Defining patient-centered research priorities in pediatric dermatology.

BACKGROUND/OBJECTIVES: Patient and caregiver perspectives are critical in understanding dermatologic disease impact, presentation, and management in children. The Pediatric Dermatology Research Alliance (PeDRA) Patient Advisory Committee (PtAC), a group of patient representatives and parents of children with cutaneous disease, pursued a multistep, iterative, consensus-building process to identify comprehensive, high-priority research needs. METHODS: Building on discussions at the 2020 PeDRA Annual Conference, a research prioritization survey was developed and completed by PtAC members. Survey themes were aggregated and workshopped by the PtAC through a series of facilitated calls. Emerging priorities were refined in collaboration with additional PeDRA patient community members at the 2021 PeDRA Annual Conference. Subsequently, a final actionable list was agreed upon. RESULTS: Fourteen PtAC members (86.7% female) representing patients with alopecia areata, atopic dermatitis, vascular birthmarks, congenital melanocytic nevi, ectodermal dysplasias, epidermolysis bullosa, Gorlin syndrome, hidradenitis suppurativa, ichthyosis, pemphigus, psoriasis, Sturge-Weber syndrome, and pachyonychia congenita completed the survey. Following serial PtAC meetings, 60 research needs were identified from five domains: psychosocial challenges, health care navigation/disease management, causes/triggers, treatments to preserve or save life, and treatments to preserve or save quality of life. CONCLUSIONS: Many pediatric dermatology research priorities align across affected communities and may drive meaningful, patient-centric initiatives and investigations.

Dermatologic health literacy in underserved communities: a case report of south Los Angeles middle schools.

BACKGROUND: The incidence of melanoma and other skin cancers has risen drastically in the United States.  As with most types of cancer, the prognosis and survival rates are significantly improved with early diagnosis, but dismal for patients who present with advanced disease.  It remains a fact that although melanoma is most common in Caucasian populations, ethnic minorities have a worse prognosis. Our hypothesis in this dermatologic health literacy study was that before necessary education, the required fund of knowledge with respect to skin cancer risk is lacking in several ethnic communities, but that intended compliance occurs when educational intervention occurs. METHODS: Three middle schools in South Los Angeles with predominantly Latino and African American youth were surveyed. Permission was obtained from the principals of the middle schools for the multi-day educational initiative. A total of 150 students were ultimately recruited and a pre-intervention survey administered. After preliminary review of the pre-intervention dermatologic health literacy results, a set of "core" learning concepts about sun safety were summarized and solidified for incorporation into the adolescent-appropriate sun safety protection pamphlet that was designed by designers at UCLA/Johnson & Johnson Health Care Institute. A full day of education on skin disease and the importance of sun protection from an early age was executed, followed three months later by a post-intervention visit that assessed compliance with the sun protection products and intended future use. RESULTS:   Results from the pre- and post-intervention surveys/questionnaires were analyzed and interpreted. Of 150 pre-intervention surveys that were distributed, 54 identified as African American and 96 of whom identified as Latino. Of these, 75% of Latino students reported having a sunburn in the last year, whereas only 38.9% of African American students reported a sunburn.  A total of 80% of the students reported as least some use of sunscreen in the 3 months prior to the post-intervention survey.  Only 8% of African American students reported "everyday" use, whereas 24% of Latino students reported "everyday" use (P < 0.05).  A total of 94% of the students intend to wear sunscreen in the future (89% of African American students and 97% of Latino students, with a P < 0.05 calculated using a two-sample t test).  However, it should be noted that more than half (54%) of the total students reported that although they planned to apply the sunscreen daily, they deemed it too expensive, which might prevent consistent future use. CONCLUSIONS: Our hypothesis in this dermatologic health literacy study was that before necessary education, the required fund of knowledge with respect to skin cancer risk is lacking in several ethnic communities, but that intended compliance occurs when educational intervention occurs.  The data, both quantitative and qualitative, demonstrate that our hypothesis is substantiated.

The Utility of Text Message Reminders for Acne Patients: A Pilot Study.

BACKGROUND: Acne vulgaris is one of the three most common cutaneous disorders, affecting approximately 50 million people in the US and many more throughout the world. OBJECTIVE: We designed a pilot program to explore how patients may interact with cell phone technology to supplement medical care beyond patient reminders that would encompass education, interaction, and data capturing. METHODS: Twenty-four patients completed a 3-month study in which participants received daily text message reminders for the first 2 weeks of the study, then once weekly thereafter, to take their oral medication or apply topical therapy either once or twice daily. RESULTS: Over a 3-month time period, patients become less responsive to text message reminders over time. Our survey data demonstrated a very high satisfaction with the program, helping patients follow their acne treatment recommendations (mean score 4.31 out of 5) and results demonstrated the mobile application device was easy to use (mean score 4.56 out of 5). LIMITATIONS: Small sample size of the patient population. CONCLUSION: Patients find this approach acceptable and helpful, and it is a viable method for counseling patients. Based on our results, for future randomized controlled studies, we suggest maximizing messaging during the first month of therapy.