Infection is the second leading cause of death among psoriasis patients on phototherapy or systemic medications. The types of infections associated with psoriasis remain poorly understood. The aim of our study was to determine the risk of opportunistic infection (OI) among patients with psoriasis. We conducted a cohort study of patients with (N=199,700) and without (N=954,315) psoriasis in The Health Improvement Network electronic medical record database. Patients receiving phototherapy or systemic therapy were considered to have moderate-to-severe psoriasis (N=12,442). The OI outcome was defined by a diagnostic code for any one of the following: actinomycosis/nocardia, aspergillosis, BK virus, cytomegalovirus, cryptococcus, systemic mycoses, pneumocystis, progressive multifocal leukoencephalopathy, tuberculosis, and toxoplasmosis. The incidence rates of OI were 1.9, 1.8, and 3.8 per 10,000 person-years for all patients with psoriasis and those with mild and moderate-to-severe disease, respectively, versus 2.1 per 10,000 person-years for those without psoriasis. The most common OI among patients with psoriasis was tuberculosis with an incidence rate of 1.0 per 10,000 person-years. In multivariable Cox proportional hazards regression analyses adjusting for age, gender, body mass index, drinking, comorbid diseases, corticosteroid use, history of infection or hospitalization, and Townsend deprivation score, we found an increased risk of OI among patients with moderate-to-severe psoriasis compared with patients without psoriasis: hazard ratio 1.86 (95% confidence interval, 1.23-2.83). Risk of OI was not increased among patients with mild psoriasis. Our results suggest that increased awareness of OIs, particularly tuberculosis, may be important for psoriasis patients receiving therapies for moderate-to-severe disease.

Electronic health records hold great promise for clinical and epidemiologic research. Undertaking atopic eczema (AE) research using such data is challenging because of its episodic and heterogeneous nature. We sought to develop and validate a diagnostic algorithm that identifies AE cases based on codes used for electronic records used in the UK Health Improvement Network. We found that at least one of five diagnosis codes plus two treatment codes for any skin-directed therapy were likely to accurately identify patients with AE. To validate this algorithm, a questionnaire was sent to the physicians of 200 randomly selected children and adults. The primary outcome, positive predictive value for a physician-confirmed diagnosis of AE, was 86% (95% confidence interval = 80-91). Additional criteria increased the PPV up to 95% but would miss up to 89% of individuals with physician-confirmed AE. The first and last entered diagnosis codes for individuals showed good agreement with the physician-confirmed age at onset and last disease activity; the mean difference was 0.8 years (95% confidence interval = -0.3 to 1.9) and -1.3 years (95% confidence interval = -2.5 to -0.1), respectively. A combination of diagnostic and prescription codes can be used to reliably estimate the diagnosis and duration of AE from The Health Improvement Network primary care electronic health records in the UK.

This 12-month, pragmatic, randomized controlled equivalency trial evaluated whether an online, collaborative connected-health model results in equivalent improvements in quality of life compared with in-person care for psoriasis. Overall, 296 adults with physician-diagnosed psoriasis from ambulatory clinics were randomly assigned to either online or in-person care; all were analyzed for outcomes. In the online group, patients and primary care providers sought dermatologists' care directly and asynchronously online. The in-person group sought care face to face. Interventions did not allow blinding of participants; investigators were blinded during analysis. Across 12 months, for the online group, the mean ± standard deviation decline in Skindex-16 from baseline across follow-up visits was 9.02 ± 20.67 compared with 10.55 ± 23.50 for the in-person group. The difference in Skindex-16 between the two groups was -0.83 (95% confidence interval = -5.18 to 3.51), and this was within the equivalence margin (±7.0). For the online group, the mean ± standard deviation decline in Dermatology Life Quality Index was 1.64 ± 4.34 compared with 1.18 ± 4.77 for the in-person group. The difference in Dermatology Life Quality Index between the two groups was -0.45 (95% confidence interval = -1.29 to 0.38) and was within the equivalence margin (±2.5). In conclusion, the online model was as effective as in-person care in improving quality of life among psoriasis patients. This study was funded by the Patient-Centered Outcomes Research Institute and is registered on clinicaltrials.gov (NCT02358135).

Introduction

To design and implement a novel cloud-based digital platform that allows psoriatic patients and researchers to engage in the research process.

Methods

Citizen Pscientist (CP) was created by the National Psoriasis Foundation (NPF) to support and educate the global psoriatic disease community, where patients and researchers have the ability to analyze data. Psoriatic patients were invited to enroll in CP and contribute health data to a cloud database by responding to a 59-question online survey. They were then invited to perform their own analyses of the data using built-in visualization tools allowing for the creation of "discovery charts." These charts were posted on the CP website allowing for further discussion.

Results

As of May 2017, 3534 patients have enrolled in CP and have collectively contributed over 200,000 data points on their health status. Patients posted 70 discovery charts, generating 209 discussion comments.

Conclusion

With the growing influence of the internet and technology in society, medical research can be enhanced by crowdsourcing and online patient portals. Patient discovery charts focused on the topics of psoriatic disease demographics, clinical features, environmental triggers, and quality of life. Patients noted that the CP platform adds to their well-being and allows them to express what research questions matter most to them in a direct and quantifiable way. The implementation of CP is a successful and novel method of allowing patients to engage in research. Thus, CP is an important tool to promote patient-centered psoriatic disease research.

Introduction

Sleep is essential for overall health and well-being, yet more than one-third of adults report inadequate sleep. The prevalence is higher among people with psoriasis, with up to 85.4% of the psoriatic population reporting sleep disruption. Poor sleep among psoriasis patients is particularly concerning because psoriasis is independently associated with many of the same comorbidities as sleep dysfunction, including cardiovascular disease, obesity, and depression. Given the high prevalence and serious consequences of disordered sleep in psoriasis, it is vital to understand the nature of sleep disturbance in this population. This study was designed to help meet this need by using survey data from Citizen Pscientist, an online patient portal developed by the National Psoriasis Foundation.

Methods

Our analysis included 3118 participants who identified as having a diagnosis by a physician of psoriasis alone or psoriasis with psoriatic arthritis. Demographic information, psoriasis severity and duration, sleep apnea status, smoking and alcohol consumption, itch timing, and sleep characteristics were included. Two separate multivariate logistic regression models in STATA were used to determine whether the presence of psoriatic arthritis, age, gender, body mass index, comorbid sleep apnea, psoriasis severity, timing of worst itch, smoking status, or high-risk alcohol consumption were associated with sleep difficulty or low sleep quantity, defined by the American Academy of Sleep Medicine as less than 7 h of sleep per night on average.

Results

Results from the multivariate logistic regressions found that sleep difficulty was associated with psoriatic arthritis (OR 2.15, 95% CI [1.79-2.58]), female gender (2.03 [1.67-2.46]), obese body mass index (BMI ≥ 30) (1.25 [1.00-1.56]), sleep apnea (1.41 [1.07-1.86]), psoriasis severity of moderate (1.59 [1.30-1.94]) or severe (2.40 [1.87-3.08]), and smoking (1.60 [1.26-2.02]). Low sleep quantity was associated with obese BMI (1.62 [1.29-2.03]), sleep apnea (1.30 [1.01-1.68]), psoriasis severity of moderate (1.41 [1.16-1.72]) or severe (1.40 [1.11-1.76]), and smoking (1.62 [1.31-2.00]). Sleep difficulty and low sleep quantity were not associated with age, alcohol consumption, or timing of worst itch.

Conclusion

These results are potentially meaningful in several aspects. We identify an important distinction between sleep difficulty and sleep quantity in psoriatic disease, whereby having psoriatic arthritis and being female are each associated with sleep difficulty despite no association with low sleep quantity. Furthermore, there is conflicting evidence from prior studies as to whether psoriasis severity is associated with sleep difficulty, but this well-powered, large study revealed a strong, graded relationship between psoriasis severity and both sleep difficulty and low sleep quantity. Overall, our results show that both sleep difficulty and low sleep quantity were associated with multiple factors in this analysis of a large psoriatic cohort. These findings suggest that dermatologists may gather clinically useful information by screening psoriatic patients for trouble sleeping and low sleep quantity to identify potential comorbidities and to more effectively guide disease management.

The National Psoriasis Foundation (NPF) is developing an agenda for patient-centered research to help patients and their caregivers make more informed health care decisions by engaging psoriasis patients in prioritizing comparative effectiveness research (CER) topics. The NPF has created a novel patient-centered research platform known as Citizen Pscientist (CP), allowing patients with psoriasis and psoriatic arthritis to register and contribute their health data. The CP Governance Council administered an online 23-question CER survey to the CP community and held a structured meeting on December 3, 2016, with patients and researchers to review CER survey results and discuss patient-centered research priorities. Of the 2,945 patients surveyed, 792 patients responded. Three CER topics were deemed to be of high priority for the research agenda: 1) Treat-to-target therapy for psoriasis, 2) Psoriatic arthritis screening questionnaires for early detection and treatment of psoriatic arthritis, and 3) Comparative effectiveness of home-based phototherapy for psoriasis.

Importance:Psoriasis is a complex inflammatory skin condition associated with serious medical comorbidities in adults, including obesity, hypertension, dyslipidemia, type 2 diabetes mellitus, psoriatic arthritis, nonalcoholic fatty liver disease, depression, anxiety, and decreased quality of life. Because psoriasis begins in childhood in almost one-third of patients, early identification of risk may be critical to minimizing effects on future health. Objective:To develop the first set of guidelines for comorbidity screening for patients with pediatric psoriasis based on current evidence. Evidence Review:A literature review was performed using PubMed from January 1999 through December 2015. Limiting the search to human studies published in English and removing reviews and editorials produced 153 relevant manuscripts. An expert panel in psoriasis, pediatric dermatology, pediatric rheumatology, pediatric gastroenterology, pediatric endocrinology, and adult and pediatric cardiology used the patient-centered Strength of Recommendation Taxonomy (SORT) method to evaluate and grade the quality of evidence. Findings:Because of the limited number of pediatric studies published on these topics, the strength of the panel's recommendations is classified as SORT level C expert consensus recommendations. The majority of recommendations coincide with those endorsed by the American Academy of Pediatrics for the general pediatric patient but with added attention to signs and symptoms of arthritis, depression, and anxiety. The panel also identified key areas for further investigation. Conclusions and Relevance:Patients with pediatric psoriasis should receive routine screening and identification of risk factors for associated comorbidities. These guidelines are relevant for all health care providers caring for patients with pediatric psoriasis, including primary care clinicians, dermatologists, and pediatric specialists. Because these are the first pediatric guidelines, re-review and refinement will be necessary as studies further detail, and possibly stratify, risk in affected children.

Importance

Innovative, online models of specialty-care delivery are critical to improving patient access and outcomes.

Objective

To determine whether an online, collaborative connected-health model results in equivalent clinical improvements in psoriasis compared with in-person care.

Design, setting, and participants

The Patient-Centered Outcomes Research Institute Psoriasis Teledermatology Trial is a 12-month, pragmatic, randomized clinical equivalency trial to evaluate the effect of an online model for psoriasis compared with in-person care. Participant recruitment and study visits took place at multicenter ambulatory clinics from February 2, 2015, to August 18, 2017. Participants were adults with psoriasis in Northern California, Southern California, and Colorado. The eligibility criteria were an age of 18 years or older, having physician-diagnosed psoriasis, access to the internet and a digital camera or mobile phone with a camera, and having a primary care physician. Analyses were on an intention-to-treat basis.

Interventions

Participants were randomized 1:1 to receive online or in-person care (148 randomized to online care and 148 randomized to in-person care). The online model enabled patients and primary care physicians to access dermatologists online asynchronously. The dermatologists provided assessments, recommendations, education, and prescriptions online. The in-person group sought care in person. The frequency of online or in-person visits was determined by medical necessity. All participants were exposed to their respective interventions for 12 months.

Main outcomes and measures

The prespecified primary outcome was the difference in improvement in the self-administered Psoriasis Area and Severity Index (PASI) score between the online and in-person groups. Prespecified secondary outcomes included body surface area (BSA) affected by psoriasis and the patient global assessment score.

Results

Of the 296 randomized participants, 147 were women, 149 were men, 187 were white, and the mean (SD) age was 49 (14) years. The adjusted difference between the online and in-person groups in the mean change in the self-administered PASI score during the 12-month study period was -0.27 (95% CI, -0.85 to 0.31). The difference in the mean change in BSA affected by psoriasis between the 2 groups was -0.05% (95% CI, -1.58% to 1.48%). Between-group differences in the PASI score and BSA were within prespecified equivalence margins, which demonstrated equivalence between the 2 interventions. The difference in the mean change in the patient global assessment score between the 2 groups was -0.11 (95% CI, -0.32 to 0.10), which exceeded the equivalence margin, with the online group displaying greater improvement.

Conclusions and relevance

The online, collaborative connected-health model was as effective as in-person management in improving clinical outcomes among patients with psoriasis. Innovative telehealth delivery models that emphasize collaboration, quality, and efficiency can be transformative to improving patient-centered outcomes in chronic diseases.

Trial registration

ClinicalTrials.gov Identifier: NCT02358135.