Engaging Patients and Caregivers in Research for Pediatric Inflammatory Bowel Disease: Top 10 Research Priorities.

INTRODUCTION: Including individuals with lived experience in pediatric inflammatory bowel disease (IBD) is essential to establishing a research agenda that is mutually impactful to both those treating and those experiencing the disease. METHODS: Using the James Lind Alliance approach to research priority setting, a 10-member steering committee composed of current and former pediatric patients with IBD, caregivers, and clinicians was formed. A national survey, disseminated across Canada, elicited uncertainties which were divided into unanswered and answered research questions. Subsequently a research prioritization survey was disseminated where respondents ranked their top 20 research uncertainties. A final prioritization meeting was held to agree upon the top 10 uncertainties. RESULTS: From 1209 research questions submitted by 363 participants, the list was reduced to 105 indicative questions that were within scope and deemed unanswered in the literature. Via the national research prioritization survey, this list was further reduced. The top 10 uncertainties identified at the final research consensus meeting, with 21 participants from all stakeholder groups, included "What are the causes of IBD?," "Can IBD be prevented?," "What role does diet have in the management of pediatric IBD?." Other questions concerned flare ups, biomarkers, optimal patient education, long-term effects of medication and early-diagnosis, role of psychological support, and optimal approach to diagnosis. CONCLUSION: This research adds a unique perspective by deriving a list of pediatric IBD research uncertainties important by patients and caregivers and clinicians.

Monitoring Risk: Tick and Borrelia burgdorferi Public Participatory Surveillance in the Canadian Maritimes, 2012-2020.

Ticks are vectors of many diseases, including Lyme disease (Ld). Lyme disease is an emerging disease in Canada caused by infection with the Lyme borreliosis (Lb) members of the Borrelia genus of spirochaete bacteria, of which Borrelia burgdorferi is regionally the most prevalent. The primary tick vector in central and eastern Canada, Ixodes scapularis, is increasing in numbers and in the geographical extent of established populations. This study documents the distribution of ticks recovered by passive surveillance, and their B. burgdorferi infection prevalence, in three Canadian Maritime provinces from 2012-2020. These regions represent areas in which tick populations are widely established, establishing, and considered non-established. Using a community science approach by partnering with veterinarians and members of the public, we collected over 7000 ticks from the 3 provinces. The three species found most often on companion animals and humans were I. scapularis (76.9%), Ixodes cookei (10.4%) and Dermacentor variabilis (8.9%). The most common hosts were dogs (60.5%), cats (16.8%) and humans (17.6%). As is typical of passive surveillance tick collections, the majority of ticks recovered were adult females; for I. scapularis 90.2%, 5.3%, 3.9% and 0.6% of the total of 5630 ticks recovered for this species were adult females, adult males, nymphs and larvae, respectively. The majority of B. burgdorferi-infected ticks were I. scapularis, as expected. Borrelia infection prevalence in I scapularis was higher in Nova Scotia (20.9%), the province with the most endemic regions, than New Brunswick (14.1%) and Prince Edward Island (9.1%), provinces thought to have established and non-established tick populations, respectively. The province-wide Borrelia infection prevalence generally increased in these latter tow provinces over the course of the study. The host did not have a significant effect on B. burgdorferi infection prevalence; I. scapularis ticks from dogs, cats, humans was, 13.3% (n = 3622), 15.6% (n = 817), 17.9% (n = 730), respectively. No I. scapularis larvae were found infected (n = 33) but B. burgdorferi was detected in 14.8% of both adults (n = 5140) and nymphs (n = 215). The incidence of B. burgdorferi infection also did not differ by engorgement status 15.0% (n = 367), 15.1% (n = 3101) and 14.4% (n = 1958) of non-engorged, engorged and highly engorged ticks, respectively, were infected. In New Brunswick, at the advancing front of tick population establishment, the province-wide infection percentages generally increased over the nine-year study period and all health district regions showed increased tick recoveries and a trend of increased percentages of Borrelia-infected ticks over the course of the study. Within New Brunswick, tick recoveries but not Borrelia infection prevalence were significantly different from endemic and non-endemic regions, suggesting cryptic endemic regions existed prior to their designation as a risk area. Over the 9 years of the study, tick recoveries increased in New Brunswick, the primary study region, and I. scapularis recoveries spread northwards and along the coast, most but not all new sites of recoveries were predicted by climate-based models, indicating that ongoing tick surveillance is necessary to accurately detect all areas of risk. Comparison of tick recoveries and public health risk areas indicates a lag in identification of risk areas. Accurate and timely information on tick distribution and the incidence of Borrelia and other infections are essential for keeping the public informed of risk and to support disease prevention behaviors.