Adolescents with genetic skin conditions experience low health care transition readiness

Key takeaways:

• Patients with genetic skin conditions reported lower transition readiness vs. healthy controls (P < .001).
• Public insurance and younger age correlated with low readiness.

Young adolescents with genetic skin conditions encountered worse transition readiness compared with their healthy counterparts and others with chronic conditions, according to a study.

“Health care transition (HCT) occurs when adolescents or young adults move toward an adult model of health care, with a focus on managing their own health needs,” Frances O. Ho, BA, of the department of dermatology at Northwestern University Feinberg School of Medicine in Chicago, and colleagues wrote. “Use and access to health care declines during this transitional period and lack of formal preparation for most U.S. adolescents/young adults results in low transition readiness and poorer health outcomes.”

In this study, researchers measured the level of transition readiness among 45 patients aged 14 to 22 years with genetic skin conditions using 5-point Likert scales, with higher scores indicating increased readiness. Quality of life results from the Children’s Dermatology Life Quality Index (CDLQI) for ages 14 to 17 and the DLQI for ages 18 to 22, HCT readiness from the Transition Readiness Assessment Questionnaire (TRAQ) and adapted non-validated measures of skin knowledge and psychosocial factors were used.

Results showed that patients with genetic skin conditions are less ready for health care transition compared with their healthy counterparts, specifically those aged 14 to 17 years vs. 18 to 22 years.

Overall, participants reported a mean TRAQ score below that of healthy controls (3.3 ± 0.9 vs. 3.9 ± 0.7; P < .001). TRAQ scores were also lower than patients with type 1 diabetes (3.7 ± 0.7; P < .01) and sickle cell disease (3.7 ± 1; P < .05); however, these scores were higher than in patients with spina bifida (2.8 ± 0.8; P < .001) and congenital heart disease (2.9 ± 0.8; P < .01).

Skin knowledge was highly correlated with TRAQ scores (r = 0.61; P < .05). In regard to skin knowledge, patients reported being able to name their skin condition and symptoms, but not their medications and disease causes.

In terms of insurance, private insurance holders showed higher TRAQ scores compared with public insurance holders or those with an unknown insurance status (P < .001).

In contrast, psychosocial factors were not strongly correlated with TRAQ scores (r = .12) but did correlate with poor CDLQI and DLQI scores.

“Through measuring HCT-related skills, skin knowledge and psychosocial factors, we demonstrate that adolescents and young adults with chronic genetic skin conditions have lower transition readiness compared with cohorts of similar age who are healthy or have other chronic conditions,” Ho and colleagues wrote.

The researchers recommended patients with chronic genetic skin conditions receive HCT intervention. They also added that TRAQ is an excellent tool for identifying areas of need for those who will be going through a transition and should begin at age 14.