Transition Readiness Assessment in Adolescents and Young Adults with Neurofibromatosis Type 1 (NF1).
Neurofibromatosis type 1 (NF1) conveys significant disease morbidity and lower quality of life compared to the general population. Research has shown that decreased positive health outcomes are directly correlated with inadequate development of health-related self-management skills among similar pat...
| Publicado en: | Comprehensive Child & Adolescent Nursing Vol. 46; no. 3; pp. 223 - 240 |
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| Autores principales: | , , , , , |
| Formato: | research tables/charts Journal Article |
| Publicado: |
Taylor & Francis Ltd
Sep2023
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=171339119&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 171339119 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 24694193 K619 jtl: Comprehensive Child & Adolescent Nursing issn: 24694193 maglogo: N pubinfo: dt: Sep2023 vid: 46 iid: 3 pid: 377 pub: Taylor & Francis Ltd place: Philadelphia, Pennsylvania artinfo: ui: 171339119 146071130 171339119 171339119 10.1080/24694193.2020.1806402 171339119 ppf: 223 ppct: 17 formats: fmt: – @attributes: type: T – @attributes: type: P tig: atl: Transition Readiness Assessment in Adolescents and Young Adults with Neurofibromatosis Type 1 (NF1). aug: au: Goetsch Weisman, Allison Haws, Tina Lee, Joanna Lewis, Andrea M. Srdanovic, Nina Radtke, Heather B. affil: Division of Genetics, Birth Defects & Metabolism, Ann and Robert H. Lurie Children's Hospital of Chicago, Chicago, Illinois, USA sug: subj: Neurofibromatosis 1 In Adolescence Transitional Care Neurofibromatosis 1 In Adulthood Adolescence Young Adult Quality of Life Human United States Surveys Self Report Descriptive Statistics Wilcoxon Rank Sum Test Bivariate Statistics Adolescent: 13-18 years ab: Neurofibromatosis type 1 (NF1) conveys significant disease morbidity and lower quality of life compared to the general population. Research has shown that decreased positive health outcomes are directly correlated with inadequate development of health-related self-management skills among similar patient populations, and among these populations a healthcare transition (HCT) intervention improves provision of care and health outcomes. Thus, HCT intervention may improve care and outcomes in NF1. To design a future informed NF1 HCT intervention, baseline transition readiness must be assessed. A survey distributed by Children's Tumor Foundation (CTF) was developed to assess transition readiness and the impact of NF1 on factors of young adult life. A total of 101 participants aged 14–26 years living in the United States completed the survey with a median [IQR] age of 18 [16, 21]. The majority of participants reported that NF1 had significant or some impact on all factors of young adult life including education, career, relationships, and family planning. The median Transition Readiness Assessment Questionnaire (TRAQ) score in this study (3.50/5.00) was significantly lower than the previously published score of healthy peers (3.93/5.00) (p<.001). Higher TRAQ scores correlated with higher NF1-specific transition knowledge and skills (NF1-TRAQ) (r = 0.632). Participants self-report adequate knowledge of NF1 and comfort in talking to medical providers. They report discomfort with appointment keeping, insurance related tasks, addressing NF1 emergencies, and discussing NF1 with non-medical providers and peers. Further, TRAQ and NF1-TRAQ scores were lower in individuals who reported that their diagnosis of NF1 had some or significant impact on education, career, and relationships. Findings demonstrate that among individuals with NF1 in this study, decreased transition readiness is associated with a negative impact on young adult life. Data from this study supports the need to develop NF1-specific HCT intervention tools, with an effort to improve quality of life and standardize NF1 care. pubtype: Academic Journal doctype: research tables/charts Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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