When developing a health technology requiring clinical studies, developers institute working relations with clinical investigators. Patient representatives can also create and manage advisory boards with product developers. Inspired by the model of HIV research in the 1990s, EURORDIS proposes a programme of CABs. EURORDIS invites developers to sign a Charter for collaboration with patients in clinical research, and provides guidelines together with a mentoring and training programme. CABs help set the agenda with the developer, work on topics such as study design, feasibility, informed consent, site selection, QoL and PROMs, and organize the meetings. Discussions cover compassionate use, pricing, relative efficacy, etc. There are confidentiality arrangements and minutes are taken. There are regular teleconferences for trainings and action plan updates. As of 2019, 5 disease-specific CABs exist of approximately 12 members each and others are being formed. We have started to work on the metrics of markers of success. Evaluating the first surveys from 14 distinct CAB meetings with 19 companies shows that this form of shared decisionmaking is valuable as well as ethical for both parties. Working relations continue, even when discussions become heated. All show interest in the co-creation possibilities of such collaboration and we look forward to measuring change via a Tracker. Patients see the utility and dedicate significant time and effort to this initiative during the year (with at least two grueling face-to-face meetings plus work and trainings in between). One CAB member commented, "CAB members can contribute quite more than I expected". One sponsor suggested that they have a "renewed enthusiasm for a patient centric research and development." This patient engagement programme, with collective thinking and exchange between patients and a collaborative mentality from both sides, ensures high quality and constructive dialogue with researchers and developers, and can eventually inform both HTA and regulatory decision-making.
To estimate the years of life lost (YLLs) due to COVID-19 in Colombia and assess its economic impact by valuing the potential years of productive life lost (PYLLs). We conducted an ecological study to estimate the number of premature deaths associated with COVID-19 and calculate the present value of their expected future earnings using a discount rate of 3%. We considered deaths occurred from March to November 9, 2020. We used the modified criteria in the 2010 Global Burden of Disease (GBD) Study to estimate YLLs, adding the deaths for each age group and multiplied by the life expectancy of the respective age group up to the age limit considered. From the human capital approach, we estimated PYLLs to show the number of years of premature deaths caused by COVID-19, when fatalities occurred between 15-64 years old, the timeframe of economically active life for all estimates. We present results in 2020 U.S. dollars. The 32,974 deaths from COVID-19 have produced 697,512 YLLs, of which 66.0% are in men. Around 76.2% of these YLLs occur in people >50 years. On average, each death from COVID-19 contributed 21.2 YLL. The YLLs rate is 1,385 (women: 963; men: 1,787) per 100,000 inhabitants. The mean rate of YLLs in people aged ≥50 years is about ten times that of those <50 years (5,059 vs. 561 per 100,000). Premature deaths in the Colombian economically active population accounted for 89,667 PYLLs (74.6% in men). 58.8% of the PYLLs occurred in the population aged 40-64 years. The economic burden associated with this goes from US$168 to US$306 million (0.05-0.10% of the 2019 gross domestic product). At the end of 2020, COVID-19 would be the leading cause of death in Colombia and the most critical disease burden factor, above cardiovascular diseases, and neonatal disorders.
To identify associated factors to the control of blood pressure (BP), low-density lipoprotein cholesterol (LDL) and glycated hemoglobin (hba1c) in a low-income population from the Caribbean region of Colombia, enrolled in "De todo corazón -DTC" program between 2013-2018
Objectives: PPP is a chronic, debilitating, painful inflammatory skin disease characterized by localized, sterile pustules on the palms of the hands and soles of the feet. By understanding the burden of disease in this population, targeted interventions that improve patient quality of life can be developed. To our knowledge, this study is the first of its kind to describe HCRU in patients with PPP. Methods: Patients were identified as having PPP if they had $1 inpatient or 2 outpatient ICD-10 L40.3 diagnosis codes, separated by 30 to 365 days. All analyses were conducted via the Aetion Evidence Platform TM v3.17, using Optum® Clinformatics TM Data Mart, a US administrative claims database. The study period was from October 1, 2015 to March 31, 2019, with the first diagnosis code marking the index date. A general population matched cohort (MC) of 4:1, based on age and sex, was generated for context. No formal comparisons were conducted. Patient characteristics, treatment, and all-cause HCRU calculated for each visit type (inpatient, outpatient, and emergency department [ED]) during the 12-month follow up (FU) were analyzed. Results: 1291 patients with PPP were identified at baseline, and 708 had $12 months' FU. Compared with the MC, patients with PPP were more likely to have a diagnosis of hyperlipidemia (PPP: 28.7% vs MC: 20.0%), anxiety (PPP: 7.6% vs MC: 5.5%), and depression (PPP: 7.0% vs MC: 5.1%) at baseline. During the 12-month FU, 391 patients with PPP (55.2%) were treated with a systemic therapy (biologic or non-biologic) and had a median of 18.5 outpatient visits, 23.6% of patients had ED visits (median: 1.0), and 10% had inpatient visits (median: 1.0). Conclusions: Patients with PPP have more comorbidities than those in the MC, as well as high HCRU, highlighting an unmet need among these patients.
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