Perceived transition readiness among adolescents and young adults with neurofibromatosis type 1 and plexiform neurofibromas: a cross-sectional descriptive study.

IF 2.7 3区 心理学 Q2 PSYCHOLOGY, DEVELOPMENTAL Journal of Pediatric Psychology Pub Date : 2024-06-13 DOI:10.1093/jpepsy/jsae006
Atara Siegel, Robin Lockridge, Kari L Struemph, Mary Anne Toledo-Tamula, Paige Little, Pamela L Wolters, Anne Dufek, Cecilia Tibery, Melissa Baker, Brigitte C Wideman, Staci Martin
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Abstract

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.

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患有 1 型神经纤维瘤病和丛状神经纤维瘤的青少年和年轻人的过渡准备意识:一项横断面描述性研究。
目的:神经纤维瘤病 1 型(NF1)是一种遗传性癌症易感综合征,可影响多个器官系统,并与丛状神经纤维瘤肿瘤有关,从出生到成年都需要护理。患有 NF1 的青少年和年轻人(AYAs)在从儿科护理过渡到成人护理的过程中面临着一些障碍。这项横断面研究旨在评估这一人群的过渡准备情况,并评估特定 NF1 症状与过渡准备情况之间的关系:参加现有 NF1 相关研究的青少年(16-24 岁)均符合条件。青少年及其父母完成了过渡准备度量(过渡准备评估问卷第 4 版 [TRAQ-4]),青少年还完成了过渡准备度量访谈(UNC TRxANSITION):38 名青少年(平均年龄为 19.95±2.68 岁)参加了研究。TRAQ 平均得分表明,青少年仍在学习自我管理技能(M = 3.37,SD = 1.08)和自我辩护技能(M = 3.98,SD = 0.67)。老年亚健康者在自我管理(r = 0.70,p < .001)和自我倡导(r = 0.41,p = .011)方面的 TRAQ 分数高于年轻亚健康者。父母和亚裔青少年的 TRAQ 分数相似。约三分之一的青少年(37.8%,n = 14)对 NF1 在未来可能对他们产生的影响表示不确定。其余的青少年大多对肿瘤生长、疼痛或癌症表示担忧:在这项小型研究中,初步结果表明,NF1 青少年患者对过渡准备的许多方面表示有信心,但仍然需要支持,特别是自我管理技能方面的支持。鉴于对未来健康风险的认识存在差距,患有 NF1 的青少年将受益于早期评估、心理教育和支持,以做好向成人护理过渡的准备。
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来源期刊
Journal of Pediatric Psychology
Journal of Pediatric Psychology PSYCHOLOGY, DEVELOPMENTAL-
CiteScore
6.00
自引率
11.10%
发文量
89
期刊介绍: The Journal of Pediatric Psychology is the official journal of the Society of Pediatric Psychology, Division 54 of the American Psychological Association. The Journal of Pediatric Psychology publishes articles related to theory, research, and professional practice in pediatric psychology. Pediatric psychology is an integrated field of science and practice in which the principles of psychology are applied within the context of pediatric health. The field aims to promote the health and development of children, adolescents, and their families through use of evidence-based methods.
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