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)(2007)(2008)(2009)(2010)(2011)(2012)(2013)(2014)(2015)(2016)(2017)(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."
BACKGROUND: Predictive models for earlier diagnosis of Alzheimer's disease and related dementias (ADRD) that rely on variables requiring assessment during an office visit, such as cognitive function, body mass index, or lifestyle factors, may not be broadly applicable, since that level of data may be inaccessible or inefficient. OBJECTIVE: To build a predictive model for earlier diagnosis of ADRD using only administrative claims data to enhance applicability at the health caresystem level. Building on the strength of this approach and knowledge that health care utilization (HCU) is increased before dementia diagnosis, it was hypothesized that previous HCU history would improve predictive ability of the model. METHODS: We conducted a case-control study using data from the OptumLabs Data Warehouse. ADRD was defined using ICD-9-CM codes and prescription fills for antidementia medications. We included individuals with mild cognitive impairment. Cases aged ≥ 18 years with a diagnosis between 2011-2014 were matched to controls without ADRD. HCU variables were incorporated into regression models along with comorbidities and symptoms.RESULTS: The derivation cohort comprised 24,521 cases and 95,464 controls. Final adjusted models were stratified by age. We obtained moderate accuracy (c-statistic = 0.76) for the model among younger (aged < 65 years) adults and poor discriminatory ability (c-statistic = 0.63) for the model among older adults (aged ≥ 65 years). Neurological and psychological disorders had the largest effect estimates. CONCLUSIONS: We created age-stratified predictive models for earlier diagnosis of dementia using information available in administrative claims. These models could be used in decision support systems to promote targeted cognitive screening and earlier dementia recognition for individuals aged < 65 years. These models should be validated in other cohorts.
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.
Introduction: Prior studies have reported higher health care utilization (HCU) leading up to diagnosis of the Alzheimer disease and related dementia (ADRD), but none have assessed variation in HCU by ADRD subtype or examined disease-specific HCU. The objectives of this study were to identify ADRD subtypes and: (1) characterize all-cause and (2) disease-specific HCU during the 3 years preceding diagnosis, and (3) determine if HCU varied by ADRD subtype. Methods: We used data from the OptumLabs Data Warehouse 2008 to 2014 to identify ADRD subtypes (total N=36,838) using an algorithm based on temporal sequencing of diagnoses and provider type. Annual counts of all-cause and disease-specific HCU in each of the 3 years preceding ADRD diagnosis were regressed on ADRD subtypes with mild cognitive impairment (MCI) as the reference group, year, and other variables. Results: HCU increased over time, was highest in the outpatient setting, and varied by ADRD subtype. Compared with MCI, highest HCU was observed in vascular and nonspecific dementia. Compared with MCI, most subtypes had elevated disease-specific HCU. Discussion: Variation in HCU by ADRD subtype points to different pathways to diagnosis and patterns of use.
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