FRINK Linked Data Fragments server

Matches in SemOpenAlex for { <https://semopenalex.org/work/W3088996987> ?p ?o ?g. }

• W3088996987 endingPage "239" @default.
• W3088996987 startingPage "223" @default.
• W3088996987 abstract "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." @default.
• W3088996987 created "2020-10-01" @default.
• W3088996987 creator A5014563144 @default.
• W3088996987 creator A5017415744 @default.
• W3088996987 creator A5017941770 @default.
• W3088996987 creator A5019667401 @default.
• W3088996987 creator A5056965355 @default.
• W3088996987 creator A5078049811 @default.
• W3088996987 date "2020-09-24" @default.
• W3088996987 modified "2023-10-16" @default.
• W3088996987 title "Transition Readiness Assessment in Adolescents and Young Adults with Neurofibromatosis Type 1 (NF1)" @default.
• W3088996987 cites W1858724848 @default.
• W3088996987 cites W1963531498 @default.
• W3088996987 cites W1974290681 @default.
• W3088996987 cites W1981568120 @default.
• W3088996987 cites W1993597474 @default.
• W3088996987 cites W1997560340 @default.
• W3088996987 cites W2035754023 @default.
• W3088996987 cites W2036739578 @default.
• W3088996987 cites W2038836061 @default.
• W3088996987 cites W2051465756 @default.
• W3088996987 cites W2057812793 @default.
• W3088996987 cites W2071427434 @default.
• W3088996987 cites W2083661720 @default.
• W3088996987 cites W2093274439 @default.
• W3088996987 cites W2102163548 @default.
• W3088996987 cites W2106727117 @default.
• W3088996987 cites W2111782036 @default.
• W3088996987 cites W2118872076 @default.
• W3088996987 cites W2128959663 @default.
• W3088996987 cites W2134120929 @default.
• W3088996987 cites W2142991339 @default.
• W3088996987 cites W2193449611 @default.
• W3088996987 cites W2210627122 @default.
• W3088996987 cites W2460077803 @default.
• W3088996987 cites W2565388113 @default.
• W3088996987 cites W2587206911 @default.
• W3088996987 cites W2588295972 @default.
• W3088996987 cites W2753567880 @default.
• W3088996987 cites W2884149818 @default.
• W3088996987 cites W2887457286 @default.
• W3088996987 cites W2887551173 @default.
• W3088996987 cites W2894266514 @default.
• W3088996987 cites W2942362462 @default.
• W3088996987 cites W2945649006 @default.
• W3088996987 cites W3108347842 @default.
• W3088996987 cites W4238868815 @default.
• W3088996987 cites W994110624 @default.
• W3088996987 doi "https://doi.org/10.1080/24694193.2020.1806402" @default.
• W3088996987 hasPubMedId "https://pubmed.ncbi.nlm.nih.gov/32969737" @default.
• W3088996987 hasPublicationYear "2020" @default.
• W3088996987 type Work @default.
• W3088996987 sameAs 3088996987 @default.
• W3088996987 citedByCount "4" @default.
• W3088996987 countsByYear W30889969872021 @default.
• W3088996987 countsByYear W30889969872022 @default.
• W3088996987 countsByYear W30889969872023 @default.
• W3088996987 crossrefType "journal-article" @default.
• W3088996987 hasAuthorship W3088996987A5014563144 @default.
• W3088996987 hasAuthorship W3088996987A5017415744 @default.
• W3088996987 hasAuthorship W3088996987A5017941770 @default.
• W3088996987 hasAuthorship W3088996987A5019667401 @default.
• W3088996987 hasAuthorship W3088996987A5056965355 @default.
• W3088996987 hasAuthorship W3088996987A5078049811 @default.
• W3088996987 hasConcept C118552586 @default.
• W3088996987 hasConcept C142724271 @default.
• W3088996987 hasConcept C15744967 @default.
• W3088996987 hasConcept C159110408 @default.
• W3088996987 hasConcept C160735492 @default.
• W3088996987 hasConcept C162324750 @default.
• W3088996987 hasConcept C205545832 @default.
• W3088996987 hasConcept C2778984943 @default.
• W3088996987 hasConcept C2779951463 @default.
• W3088996987 hasConcept C2780665704 @default.
• W3088996987 hasConcept C2908647359 @default.
• W3088996987 hasConcept C50522688 @default.
• W3088996987 hasConcept C512399662 @default.
• W3088996987 hasConcept C71924100 @default.
• W3088996987 hasConcept C74909509 @default.
• W3088996987 hasConcept C99454951 @default.
• W3088996987 hasConceptScore W3088996987C118552586 @default.
• W3088996987 hasConceptScore W3088996987C142724271 @default.
• W3088996987 hasConceptScore W3088996987C15744967 @default.
• W3088996987 hasConceptScore W3088996987C159110408 @default.
• W3088996987 hasConceptScore W3088996987C160735492 @default.
• W3088996987 hasConceptScore W3088996987C162324750 @default.
• W3088996987 hasConceptScore W3088996987C205545832 @default.
• W3088996987 hasConceptScore W3088996987C2778984943 @default.
• W3088996987 hasConceptScore W3088996987C2779951463 @default.
• W3088996987 hasConceptScore W3088996987C2780665704 @default.
• W3088996987 hasConceptScore W3088996987C2908647359 @default.
• W3088996987 hasConceptScore W3088996987C50522688 @default.
• W3088996987 hasConceptScore W3088996987C512399662 @default.
• W3088996987 hasConceptScore W3088996987C71924100 @default.
• W3088996987 hasConceptScore W3088996987C74909509 @default.
• W3088996987 hasConceptScore W3088996987C99454951 @default.
• W3088996987 hasFunder F4320306649 @default.
• W3088996987 hasIssue "3" @default.

• next