Transition readiness in adolescents and young adults with chronic genetic skin conditions.

Autor: Ho FO; Department of Dermatology, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA., Rustad AM; Department of Dermatology, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA., Ren Z; Department of Dermatology, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA., Khabbaz LR; Department of Dermatology, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA., Knoll JM; Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA., Rangel SM; Department of Dermatology, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA., Paller AS; Department of Dermatology, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA.
Jazyk: angličtina
Zdroj: Pediatric dermatology [Pediatr Dermatol] 2023 Jul-Aug; Vol. 40 (4), pp. 621-626. Date of Electronic Publication: 2023 Apr 20.
DOI: 10.1111/pde.15330
Abstrakt: Background/objectives: Healthcare transition (HCT) refers to movement from pediatric to adult healthcare models. Lack of HCT preparation contributes to poor health outcomes. This study measures readiness to transition in individuals with genetic skin conditions.
Methods: Participants signed IRB-approved consents/assents. Participants ages 14-22 years with genetic skin disorders were surveyed with measures of QoL (Children's Dermatology Life Quality Index/CDLQI or DLQI) and HCT readiness using the Transition Readiness Assessment Questionnaire (TRAQ) and adapted non-validated measures of Skin Knowledge and Psychosocial Factors (5 = highest readiness). Mean TRAQ was compared with historical data on controls and other chronic conditions (t-tests) and correlated (Pearson) with Skin Knowledge and Psychosocial. Multivariable regression compared demographics and QoL with transition readiness.
Results: A total of 45 participants were enrolled (mean age 17.8 years, 67% female, 71% White; disorders of cornification [n = 31], ectodermal dysplasias [n = 7], epidermolysis bullosa [n = 4], tuberous sclerosis [n = 3]). Mean TRAQ (3.3 ± 0.9) was lower than controls (3.9; p < .001) and some chronic disorders (sickle cell [3.7; p < .05], type 1 diabetes [3.7; p < .01]), but higher than with spina bifida (2.8; p < .001) and congenital heart disease (2.9; p < .01). Mean Skin Knowledge was 4.2 ± 1.0, and mean Psychosocial was 3.4 ± 0.8. TRAQ correlated strongly with Skin Knowledge (r = .61; p < .05), but not Psychosocial (r = .12; p = .6). Ages 14-17 years versus 18-22 years and public versus private insurance predicted lower TRAQ scores. Poor DLQI predicted higher TRAQ and Skin Knowledge, but poor DLQI and CDLQI predicted lower Psychosocial.
Conclusions: Adolescents and young adults with genetic skin disorders demonstrated low transition readiness, especially among younger-aged and lower socioeconomic groups. We recommend a HCT intervention to improve health outcomes.
(© 2023 The Authors. Pediatric Dermatology published by Wiley Periodicals LLC.)
Databáze: MEDLINE
Externí odkaz: