Characteristics of hospitalizations and emergency department visits due to generalized pustular psoriasis in the United States.

OBJECTIVES: Generalized pustular psoriasis (GPP) is a rare and severe, inflammatory skin disease. GPP is characterized by recurrent flares that consist of disseminated erythematous skin rash with sterile neutrophil-filled pustules that can result in an emergency department (ED) visit or hospital stay due to systemic complications. This study characterizes hospitalizations, ED visits, and inpatient treatment due to GPP in the United States (US). METHODS: A descriptive, retrospective cross-sectional analysis was conducted in Cerner Health Facts, a US electronic medical record database. Hospitalizations and ED visits were identified between 1 October 2015 and 1 July 2017. Visits were included in the study if they were GPP-related, defined as a GPP diagnosis (ICD-10-CM code: L40.1) in the first or second position at admission or discharge, and if the discharge date was within the study period. Hospitalizations and ED visits were the units of analysis. Demographics, comorbidities, medication use, and outcomes were characterized with descriptive statistics. Outcomes included length of stay, intensive care unit (ICU) admission, and death. RESULTS: A total of 71 GPP-related hospitalizations and 64 GPP-related ED visits were included in the study. Other specified inflammatory skin conditions (OSICS)/skin and subcutaneous tissue infections (54%/34%), fluid and electrolyte disorders (46%), hypertension (30%), septicemia (24%), and acute renal failure (18%) were the most frequently coded conditions accompanying a GPP-related hospitalization. OSICS/skin and subcutaneous tissue infections (47%/42%) were the most commonly coded conditions accompanying a GPP-related ED visit. Medication use during GPP-related hospitalizations included topicals (triamcinolone (42%); clobetasol (17%)), systemic corticosteroids (prednisone (20%); methylprednisolone (11%)), and non-biologic and biologic immunosuppressants (cyclosporine (6%); methotrexate (4%); etanercept (1%)). Analgesics (acetaminophen 67%; morphine 24%), and antibiotics (vancomycin 21%) were also common. The median length of stay for hospitalizations was 5 days. Three hospitalizations included an ICU admission and two hospitalizations resulted in death. CONCLUSIONS: The presence of concurrent immune-mediated conditions, and frequent prescribing of analgesics, including opioids, illustrate the burden of GPP in patients requiring acute and inpatient care.

Economic burden of generalized pustular psoriasis and palmoplantar pustulosis in the United States.

OBJECTIVE: To estimate healthcare resource utilization (HCRU) and economic burden of generalized pustular psoriasis (GPP) and palmoplantar pustulosis (PPP) in a commercially insured population the United States (US). METHODS: Adult patients with a GPP or PPP diagnosis were identified between April 1, 2016 and August 1, 2019 in the IQVIA PharMetrics Plus database. Patients required continuous enrollment in medical and pharmacy benefits 6 months before and ≥2 months after the index diagnosis. GPP and PPP cohorts were exactly matched 1:3 on demographics and index date to a plaque psoriasis and a control cohort of the general population. All-cause HCRU and cost measures (direct medical and pharmacy) were reported as per patient per month (PPPM). Generalized linear models estimated adjusted cost ratios between matched cohorts, controlling for comorbidities. RESULTS: HCRU was high among GPP and PPP patients. Rates of inpatient visits were 4 times higher in GPP patients and 2 times higher in PPP patients compared to their matched cohorts. GPP patients experienced significantly higher total healthcare costs compared to matched cohorts (GPP vs plaque psoriasis: cost ratio 1.36, 95% confidence interval (1.22, 1.50); GPP vs control: 5.58 (3.73, 8.36)). PPP patients had significantly higher total healthcare costs compared to the general population (4.11 (3.31, 5.11)), while costs were comparable to plaque psoriasis patients (1.06 (0.97, 1.16)). CONCLUSIONS: GPP and PPP patients have significant economic burden due to higher direct medical and pharmacy costs. Further investigation is needed to better understand the drivers of economic burden in patients with GPP and PPP, and how HCRU and costs are impacted by disease severity.

Defining Patient Engagement in Research: Results of a Systematic Review and Analysis: Report of the ISPOR Patient-Centered Special Interest Group.

OBJECTIVES: Lack of clarity on the definition of "patient engagement" has been highlighted as a barrier to fully implementing patient engagement in research. This study identified themes within existing definitions related to patient engagement and proposes a consensus definition of "patient engagement in research." METHODS: A systematic review was conducted to identify definitions of patient engagement and related terms in published literature (2006-2018). Definitions were extracted and qualitatively analyzed to identify themes and characteristics. A multistakeholder approach, including academia, industry, and patient representation, was taken at all stages. A proposed definition is offered based on a synthesis of the findings. RESULTS: Of 1821 abstracts identified and screened for eligibility, 317 were selected for full-text review. Of these, 169 articles met inclusion criteria, from which 244 distinct definitions were extracted for analysis. The most frequently defined terms were: "patient-centered" (30.5%), "patient engagement" (15.5%), and "patient participation" (13.4%). The majority of definitions were specific to the healthcare delivery setting (70.5%); 11.9% were specific to research. Among the definitions of "patient engagement," the most common themes were "active process," "patient involvement," and "patient as participant." In the research setting, the top themes were "patient as partner," "patient involvement," and "active process"; these did not appear in the top 3 themes of nonresearch definitions. CONCLUSION: Distinct themes are associated with the term "patient engagement" and with engagement in the "research" setting. Based on an analysis of existing literature and review by patient, industry, and academic stakeholders, we propose a scalable consensus definition of "patient engagement in research."