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

Frances O. Ho; Andrea M. Rustad; Ziyou Ren; Lydia R. Khabbaz; Justin M. Knoll; Stephanie M. Rangel; Amy S. Paller

doi:10.1111/pde.15330

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

Frances O. Ho, Andrea M. Rustad, Ziyou Ren, Lydia R. Khabbaz, Justin M. Knoll, Stephanie M. Rangel, Amy S. Paller^*

^*Corresponding author for this work

Dermatology

Research output: Contribution to journal › Article › peer-review

1 Scopus citations

Abstract

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.

Original language	English (US)
Pages (from-to)	621-626
Number of pages	6
Journal	Pediatric dermatology
Volume	40
Issue number	4
DOIs	https://doi.org/10.1111/pde.15330
State	Published - Jul 1 2023

Funding

The authors would like to thank the Foundation for Ichthyosis and Related Skin Types, the Dystrophic Epidermolysis Bullosa Research Association of America, Epidermolysis Bullosa Research Partnership, National Foundation for Ectodermal Dysplasias, and the Tuberous Sclerosis Complex Alliance for their support and assistance with recruitment. Thank you to Dr. Parag Shah, Allison Weisman, MS, and Lauren Witt, APRN-NP for their insight on effective healthcare transition strategies.

Keywords

adolescents
genetic skin conditions
health care transition
survey study
young adults

ASJC Scopus subject areas

Dermatology
Pediatrics, Perinatology, and Child Health

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

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10.1111/pde.15330

Cite this

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title = "Transition readiness in adolescents and young adults with chronic genetic skin conditions",

abstract = "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.",

keywords = "adolescents, genetic skin conditions, health care transition, survey study, young adults",

author = "Ho, {Frances O.} and Rustad, {Andrea M.} and Ziyou Ren and Khabbaz, {Lydia R.} and Knoll, {Justin M.} and Rangel, {Stephanie M.} and Paller, {Amy S.}",

note = "Publisher Copyright: {\textcopyright} 2023 The Authors. Pediatric Dermatology published by Wiley Periodicals LLC.",

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doi = "10.1111/pde.15330",

language = "English (US)",

volume = "40",

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T1 - Transition readiness in adolescents and young adults with chronic genetic skin conditions

AU - Ho, Frances O.

AU - Rustad, Andrea M.

AU - Ren, Ziyou

AU - Khabbaz, Lydia R.

AU - Knoll, Justin M.

AU - Rangel, Stephanie M.

AU - Paller, Amy S.

PY - 2023/7/1

Y1 - 2023/7/1

N2 - 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.

AB - 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.

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

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ASJC Scopus subject areas

UN SDGs

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