Bridging dermatologists with patient advocacy organizations through smartphones.

IMPORTANCE: Patient advocacy organizations seek to increase their benefits for patients with skin disease; low awareness and patient referrals among dermatologists have presented an obstacle to this. OBJECTIVE: To determine whether the Skin Advocate iPhone App would increase awareness and referrals to patient advocacy organizations in the Coalition of Skin Diseases (CSD) among Texas dermatologists and dermatology residents and patient registrations among CSD member organizations. DESIGN, SETTING, AND PARTICIPANTS: We present results of an institutional review board-exempted investigation conducted among member organizations of the CSD and among dermatologists and dermatology residents in Texas from April 1, 2011, through March 31, 2013. Effects were measured in a blinded fashion subjectively through pre-intervention and post-intervention surveys and objectively through internal analytics that tracked downloads and use of the iPhone app, as well as pre-intervention and post-intervention numbers of registrations for CSD member organizations. INTERVENTION: The Skin Advocate iPhone App. MAIN OUTCOMES AND MEASURES: Awareness and referrals to patient advocacy organizations in the CSD among Texas dermatologists and dermatology residents and patient registrations among CSD member organizations. RESULTS: Throughout the study, mean app use ranged from 3.3 to 3.6 uses per user per month, maintaining the 3-fold improvement compared with self-reported referral for 90% of the study population and a 12-fold improvement for 64% of the study population. Our data revealed substantial improvement in self-reported physician awareness and referrals, and increased patient registrations for CSD organizations. CONCLUSIONS AND RELEVANCE: The Skin Advocate iPhone App improved physician awareness and subsequent referrals to CSD member organizations.

Reliability assessment and validation of the postacne hyperpigmentation index (PAHPI), a new instrument to measure postinflammatory hyperpigmentation from acne vulgaris.

BACKGROUND: There are no validated outcome measures for postinflammatory hyperpigmentation (PIH). OBJECTIVE: We sought to determine the reliability and validity of an outcome measure for PIH after acne in patients with skin of color. METHODS: A postacne hyperpigmentation index (PAHPI) was developed. Six raters scored 21 patients with PIH twice. Reliability was determined within and between raters, whereas validity was evaluated by comparing scores with severity ranking by an independent dermatologist. The pigment intensity scores were compared with the melanin index of each patient using a narrowband reflectance spectrophotometer. A quality-of-life score (Skindex-29) was also compared with PAHPI scores. RESULTS: Total PAHPI scores showed good reliability within and between raters and were valid when compared with clinical severity and melanin indices. Good correlation was achieved between the total PAHPI score and the emotion subscale of the Skindex-29. LIMITATIONS: Generalizability of results is limited to African American females. CONCLUSION: The PAHPI shows good reliability and validity when scored on patients with PIH from acne vulgaris. The PAHPI also correlates well with the emotional impact of PIH as measured by the Skindex-29. Future studies should assess the ability of the PAHPI to change with improvement of PIH from acne after treatment.

Stakeholders in cutaneous investigation: patients and patient advocates are essential.

A diverse array of stakeholders supports biomedical investigation, the major goal of which is to improve human health. For patients with dermatological disease, the Coalition of Skin Diseases (CSD) has for more than two decades provided a base from which public advocacy, education, fund-raising, and communication have flourished. Their efforts, combined with that of investigators and national funding agencies, have advanced scientific enterprise and, ultimately, human health.

Distinct autoimmune syndromes in morphea: a review of 245 adult and pediatric cases.

OBJECTIVE: To determine the prevalence of extracutaneous manifestations and autoimmunity in adult and pediatric patients with morphea. DESIGN: A retrospective review of 245 patients with morphea. SETTING: University of Texas Southwestern Medical Center-affiliated institutions. Patients Patients with clinical findings consistent with morphea. MAIN OUTCOME MEASURES: Prevalence of concomitant autoimmune diseases, prevalence of familial autoimmune disease, prevalence of extracutaneous manifestations, and laboratory evidence of autoimmunity (antinuclear antibody positivity). Secondary outcome measures included demographic features. RESULTS: In this group, adults and children were affected nearly equally, and African Americans were affected less frequently than expected. The prevalence of concomitant autoimmunity in the generalized subtype of morphea was statistically significantly greater than that found in all other subtypes combined (P = .01). Frequency of a family history of autoimmune disease showed a trend in favor of generalized and mixed subgroups. The linear subtype showed a significant association with neurologic manifestations, while general systemic manifestations were most common in the generalized subtype. Antinuclear antibody positivity was most frequent in mixed and generalized subtypes. CONCLUSIONS: High prevalences of concomitant and familial autoimmune disease, systemic manifestations, and antinuclear antibody positivity in the generalized and possibly mixed subtypes suggest that these are systemic autoimmune syndromes and not skin-only phenomena. This has implications for the management and treatment of patients with morphea.