Derm Dispatch: New ICD-10 Code Brings Validation to Patients With Topical Steroid Withdrawal

Kelly Barta, president and executive director of the International Topical Steroid Awareness Network (ITSAN), recently joined Derm Dispatch host Renata Block, DMSc, MMS, PA-C, to discuss the CDC's new ICD-10 code for topical steroid withdrawal (TSW) and the international patient registry ITSAN launched to study the condition. Barta also addressed communication strategies for clinicians treating patients who suspect they are experiencing TSW.

New ICD-10 Code Validates Patient Experience

The ICD-10 code for TSW received CDC approval earlier this year following three formal reviews and a 50-50 split among reviewing board members before ultimately passing with support from the American Academy of Dermatology. Barta said the designation allows clinicians to document the condition in patient records and gives researchers a mechanism to begin tracking incidence and prevalence. She said the code also strengthens ongoing advocacy efforts involving the FDA and clinical care guidelines.

"Having a code in the health system is so much validation for patients," Barta said.

International Patient Registry Aims to Close Research Gaps

ITSAN spent 4 years developing an IRB-approved patient registry with a steering committee of clinicians, researchers and patient advocates. The registry, hosted on the National Organization for Rare Disorders' IAmRare platform, includes 14 longitudinal surveys covering medical history, steroid use and post-cessation treatment. Barta said around 500 participants have joined since the registry launched last December, with a goal of reaching 5,000 globally.

"We spent four years working on developing this with a steering committee of expert clinicians, researchers and patient advocates from around the world," Barta said.

Registry Data May Reveal Regional and Diagnostic Patterns

Barta said the international scope of the registry may help identify regional patterns in TSW incidence, including in areas where topical steroids are available over the counter or used in skin-lightening products. She noted reports estimate 30% of people in some African countries use skin-lightening creams containing high-potency steroids. Barta also said registry data could help differentiate TSW from severe eczema by capturing symptoms specific to withdrawal, including nerve involvement, burning pain and insomnia.

"It's open internationally, and we really hope to see if there are certain patterns in regions like South America, India, Australia or the UK," Barta said.

Terminology and Listening Shape Patient Trust

Barta cited a National Eczema Association and National Psoriasis Foundation survey finding that more than half of patients feel uneasy discussing steroid use with clinicians. She said terms such as misuse, abuse, and steroid phobia can feel blaming to patients who used medications as prescribed. Barta recommended clinicians acknowledge TSW as a real condition and listen to patients before addressing terminology or treatment.

"The best thing a clinician can do is just stop and start listening," Barta said.

"I personally used them for 26 years. I wasn't afraid of using them. I was afraid of not using them and what would happen to my skin," she added.

Barta encouraged dermatologists to direct patients toward the ITSAN registry and website resources, and noted the organization's upcoming TSW summit in Atlanta will include a session for health care professionals covering current research and clinical guidance.

Community Engagement

This weekend, ITSAN is hosting its Healing the Skin We’re in Summit, July 24 and 25 at the Maison Event Center in Duluth, Georgia. The event is geared toward patients living with TSW or eczema, with caregivers and families also welcome. Sessions will be geared toward children aged 2 years and older, with specific sessions for teens and adults. Students, residents, and clinicians are also welcome to attend.

For more on the summit, click here.