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4 result(s) for "Ryan, Devonne"
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Recruiting patients as partners in health research: a qualitative descriptive study
Plain English summary Increasingly, funders and researchers want to partner with patients in health research, but it can be challenging for researchers to find patient partners. More than taking part in research as participants, patient partners help design, carry out and manage research projects. The goal of this study was to describe ways that patient partners have been recruited by researchers and patient engagement leads (individuals within organizations responsible for promoting and supporting patients as research partners). We talked with researchers and patient engagement leads in Canada and the United Kingdom, as well as a patient representative. We found three ways that could help researchers and patients find each other. One way is a case-by-case basis, where patients are often sought with experience of a health condition that is the focus of the research. The other ways involved directories where projects were posted and could be found by patients and researchers, or a third party matched patients with research projects. We found four recruitment strategies: Social marketing Community outreach Health system Partnering with other organizations (e.g., advocacy groups) There are many influences on finding, selecting and retaining patient partners: patient characteristics, the local setting, the opportunity, work climate, education and support. We hope study results will provide a useful starting point for research teams in recruiting their patient partners. Background Patient engagement in clinical trials and other health research continues to gain momentum. While the benefits of patient engagement in research are emerging, relatively little is known about recruiting patients as research partners. The purpose of this study was to describe recruitment strategies and models of recruiting patients as partners in health research. Methods Qualitative descriptive study. Thirteen patient engagement leads and health researchers from Canada and the United Kingdom, as well as one patient representative from a national patient organization (7 female) completed semi-structured interviews. Results Recruitment infrastructures available to respondents varied, but could be categorized into three models including the traditional, third-party and directory models. Four categories of recruitment strategies were identified, representing multiple ways of recruiting patient partners: social marketing recruitment, community outreach recruitment, health system recruitment, and partnering recruitment. Conclusions Multiple recruitment strategies were identified for engaging patient partners in research, and some common factors influenced recruitment. Study findings contribute to the evidence base in patient engagement and provide guidance for research teams to help identify potential recruitment methods for their patient partners.
Standardizing the categorizations of models of aftercare for survivors of childhood cancer
Background With significant improvements in the survival rates for most childhood cancers, there is increased pressure to determine how follow-up or aftercare for survivors is best structured. Main body Previous work in this area has not been consistent in how it categorizes models of aftercare, which risks confusion between studies and evaluations of different models. The adoption of a standardized method for classifying and describing different models of aftercare is necessary in order to maximize the applicability of the available evidence. We identify some of the different ways models of aftercare have been classified in previous research. We then propose a revised taxonomy which allows for a more consistent classification and description of these models. The proposed model bases the classification of models of aftercare on who is the lead provider, and then collects data on five other key features: which other providers are involved in providing aftercare, where care is provided, how are survivors engaged, which services are provided, and who receives aftercare. Conclusion There is a good deal of interest in the effectiveness of different models of aftercare. Future research in this area would be assisted by the adoption of a shared taxonomy that will allow programs to be identified by their structural type.
The effects of recreational cannabis use on glycemic outcomes and self-management behaviours in people with type 1 and type 2 diabetes: a rapid review
Background Recent surveys of Canadian cannabis users reflect increasing consumption rates, some of whom may have diabetes. However, healthcare providers have limited information resources on the effects of recreational cannabis in people with diabetes. This rapid review was commissioned by Diabetes Canada to synthesize available evidence to guide recommendations for care of people 13 years of age and older who live with diabetes. Methods PubMed, Embase and PsycINFO databases were searched from January 2008 to January 2019. Study selection, data abstraction and quality appraisal were completed by pairs of reviewers working independently and discrepancies were resolved by a third reviewer with pilot tests completed before each stage to ensure consistency. Data collected from included studies were tabulated and summarized descriptively. Results The search resulted in 1848 citations of which 59 publications were selected for screening, resulting in six observational studies (2 full-text articles and 4 conference abstracts) that met the pre-defined criteria for inclusion. Five studies reported higher glycated hemoglobin (HbA1c) in people with type 1 diabetes (T1D) who consumed recreational cannabis. In one study, students aged 17 to 25 years living with T1D self-reported poorer glycemic control and higher HbA1c when smoking cannabis. In one study of adults with T1D, cannabis use within the previous 12 months was associated with almost double the risk of diabetic ketoacidosis compared with no cannabis use (odds ratio [OR] 1.98; confidence interval [CI] [95% CI] 1.01–3.91). Risks for peripheral arterial occlusion and myocardial infarction were found to be higher in people with type 2 diabetes (T2D) who consumed recreational cannabis, and worse renal parameters were also reported in two separate studies of T1D and T2D. Conclusions Recreational cannabis use may negatively impact diabetes metabolic factors and self-management behaviours in people with T1D. In people with T2D, recreational cannabis may increase risks for peripheral arterial occlusion, myocardial infarction and renal disease. However, the evidence base of this rapid review was limited to six observational studies of poor to fair methodological quality, and thus, further robust, higher quality research is required to confirm the potential impact of cannabis on diabetes. Systematic review registration PROSPERO CRD42019122829
Evaluating a Transition Workbook for Childhood Cancer Survivors: a Pilot Study
Many childhood cancer survivors (CCS) could benefit from improved knowledge about their cancer diagnosis, the treatments received, and associated risks during the period when they transition into adult aftercare. Interventions that support the transition from pediatric to adult care have showed high patient satisfaction. We developed an educational workbook, “Life After the Janeway,” to support CCS transition into adult care. We evaluated its understandability, actionability, and overall acceptability, using an online survey based on the Agency for Healthcare Research and Quality’s Patient Education Materials Assessment Tool for Printable Material (PEMAT-P). Ten participants completed the survey. The overall PEMAT-P score was 94.06 (SD ± 7.40). Mean scores for understandability and actionability were 92.83 (SD ± 8.79) and 98.15 (SD ± 5.24) respectively. Interrater reliability found strong agreement across survey items. Participants support efforts to improve transition and felt positive about the intervention. The workbook was shown to be understandable and actionable to likely users. The next steps will focus on delivering the workbook to CCS going through their transition of care and exploring developing the workbook in an electronic format.