Pain experiences among those living with hidradenitis suppurativa: a qualitative study.

BACKGROUND: Pain is rated by patients with hidradenitis suppurativa (HS) as the disease's most impactful symptom. HS therapies are often insufficient to control inflammatory disease activity and pain. A better understanding of patient experiences with pain may improve patient-provider relationships and help identify strategies for addressing HS pain. OBJECTIVES: This qualitative study sought to characterize lived pain experiences of those with HS. METHODS: English-speaking patients ≥ 18 years old with a dermatologist-confirmed diagnosis of HS and an average numerical rating scale pain score of ≥ 1 over the preceding week were recruited from a single academic medical centre in Atlanta, Georgia, USA. Semistructured interviews were conducted from November 2019 to March 2020 to explore participants' HS pain experiences and the subsequent impact on their lives. Thematic saturation was reached after interviewing 21 participants. Interviews were audio recorded, transcribed, and analysed using thematic analysis. RESULTS: Among 21 study participants, the median 7-day average pain score was 6 (interquartile range 3-7; scale ranges from 0 to 10, with 10 being most pain). Participants' descriptions of pain were consistent with nociceptive pain, neuropathic pain and itch. Pain impacted multiple life domains, including physical limitations (decreased mobility and impaired sleep), decreased psychological wellbeing (irritability, depression, loss of control, and difficulty communicating pain experiences) and impaired social relationships (social isolation, intimacy problems and difficulty fulfilling social responsibilities). Although participants reported chronic discomfort, acutely painful and unpredictable HS disease flares caused more distress and quality-of-life (QoL) burden. Participants frequently treated their pain without input from the medical team, sometimes with unsafe medication doses or combinations. Factors contributing to self-management of pain included difficulty accessing timely outpatient care during disease flares and fear of stigma from healthcare providers. CONCLUSIONS: When present, HS-related pain may impact not only physical wellbeing but also mental health and relationships. In addition to therapies that target the inflammatory disease burden, treating the symptom of pain may improve patients' QoL and wellbeing. Because patients with HS have difficulty explaining their pain, proactively asking them about pain may identify unmet needs, facilitate better pain control and improve QoL. Further, the influence of HS-related pain on numerous aspects of QoL suggests the need for multidisciplinary, patient-centred approaches to HS pain management.

Patient satisfaction with the Veteran's Administration teledermatology service.

BACKGROUND: Teledermatology is comparable to face-to-face visits in providing accurate diagnoses and effective treatments. However, there are limited data regarding patient satisfaction with teledermatology models that more directly convey provider recommendations to patients. OBJECTIVE: To assess patient satisfaction with the teledermatology service at the Atlanta Veterans Affairs Medical Center (AVAMC). METHODS: A cross-sectional, phone-based questionnaire study of 175 AVAMC teledermatology patients was performed to investigate patient satisfaction. In phase 1 (n = 100), we compared the teleconsultative and telemedicine models. In phase 2 (n = 75), we compared patients who received 1 of 3 possible consult outcomes: reassurance, appointment for biopsy, or appointment for face-to-face evaluation. RESULTS: There were no statistically significant differences in satisfaction between patients who were seen with the telemedicine and teleconsultative models. Patients who received appointments for face-to-face evaluation or biopsy were more satisfied than patients who received reassurance only. Both phases were remarkable for high patient satisfaction among all cohorts. LIMITATIONS: This study was performed at a single Veterans Affairs medical center and is vulnerable to both nonresponse bias and recall bias. CONCLUSION: Overall, patients are satisfied with teledermatology services at the AVAMC. Strong partnership with referring primary care providers and clear delineation of responsibilities is vital to the teledermatology process.

Stratifying clinical complexity of dermatology outpatient visits: Validation of a pilot instrument.

The United States population is aging and increasing in comorbidities, and patient care is accordingly growing increasingly complex. Complexity impacts patterns of resource consumption, adverse event and medical error rates, health-related quality of life, physician burnout, and more. Tools capturing complexity can be of benefit in the modern value-based reimbursement landscape and have been well studied in specialties other than dermatology. In this report, we describe the validation of a tool specific to outpatient dermatologic care that captures the complexity of clinical visit medical decision making. We performed a cross-sectional retrospective study to determine the inter-rater reliability and face validity of the tool. By objectively grading a clinical encounter based on clinical complexity, there is increased awareness of opportunities to improve clinical care, and the allocation of health care costs and resources within the dermatologic community can be better assessed.

Survival and tumor characteristics of patients presenting with single primary versus second primary melanoma lesions.

BACKGROUND: Patients with single primary melanomas have an increased risk of developing subsequent melanomas. Secondary tumors diagnosed within and after 3 months are termed "synchronous" and "asynchronous," respectively. OBJECTIVE: To compare tumor distributions and survival characteristics between patients with second primary melanomas and those with single primary melanomas. METHODS: Retrospective cohort study. Data were collected from an institutional database from 14,029 patients with a diagnosis of a primary melanoma seen between 1970 and 2004. RESULTS: The synchronous and asynchronous cohorts demonstrated significantly improved survival probabilities compared with the single primary cohort (P = .04 and .002, respectively). Single primary lesions (2.2 ± 2.3 mm) were significantly thicker than the first-identified synchronous (2.0 ± 1.7 mm) and asynchronous (1.7 ± 1.3 mm) lesions. Synchronous lesions were more likely to be anatomically concordant compared with asynchronous lesions (55.7% vs 38.2%, P < .001). LIMITATIONS: Single-center study design and incomplete records for second primary melanoma Breslow depth and histopathology. CONCLUSION: Patients with second primary melanomas demonstrated a significant survival advantage and thinner lesions compared with those with single primary melanomas. Our reported tumor distributions support the role of full body skin examinations, with attention to the region of initial diagnosis.

Validation of actinic keratosis diagnosis and treatment codes among veterans living with HIV.

PURPOSE: Actinic keratoses (AK) diagnosis, billing, and pharmacy codes have not been validated among people living with human immunodeficiency virus (HIV), preventing use in epidemiologic and clinical research. We aimed to calculate the positive predictive value (PPV) of AK diagnosis codes, procedural codes for destruction of pre-malignant lesions, and pharmacy codes for topical 5-fluorouracil. METHODS: Patients diagnosed with HIV within the Infectious Disease clinic at the Atlanta Veterans Affairs Medical Center from 1/1/2002 to 8/5/2017 were eligible. Patients were included if they had any of the following: encounters with a diagnosis for AK (International Classification of Diseases [ICD]-9: 702.0; ICD-10: L57.0), procedural codes for destruction of premalignant lesions (Current Procedural Terminology [CPT]: 17000, 17003, and 17004), and prescriptions for topical 5-fluorouracil. PPV and binomial 95% confidence intervals were calculated. RESULTS: PPV was 91.9% (89.1-94.7) for 369 encounters with an AK diagnosis. For procedural codes, PPV was 52.6% (48.1-57.2) for 454 encounters with destruction of 1 pre-malignant lesion, 63.7% (58.4-68.9) for 322 encounters with destruction of 2-14 lesions, and 57.7% (38.7-76.7) for 26 encounters with destruction of 15+ lesions. PPV was 72.9% (63.5-82.4) for 85 encounters with a prescription of topical 5-fluorouracil. CONCLUSION: AK diagnosis codes are appropriate to use in epidemiologic and health policy research among people living with HIV and may be more reliable than destruction of pre-malignant lesion CPT codes.

Tools to study the severity of itch in 8- to 17-year-old children: Validation of TweenItchyQoL and ItchyQuant.

BACKGROUND/OBJECTIVES: Validated pruritus-specific quality of life and self-reported severity instruments exist primarily for adults. Clinical trials to develop therapeutics for children with chronic pruritus are hampered by the paucity of appropriate outcome measures. To address this gap, we aimed to develop validated instruments to measure itch-specific quality of life and self-reported severity in children. METHODS: We conducted in-depth, open-ended interviews of itchy children and generated concepts to develop TweenItchyQoL. We administered TweenItchyQoL, ItchyQuant, a cartoon-annotated self-reported pruritus severity numeric rating scale (NRS), and a non-cartoon NRS to 175 itchy children aged 8-17 years. We analyzed the data for feasibility, preference, reliability, construct validity, and responsiveness. RESULTS: Average completion time was 4.8 minutes for TweenItchyQoL and 33 seconds for ItchyQuant. The majority of patients either preferred ItchyQuant or found no difference between ItchyQuant and the NRS. Cronbach's alpha for TweenItchyQoL total and subscales ranged from 0.84 to 0.95. Test-retest reliability coefficients were ≥0.7 for TweenItchyQoL and 0.4 for ItchyQuant. A 3-dimensional bifactor model was most appropriate (RMSEA = 0.048) on the confirmatory factor analyses. As a function of those reporting worsening, improvement, or no change at their final visit, TweenItchyQoL and ItchyQuant scores in those cohorts changed as expected. CONCLUSIONS: This new set of validated and feasible instruments shows promise to quantify itch severity and QoL impact in older children.

Pruritus assessment tools for 6 to 7-year-old children: KidsItchyQoL and ItchyQuant.

BACKGROUND/OBJECTIVES: Measures of pruritus severity and quality of life (QoL) are necessary for the development of therapeutics for children with chronic pruritus. In children, questionnaires need to be developed for specific age groups given the differences in cognitive levels. In this study, we aimed to develop tools to assess QoL and pruritus severity in children 6 to 7-years-old with chronic pruritus. METHODS: Based on open interviews with children, we developed a cartoon-annotated QoL instrument, KidsItchyQoL, and validated an existing pruritus severity instrument, ItchyQuant, that measures pruritus impact and severity for the preceding week. Both instruments were administered to 100 children aged 6-7 years with chronic pruritus. The data were analyzed for reliability, reproducibility, construct validity, and responsiveness. RESULTS: We found the 14-item KidsItchyQoL to be reliable (Cronbach's α = 0.846) and reproducible (intraclass correlation coefficient (ICC) = 0.66) as was the ItchyQuant (ICC = 0.47). With respect to construct validity, examination of eigenvalues of the inter-item polychoric correlation matrix suggested three dominant factors. A subsequent confirmatory factor analysis suggested that a 3-dimensional simple structure model with correlated factors provided a reasonable data representation. The responsiveness of KidsItchyQoL and ItchyQuant (P = .005, GLM procedure) were demonstrated with scores changing as expected with the self-reported change of itch severity. CONCLUSIONS: These results demonstrate promise for a new set of reliable research tools to assess QoL and pruritus severity in children 6 to 7 years of age.

Clustering of cutaneous T-cell lymphoma is associated with increased levels of the environmental toxins benzene and trichloroethylene in the state of Georgia.

BACKGROUND: Cutaneous T-cell lymphoma (CTCL) is a rare form of non-Hodgkin lymphoma arising in the skin. Geographic clustering of CTCL has recently been reported, but its association with environmental factors is unknown. Benzene and trichloroethylene (TCE) are environmental toxins with carcinogenic properties. The authors investigated associations between geographic clustering of CTCL incidence in the state of Georgia with benzene and TCE exposure. METHODS: The statewide county-level incidence of CTCL within Georgia was obtained from the Georgia Cancer Registry for the years 1999 to 2015. Standardized incidence ratios (SIRs) were calculated by dividing observed cases by expected cases using national incidence rates by age, sex, and race. Clustering of CTCL was analyzed using spatial analyses. County-level concentrations of benzene and TCE between 1996 and 2014 were collected from the Environmental Protection Agency's National Air Toxics Assessment database. Linear regression analyses on CTCL incidence were performed comparing SIRs with levels of benzene and TCE by county. RESULTS: There was significant geographic clustering of CTCL in Georgia, particularly around Atlanta, which was correlated with an increased concentration of benzene and TCE exposure. Among the 4 most populous counties in Georgia, CTCL incidence was between 1.2 and 1.9 times higher than the state average, and benzene and TCE levels were between 2.9 and 8.8 times higher. CONCLUSIONS: The current results demonstrate nonrandom geographic clustering of CTCL incidence in Georgia. To the authors' knowledge, this is the first analysis to identify a correlation between geographic clustering of CTCL and environmental toxic exposures.

No evidence of increased cancer incidence in children using topical tacrolimus for atopic dermatitis.

BACKGROUND: Long-term safety of topical calcineurin inhibitors is not well understood. APPLES (A Prospective Pediatric Longitudinal Evaluation to Assess the Long-Term Safety of Tacrolimus Ointment for the Treatment of Atopic Dermatitis; NCT00475605) examined incidence of lymphoma and other cancers in a pediatric population with atopic dermatitis. OBJECTIVE: To quantify incident malignancies during 10 years in children with atopic dermatitis who used topical tacrolimus for ≥6 weeks. METHODS: Standardized incidence ratios for cancer events were analyzed relative to sex-, age-, and race-matched control data from national cancer registries. RESULTS: There were 7954 eligible patients enrolled at 314 sites in 9 countries. During 44,629 person-years, 6 confirmed incident cancers occurred (standardized incidence ratio, 1.01; 95% confidence interval, 0.37-2.20). No lymphomas occurred. LIMITATIONS: Observational prospective cohort study. CONCLUSION: The cancer incidence was as expected, given matched background data. This finding provides no support for the hypothesis that topical tacrolimus increases long-term cancer risk in children with atopic dermatitis.

Validation of the Three-Item Skindex-Mini Among Hidradenitis Suppurativa Patients With Diverse Racial Backgrounds.

BACKGROUND: Hidradenitis suppurativa (HS) is a chronic inflammatory skin disease that severely impairs patients' quality of life (QoL). Instruments such as the 10-item Dermatology Life Quality Index and 16-item Skindex-16 have been used to assess QoL in HS; however, it is unknown whether the shorter 3-item Skindex-mini can also provide an accurate assessment of skin-related QoL in patients with HS. OBJECTIVES: The aim was to assess how well the Skindex-16 correlates with its shorter adaptation, the Skindex-mini, in capturing QoL among patients with HS. METHODS: This retrospective cross-sectional study included all HS patients seen in the HS Clinic at The Emory Clinic between January 1, 2019, and August 16, 2019. We compared the correlation between the symptom, emotion, and function domains of the Skindex-16 and Skindex-mini using Pearson correlation coefficients (CC). Secondary outcome measures included individual survey item analysis, ItchyQuant scores, and numeric rating scale of pain. RESULTS: We identified 108 encounters among 75 unique hidradenitis suppurativa patients (43 black/African American, 18 white, 5 Asian/Pacific Islander, 3 Latino, 4 Other, 2 unknown). Pearson CC between the Skindex-16 and Skindex-mini domain scores for all encounters were 0.770 (P < .001), 0.787 (P < .001), and 0.801 (P < .001) for the symptom, emotion, and function domains, respectively. The mean pain and ItchyQuant scores were 4.14 (SD 3.31) and 3.55 (SD 3.34), respectively. CONCLUSIONS: The Skindex-mini correlated highly with the Skindex-16 in a racially diverse group of patients with HS. The Skindex-mini is a streamlined QoL instrument that could be practically implemented into routine clinical care among diverse patients presenting to dermatology.

Chemoprevention agents for melanoma: A path forward into phase 3 clinical trials.

Recent progress in the treatment of advanced melanoma has led to unprecedented improvements in overall survival and, as these new melanoma treatments have been developed and deployed in the clinic, much has been learned about the natural history of the disease. Now is the time to apply that knowledge toward the design and clinical evaluation of new chemoprevention agents. Melanoma chemoprevention has the potential to reduce dramatically both the morbidity and the high costs associated with treating patients who have metastatic disease. In this work, scientific and clinical melanoma experts from the national Melanoma Prevention Working Group, composed of National Cancer Trials Network investigators, discuss research aimed at discovering and developing (or repurposing) drugs and natural products for the prevention of melanoma and propose an updated pipeline for translating the most promising agents into the clinic. The mechanism of action, preclinical data, epidemiological evidence, and results from available clinical trials are discussed for each class of compounds. Selected keratinocyte carcinoma chemoprevention studies also are considered, and a rationale for their inclusion is presented. These data are summarized in a table that lists the type and level of evidence available for each class of agents. Also included in the discussion is an assessment of additional research necessary and the likelihood that a given compound may be a suitable candidate for a phase 3 clinical trial within the next 5 years.

Dermatologic care for lesbian, gay, bisexual, and transgender persons: Terminology, demographics, health disparities, and approaches to care.

More than 10 million lesbian, gay, bisexual, and transgender (LGBT) persons live in the United States. Improving their health is a public health priority. LGBT persons have specific health concerns and face health care disparities. Awareness of those issues and disparities can enable dermatologists to provide medically appropriate and culturally competent care to LGBT patients. This review highlights terminology important in caring for LGBT persons, LGBT demographics in the United States, health care disparities faced by LGBT persons, and approaches to caring for LGBT patients.

Dermatologic care for lesbian, gay, bisexual, and transgender persons: Epidemiology, screening, and disease prevention.

Lesbian, gay, bisexual, and transgender (LGBT) persons face important health issues relevant to dermatologists. Men who have sex with men (MSM) are at higher risk of certain infectious diseases, including HIV, syphilis and other sexually transmitted diseases (STDs), methicillin-resistant Staphylococcus aureus infections, and invasive meningococcal disease, and might be at higher risk of non-infectious conditions, including skin cancer. Recommendations for preventive health care, including screening for HIV and other STDs, sexual health-related vaccinations, and HIV pre-exposure prophylaxis, differ for MSM compared with non-MSM. Women who have sex with women experience disparities in STDs, including chlamydia and HPV. Transgender patients have unique, and often unmet, dermatologic needs during gender transition (also called gender affirmation), related to hormonal therapy and gender-affirming surgery. Familiarity with LGBT health issues and disease-prevention guidelines can enable dermatologists to provide medically appropriate and culturally competent care to LGBT persons.

Factors associated with time to surgery in melanoma: An analysis of the National Cancer Database.

BACKGROUND: Timely treatment for melanoma may affect survival, and characterizing the predictors of delay may inform intervention strategies. OBJECTIVE: To determine characteristics associated with the interval between diagnosis and surgery in melanoma. METHODS: The National Cancer Database was used to examine factors associated with the interval between diagnosis and surgery among 213 146 patients with stage I, II, or III cutaneous melanoma. RESULTS: Among privately insured patients, time to surgery was longer for patients aged 50 to 70 years (hazard ratio [HR], 0.96) and older than 70 years (HR, 0.83) compared with those younger than 50 years. In contrast, patients without private insurance experienced a shorter surgical wait time if older (HR for age 50-70 years, 1.07; HR for age >70 years, 1.05). Other factors associated with longer surgical interval included nonwhite race, less education, higher comorbidity burden, advanced stage, and head or neck melanoma location. LIMITATIONS: Use of zip code-level data for income and education level. CONCLUSION: Patients with melanoma experience disparities in timely receipt of surgery.

A provider global assessment quality measure for clinical practice for inflammatory skin disorders.

In our evolving health care system, dermatologists are increasingly being asked to prove the value of care they provide to patients with severe skin diseases. Current quality measures for inflammatory dermatoses have limited validity and feasibility. Through collaboration and a modified Delphi process, International Dermatology Outcome Measures and the American Academy of Dermatology sought to reach consensus on a valid and feasible provider-assessed global disease severity metric to be incorporated into a quality measure for inflammatory dermatoses. To inform the modified Delphi process, a review of the literature was performed, and data were collected on current provider-assessed global disease severity metrics. After literature review, 36 members of International Dermatology Outcome Measures and the American Academy of Dermatology participated in the modified Delphi process to reach consensus on features of the metric. Psoriasis, atopic dermatitis, and acne achieved overwhelming consensus for inflammatory dermatoses that could be measured in a global disease severity metric. Consensus was also reached on the use of a 5-point ordinal scale with descriptors provided through referenced electronic platforms. Expert development of quality measures incorporating this metric and its inclusion in data collection platforms are critical to enabling dermatologists to prove the value of care provided to patients with severe inflammatory dermatoses.