ObjectivesTo develop and examine the content and face validity of the Patient Engagement In Research Scale (PEIRS) for assessing the quality of patient engagement in research projects from a patient partner perspective.MethodsOur team of researchers and patient partners conducted a mixed qualitative and quantitative study in three phases. Participants were English-speaking adult patients (including informal caregivers, family members, and friends) with varying experiences as partners in research projects in Canada. 1) Questionnaire items were generated following thematic analysis of in-depth interviews and published literature. 2) A three-round e-Delphi survey process via email correspondence was undertaken to refine and select the items for a provisional PEIRS. 3) Two rounds of cognitive interviewing elicited participants’ understanding and opinions of each item and the structure of the PEIRS.ResultsOne hundred and twenty items were generated from 18 interviews and organized across eight themes of meaningful engagement of patients in health research to form an initial questionnaire. The e-Delphi survey and cognitive interviewing each included 12 participants with a range of self-reported diseases, health-related conditions, and use of healthcare services. The e-Delphi survey yielded a 43-item provisional PEIRS. The PEIRS was then reduced to 37 items organized across seven themes after 1) refinement of problems in its instructions and items, and 2) the combining of two themes into one.ConclusionsWe developed a 37-item self-reported questionnaire that has demonstrated preliminary content and face validity for assessing the quality of patient engagement in research.
Gavi, the Vaccine Alliance, supports immunisation programmes in eligible countries to reach children with lifesaving vaccines. Dramatic improvement in the scale and performance of current cold chain systems is required to extend the reach of immunisation services - especially for children living in remote locations - to advance progress towards full vaccine coverage. Achieving these improvements will require a healthier market for cold chain equipment where the products meet user needs, are sustainably priced, and are available in sufficient quantities to meet demand. Yet evidence suggests that the cold chain market has suffered from several failures including limited demand visibility, fragmented procurement, and insufficient information exchange between manufacturers and buyers on needs and equipment performance. One of Gavi's strategic goals is to shape markets for vaccines and other immunisation products, including cold chain equipment and in 2015, Gavi created a new mechanism - the Cold Chain Equipment (CCE) Optimisation Platform - to strengthen country cold chain systems by offering financial support and incentives for higher performing CCE. The main objective of the CCE Platform is to get more equipment that is efficient, sustainable, and better performing deployed to every health facility where it is required at an affordable price. To achieve these objectives, Gavi is putting in place tested market shaping approaches and tools adapted for the CCE market: the development of market strategies or 'roadmaps'; improvement of product performance through the development of target product profiles (TPPs); strategic engagement with CCE manufacturers and countries to enhance information sharing; and tailoring procurement tactics to the CCE market. These approaches and tools will allow for increased demand and supply of higher-performing, cost-effective and quality products. By strengthening immunisation systems with improved cold chain equipment, Gavi countries can begin to address the underlying problems limiting vaccine availability and improve the coverage and equity of vaccines.
Background:Esophageal cancer is one of the leading causes of death worldwide. The global increasing rate of this type of cancer requires more attention. The purpose of this study was to determine the overall survival probability of esophageal cancer after diagnosis and to assess the potential risk factors in a population of Iranian patients.Materials and Methods:This retrospective cohort study was conducted on 127 cases with esophageal cancer in the Azarbaijan province, East of Iran. Participants in the study were diagnosed during 2009-2010 and were followed up for 5 years. The event was considered death due to esophageal cancer and those who survived until the end of the study were assumed as right censored. Censored quntile regression was fitted to find the overall survival of the patients using adjusted effects of variables and was compared with Cox regression model.Results:Patients’ mean and median survival time were 16.99 and 10.06 months respectively and 89% off cases died by the end of the study. The 1, 3, 6, 12 and 36-month survival probabilities were 0.95, 0.76, 0.60, 0.43, and 0.18. The median survival time for females and males without surgery were 21.79 and 14.76 month respectively. The accuracy of predictions were 0.99 and 0.74 for the censored quantile regression and Cox, respectively.Conclusion:We concluded that being male, not having surgery, longer wait time between having symptoms and being diagnosed, low socioeconomic status and old age to be significant risk factors in reducing the probability of survival from esophageal cancer.
In May 2016, a wildfire devastated a northern region of Alberta, Canada, resulting in negative consequences on physical and mental stress, social relationships, and overall resilience among Indigenous residents. Research on coping and managing stress following a disaster has failed to incorporate unique characteristics from Indigenous perspectives. Sharing circles were held in urban and rural community settings to capture: (a) Indigenous perspectives of coping, (b) individual and collective strengths that helped Indigenous residents and communities to cope during and after the wildfire, and (c) intergenerational experiences of coping from stress among Indigenous residents. Indigenous residents’ experience with coping from the wildfire was shaped by: (a) heightened physical and emotional stress, (b) existing structural inequities, and (c) strong community cohesion and connection to culture. An unexpected outcome of this research was the therapeutic value of the sharing circles for participants to share their experience.
Background & Objective: Esophageal cancer (EC) has been identified as one of the most common cancers in the northeastern regions of Iran. In our study, parametric non-mixture cure rate model was applied to evaluate the effects of risk factors on the long-term survival of patients with EC in East Azerbaijan, Northeastern Iran. Materials & Methods: This retrospective cohort study of 127 patients with EC registered at Iran National Cancer Registry office in the period 2009-2010. These patients were followed up for 5 years in East Azerbaijan, Iran until 2015. The best parametric cure rate model was identified and the risk factors of survival in patients with EC were measured by Akaike Information Criteria and parametric non-mixture cure rate model, respectively. Results: The survival time of EC patients ranged 0.10-69.03 months. Male sex (Odds Ratio (OR) =0.08, 95% confidence interval (CI: 0.02-0.32, P<0.001), patients who underwent esophagectomy surgery (OR=6.11, 95%CI: 1.46-25.55, P=0.013) had a significant effect on the survival and the cure fraction of EC patients. Population cure rate was 0.11 (95%CI: 0.07-0.19) and cure fraction was estimated 4.9%. Conclusion: The Weibull non-mixture cure rate model was the most appropriate statistical tool to identify potential risk factors that affect both survival and cure fraction of EC patients. It is a recommended tool for analyzing the long-term survival of patients with EC.
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