectional descriptive study. |
|---|---|
| المؤلفون: | Siegel A; Pediatric Oncology Branch, Center for Cancer Research, National Cancer Institute, Bethesda, MD, United States., Lockridge R; Pediatric Oncology Branch, Center for Cancer Research, National Cancer Institute, Bethesda, MD, United States., Struemph KL; Pediatric Oncology Branch, Center for Cancer Research, National Cancer Institute, Bethesda, MD, United States., Toledo-Tamula MA; Pediatric Oncology Branch, Center for Cancer Research, National Cancer Institute, Bethesda, MD, United States., Little P; Pediatric Oncology Branch, Center for Cancer Research, National Cancer Institute, Bethesda, MD, United States., Wolters PL; Pediatric Oncology Branch, Center for Cancer Research, National Cancer Institute, Bethesda, MD, United States., Dufek A; Pediatric Oncology Branch, Center for Cancer Research, National Cancer Institute, Bethesda, MD, United States., Tibery C; Pediatric Oncology Branch, Center for Cancer Research, National Cancer Institute, Bethesda, MD, United States., Baker M; Pediatric Oncology Branch, Center for Cancer Research, National Cancer Institute, Bethesda, MD, United States., Wideman BC; Pediatric Oncology Branch, Center for Cancer Research, National Cancer Institute, Bethesda, MD, United States., Martin S; Pediatric Oncology Branch, Center for Cancer Research, National Cancer Institute, Bethesda, MD, United States. |
| المصدر: | Journal of pediatric psychology [J Pediatr Psychol] 2024 Jun 13; Vol. 49 (6), pp. 383-391. |
| نوع المنشور: | Journal Article |
| اللغة: | English |
| بيانات الدورية: | Publisher: Oxford University Press Country of Publication: United States NLM ID: 7801773 Publication Model: Print Cited Medium: Internet ISSN: 1465-735X (Electronic) Linking ISSN: 01468693 NLM ISO Abbreviation: J Pediatr Psychol Subsets: MEDLINE |
| أسماء مطبوعة: | Publication: 1998- : Cary, NC : Oxford University Press Original Publication: Washington, Society of Pediatric Psychology. |
| مواضيع طبية MeSH: | Neurofibroma, Plexiform*/psychology , Neurofibroma, Plexiform*/therapy , Neurofibromatosis 1*/psychology , Neurofibromatosis 1*/therapy , Transition to Adult Care*, Adolescent ; Female ; Humans ; Male ; Young Adult ; Cross-Sectional Studies ; Surveys and Questionnaires |
| مستخلص: | Objectives: Neurofibromatosis type 1 (NF1) is a genetic cancer predisposition syndrome that can impact multiple organ systems and is associated with plexiform neurofibroma tumors, requiring care from birth through adulthood. Adolescents and young adults (AYAs) with NF1 face several barriers to transition from pediatric to adult care. This cross-sectional study aimed to assess transition readiness in this population and to evaluate relationships between specific NF1 symptoms and transition readiness. Methods: AYAs (aged 16-24) enrolled in existing studies related to NF1 were eligible. AYAs and their parents completed measures of transition readiness (Transition Readiness Assessment Questionnaire version 4 [TRAQ-4]), and AYAs also completed a transition readiness interview (UNC TRxANSITION). Results: Thirty-eight AYAs (mean age = 19.95 ± 2.68 years) participated in the study. Average TRAQ scores indicated that AYAs were still learning Self-Management skills (M = 3.37, SD = 1.08) and Self-Advocacy skills (M = 3.98, SD = 0.67). Older AYAs had higher TRAQ scores for Self-Management (r = 0.70, p < .001) and Self-Advocacy (r = 0.41, p = .011) than younger AYAs. Parents and AYAs had similar TRAQ scores. About one third of AYAs (37.8%, n = 14) expressed uncertainty about how NF1 might affect them in the future. The remaining AYAs mostly expressed concerns regarding tumor growth, pain, or cancer. Conclusions: In this small study, preliminary findings suggest that AYAs with NF1 express confidence in many areas of transition readiness but continue to require support, particularly with Self-Management skills. Given the gaps in understanding of future health risks, AYAs with NF1 would benefit from early assessment, psychoeducation, and support for transition readiness to adult care. (Published by Oxford University Press on behalf of the Society of Pediatric Psychology 2024.) |
| التعليقات: | Comment in: J Pediatr Psychol. 2024 Jun 13;49(6):392-393. doi: 10.1093/jpepsy/jsae030. (PMID: 38613822) |
| References: | Pediatric Health Med Ther. 2023 Feb 09;14:19-32. (PMID: 36798587) Diabetes Care. 2018 Nov;41(11):2281-2288. (PMID: 30131398) Nat Rev Dis Primers. 2017 Feb 23;3:17004. (PMID: 28230061) J Atten Disord. 2021 Jun;25(8):1177-1186. (PMID: 31838937) Neurooncol Adv. 2019 Oct 26;1(1):vdz040. (PMID: 32642668) JAMA Netw Open. 2020 Mar 2;3(3):e201965. (PMID: 32202640) South Med J. 2019 Mar;112(3):190-197. (PMID: 30830235) Pediatrics. 2010 Mar;125(3):566-73. (PMID: 20176665) JAMA Pediatr. 2013 Oct;167(10):939-46. (PMID: 23959392) Am J Clin Oncol. 1982 Dec;5(6):649-55. (PMID: 7165009) Cancer. 2006 Sep 1;107(5):1065-74. (PMID: 16881077) J Pediatr. 2012 Mar;160(3):461-7. (PMID: 21996156) Diabet Med. 2015 Apr;32(4):440-58. (PMID: 25407592) Neuropsychol Rev. 2018 Sep;28(3):317-340. (PMID: 30097761) J Pediatr Psychol. 2011 Mar;36(2):160-71. (PMID: 20040605) Am J Med Genet A. 2013 Apr;161A(4):659-66. (PMID: 23427176) Compr Child Adolesc Nurs. 2023 Sep;46(3):223-239. (PMID: 32969737) Br J Psychiatry. 2020 Nov;217(5):616-622. (PMID: 31159893) Am J Med Genet A. 2022 Feb;188(2):488-497. (PMID: 34731530) J Pediatr Nurs. 2018 Jan - Feb;38:122-126. (PMID: 28941954) Clin Genet. 2015 Nov;88(5):425-30. (PMID: 25534182) Med Decis Making. 2008 Nov-Dec;28(6):845-9. (PMID: 19015286) Am J Med Genet A. 2015 Sep;167A(9):2103-13. (PMID: 25976979) Health Qual Life Outcomes. 2017 Feb 14;15(1):34. (PMID: 28193237) Ren Fail. 2012;34(6):744-53. (PMID: 22583152) J Pediatr Psychol. 2012 Jan-Feb;37(1):85-96. (PMID: 21878430) Inflamm Bowel Dis. 2015 Jul;21(7):1641-51. (PMID: 25966837) Am J Med Genet A. 2020 Jul;182(7):1704-1715. (PMID: 32484306) Dev Med Child Neurol. 2019 Feb;61(2):174-180. (PMID: 29873078) Am J Med Genet A. 2018 May;176(5):1150-1160. (PMID: 29681082) Genet Med. 2021 Aug;23(8):1506-1513. (PMID: 34012067) Genet Med. 2018 Jul;20(7):671-682. (PMID: 30006586) Ann Am Thorac Soc. 2021 Feb;18(2):290-299. (PMID: 32885982) Dev Med Child Neurol. 2006 Dec;48(12):973-7. (PMID: 17109785) Eur J Pediatr. 2014 Feb;173(2):203-12. (PMID: 23959326) Semin Pediatr Neurol. 2006 Mar;13(1):2-7. (PMID: 16818170) Br J Cancer. 2015 Apr 28;112(9):1546-8. (PMID: 25742481) Hematology Am Soc Hematol Educ Program. 2019 Dec 6;2019(1):496-504. (PMID: 31808907) |
| معلومات مُعتمدة: | United States NH NIH HHS; United States CA NCI NIH HHS; United States RC CCR NIH HHS; Intramural Research Program; United States NH NIH HHS; United States CA NCI NIH HHS; Center for Cancer Research, Pediatric Oncology Branch |
| فهرسة مساهمة: | Keywords: adherence/self-management; adolescents; chronic illness; emerging/young adults |
| تواريخ الأحداث: | Date Created: 20240217 Date Completed: 20240613 Latest Revision: 20240627 |
| رمز التحديث: | 20240627 |
| مُعرف محوري في PubMed: | PMC11175589 |
| DOI: | 10.1093/jpepsy/jsae006 |
| PMID: | 38366576 |
| قاعدة البيانات: | MEDLINE |
Full Text Finder | تدمد: | 1465-735X |
|---|---|
| DOI: | 10.1093/jpepsy/jsae006 |