A visit guide for adolescent hidradenitis suppurativa: Bridging the divide between pediatric and adult care.

Challenge

Hidradenitis suppurativa (HS) is a chronic dermatologic illness that is often considered as a disease that affects adults; however, there is a growing understanding that HS among adolescents often goes undiagnosed and undertreated. HS is associated with adolescent depression, and for some individuals living with HS, the pain that results from simply sitting at a desk to do school work is daunting. Adolescents are uniquely vulnerable to disruptions in care because diminished relationships with family or peers and poor academic performance can have a long-lasting impact. Adolescents with HS are asked to face these pivotal challenges when they have limited resources to serve as their own advocates. For example, African American girls between the age of 15 and 17 years are known to face structural barriers to accessing medical care and have the highest prevalence of HS (estimated at 525 per 100,000 vs 28 per 100,000 in the general pediatric population).

Solution

We designed a practical visit guide for dermatologists caring for adolescent patients with moderate-to-severe HS that incorporates the best practices for transitioning to adult care and the management of HS (Table I).2, 3, 4 The visit guide organizes information on care and the transition of care during quarterly clinic visits to be scheduled over 2 years. Additionally, it includes age-specific recommendations from the American Academy of Pediatrics on vaccinations, reproductive health, and screening for elevated body mass index and depression. We included recommendations for monitoring while on adalimumab, which has been approved by the Food and Drug Administration for adolescents with moderate-to-severe disease.

Table I

Visit guide to the management of moderate-to-severe HS∗

Visit activity	Baseline†	3 mo	6 mo	9 mo	12 mo	15 mo	18 mo	21 mo	>24 mo
Severity assessment
HS Hurley staging	•	•	•	•	•	•	•	•	•
T-QoL	•	•	•	•	•	•	•	•	•
BMI screening	•				•				•
Depression screening (PHQ-9)	•		•		•		•		•
Systemic medication monitoring‡
Counsel regarding transitioning specialist care, including identification of adult provider	•				•				•
Laboratory parameters—TB, complete metabolic panel using liver function tests	•				•				•
Assess for active TB and/or other severe or opportunistic infections	•	•	•	•	•	•	•	•	•
Discuss timing for vaccinations commonly required by colleges and employers	•
Contraception and pregnancy counseling
Counsel regarding the process of transitioning care, including identification of reproductive health provider	•				•				•

BMI, Body mass index; HS, hidradenitis suppurativa; PHQ, patient health questionnaire; TB, tuberculosis; T-QoL, teenage quality of life index.

The American Academy of Pediatrics recommendations for the transition of care for pediatric patients with chronic disease start at the age of 12 years. Our recommendations start at the age of 14 years to correspond with around the age of HS onset for most patients with pediatric HS. Given the role of biologics in the management of moderate-to-severe HS, dermatology providers are needed to help ensure that vaccinations are completed following the most up-to-date recommendations for these patients.

Represents clinic visit in which provider initiates the process to begin transition to adult care.

We included recommendations for TB monitoring while on adalimumab, which has been approved by the Food and Drug Administration for adolescents with moderate-to-severe HS.

For patients with HS, care providers should actively partner with patients, their families, and other specialists to improve the transition from a parent-supervised approach to a young adult patient-centered approach. The absence of resources dedicated to pediatric HS may hide the true burden of this disease and missed opportunities to improve the health of young adults. Prospective studies are needed to better understand the barriers that adolescents face during the transitioning of care for chronic skin disorders and the efficacy of proposed solutions, such as visit guides, to improve patient well-being.

Conflicts of interest

None disclosed.