Lessons learned from conducting a community-based, nurse-led HIV prevention trial with youth experiencing homelessness: Pivots and pitfalls.

OBJECTIVE: This article highlights key lessons learned while conducting a nurse-led community-based HIV prevention trial with youth experiencing homelessness (YEH), focusing on sexually transmitted infections testing and treatment, intervention sessions, community partnerships, and participant recruitment and retention. DESIGN: The insights and experiences shared aim to inform future research and the design of interventions targeting populations at high risk, particularly when facing unanticipated challenges. By addressing these areas, the article contributes to the decision-making for the design and delivery of effective strategies to improve the health outcomes among marginalized populations. RESULTS: The findings underscore the importance of flexibility and active participant engagement, cultivating strong relationships with community partners, utilizing technology and social media, and fostering a diverse research team that represents the heterogeneity of youth experiencing homelessness across race/ethnicity, gender identity, sexual orientation, and lived experiences. CONCLUSIONS: These recommendations aim to enhance participant access, engagement, and retention, while promoting rigorous research and meaningful study outcomes for YEH.

Development and evaluation of trigger tools to identify pediatric blood management errors.

BACKGROUND: Pediatric patient blood management (PBM) programs require continuous surveillance of errors and near misses. However, most PBM programs rely on passive surveillance methods. Our objective was to develop and evaluate a set of automated trigger tools for active surveillance of pediatric PBM errors. MATERIALS AND METHODS: We used the Rand-UCLA method with an expert panel of pediatric transfusion medicine specialists to identify and prioritize candidate trigger tools for all transfused blood products. We then iteratively developed automated queries of electronic health record (EHR) data for the highest priority triggers. Two physicians manually reviewed a subset of cases meeting trigger tool criteria and estimated each trigger tool's positive predictive value (PPV). We then estimated the rate of PBM errors, whether they reached the patient, and adverse events for each trigger tool across four years in a single pediatric health system. RESULTS: We identified 28 potential triggers for pediatric PBM errors and developed 5 automated trigger tools (positive patient identification, missing irradiation, unwashed products despite prior anaphylaxis, transfusion lasting >4 hours, over-transfusion by volume). The PPV for ordering errors ranged from 38-100%. The most frequently detected near miss event reaching patients was first transfusions without positive patient identification (estimate 303, 95% CI: 288-318 per year). The only adverse events detected were from over-transfusions by volume, including 4 adverse events detected on manual review that had not been reported in passive surveillance systems. DISCUSSION: It is feasible to automatically detect pediatric PBM errors using existing data captured in the EHR that enable active surveillance systems. Over-transfusions may be one of the most frequent causes of harm in the pediatric environment.

Disparities in clinical trial enrollment at a Canadian comprehensive cancer center: A 15-year retrospective study.

INTRODUCTION: Disparities in clinical trials (CTs) enrollment perpetuate inequities in treatment access and outcomes, but there is a paucity of Canadian data. The objective of this study was to examine disparities in cancer CT enrollment at a large Canadian comprehensive cancer center. METHODS: Retrospective study of CT enrollment among new patient consultations from 2006 to 2019, with follow-up to 2021 (N = 154,880), with the primary outcome of enrollment as a binary variable. Factors associated with CT enrollment were evaluated using multivariable Bayesian hierarchical logistic regression with random effects for most responsible physician (MRP) and geography, adjusted for patient characteristics (sex, age, language, geography, and primary care provider [PCP]), area-level marginalization (residential instability, material deprivation, dependency, and ethnic concentration), disease (cancer site and stage), and MRP (department, sex, language, and training). A sensitivity analysis of the cumulative incidence of enrollment was conducted to account for differences in disease type and follow-up length. RESULTS: CT enrollment was 11.2% overall, with a 15-year cumulative incidence of 18%. Lower odds of enrollment were observed in patients who were female (adjusted odds ratio [AOR], 0.82; 95% confidence interval [CI], 0.78-0.86), ≥65 years (AOR vs. <40, 0.61; 95% CI, 0.56-0.66), non-English speakers (0.72; 95% CI, 0.67-0.77), living ≥250 km away (AOR vs. <15 km, 0.71; 95% CI, 0.62-0.80), and without a PCP. Disease characteristics accounted for the largest proportion of observed variation (20.8%), with significantly greater odds of enrollment in patients with genitourinary cancers and late-stage disease. CONCLUSION: Significant sociodemographic disparities were observed, suggesting the need for targeted strategies to increase diversity in access to cancer CTs in Canada.

Impact of research activity on performance of general practices: a qualitative study.

BACKGROUND: There is evidence that engaging in research is directly associated with better performance. If this relationship is to be strengthened, it is necessary to understand the mechanisms which might underlie that relationship. AIM: To explore the perspectives of staff and wider stakeholders about mechanisms by which research activity might impact on the performance of general practices. DESIGN & SETTING: Qualitative study using semi-structured interviews with general practice professionals and wider stakeholders in England. METHOD: Individual interviews with 41 purposively sampled staff in 'research ready' or 'research active' general practices and 21 other stakeholders. Interviews were independently coded by three researchers using a Framework approach. RESULTS: Participants described potential 'direct' and 'indirect' impacts on their work. 'Direct' impacts included research changing practice work (eg, additional records searches for particular conditions), bringing in additional resources (eg, access to investigations or staff) and improving relationships with patients. 'Indirect' impacts included job satisfaction (eg, perception of practice as a centre of excellence and innovation, and the variety afforded by research activity reducing burnout) and staff recruitment (increasing the attractiveness of the practice as a place to work). Respondents identified few negative impacts. CONCLUSIONS: Staff and stakeholders identified a range of potential impacts of research activity on practice performance, with impacts on their working lives most salient. Negative impacts were not generally raised. Nevertheless, respondents generally discussed potential impacts rather than providing specific examples of those impacts. This may reflect the type of research activity conducted in general practice, often led by external collaborators.

Decision Regret Following the Choice of Surgery or Active Surveillance for Small, Low-Risk Papillary Thyroid Cancer: A Prospective Cohort Study.

Background: It is important to understand cancer survivors' perceptions about their treatment decisions and quality of life. Methods: We performed a prospective observational cohort study of Canadian patients with small (<2 cm) low-risk papillary thyroid cancer (PTC) who were offered the choice of active surveillance (AS) or surgery (Clinicaltrials.gov NCT03271892). Participants completed a questionnaire one year after their treatment decision. The primary intention-to-treat analysis compared the mean decision regret scale total score between patients who chose AS or surgery. A secondary analysis examined one-year decision regret score according to treatment status. Secondary outcomes included quality of life, mood, fear of disease progression, and body image perception. We adjusted for age, sex, and follow-up duration in linear regression analyses. Results: The overall questionnaire response rate was 95.5% (191/200). The initial treatment choices of respondents were AS 79.1% (151/191) and surgery 20.9% (40/191). The mean age was 53 years (standard deviation [SD] 15 years) and 77% (147/191) were females. In the AS group, 7.3% (11/151) of patients crossed over to definitive treatment (two for disease progression) before the time of questionnaire completion. The mean level of decision regret did not differ significantly between patients who chose AS (mean 22.4, SD 13.9) or surgery (mean 20.9, SD 12.2) in crude (p = 0.730) or adjusted (p = 0.29) analyses. However, the adjusted level of decision regret was significantly higher in patients who initially chose AS and crossed over to surgery (beta coefficient 10.1 [confidence interval; CI 1.3-18.9], p = 0.02), compared with those remaining under AS. In secondary adjusted analyses, respondents who chose surgery reported that symptoms related to their cancer or its treatment interfered with life to a greater extent than those who chose AS (p = 0.02), but there were no significant group differences in the levels of depression, anxiety, fear of disease progression, or overall body image perception. Conclusions: In this study of patients with small, low-risk PTC, the mean level of decision regret pertaining to the initial disease management choice was relatively low after one year and it did not differ significantly for respondents who chose AS or surgery.

Crohn's Disease Phenotypes and Associations With Comorbidities, Surgery Risk, Medications and Nonmedication Approaches: The MAGIC in IMAGINE Study.

BACKGROUND: We aimed to establish a cohort of persons with Crohn's disease (CD) enrolled from 14 Canadian centers to describe the contemporary presentation of CD in Canada. METHODS: All enrollees were at least 18 years old and underwent chart review for phenotype documentation by Montreal Classification at time of enrollment, comorbidities, inflammatory bowel disease (IBD) and other surgeries, and use IBD and other therapies. RESULTS: Of 2112 adults, 59% were female, and the mean age was 44.1 (+/-14.9SD) years. The phenotype distribution was B1 = 50.4%, B2 = 22.4%, B3 = 17.3%, and missing information = 9.9%. Perineal disease was present in 14.2%. Pertaining to disease location, 35.2% of patients had disease in L1, 16.8% in L2, 48% in L3, and 0.4% in L4. There was no difference in phenotype by gender, anxiety score, depression score. Disease duration was significantly different depending on disease behavior type (B1 = 12.2 ±â€…10.1; B2 = 19.4 ±â€…12.9; B3 = 18.9 ±â€…11.8, P < .0001). Isolated colonic disease was much less likely to be fibrostenotic or penetrating than inflammatory disease. Penetrating disease was more likely to be associated with ileocolonic location than other locations. Perineal disease was most commonly seen in persons with B3 disease behavior (24%) than other behaviors (11% B1; 20% B2 disease, P < .0001) and more likely to be seen in ileocolonic disease (L3;19%) vs L2 (17%) and L1 (11%; P < .0001). Surgery related to IBD occurred across each behavior types at the following rates: B1 = 23%, B2 = 64%, and B3 = 74%. Inflammatory bowel disease-related surgery rates by location of disease were L1 = 48%, L2 = 21%, and L3 = 51%. CONCLUSIONS: In exploring this large contemporary CD cohort we have determined that inflammatory disease is the main CD phenotype in Canada and that CD-related surgery remains very common.

The Women@Heart NS Pilot Project: Rationale and Design of a Community-Based Peer Support Program for Women Living With Heart Disease in Nova Scotia.

Cardiac rehabilitation is associated with lower mortality and improved psychosocial outcomes. However, disparities exist in referral and access to cardiac rehabilitation for Nova Scotian women, a situation exacerbated by the COVID-19 pandemic. Women@Heart (W@H) is a 4-month community-based peer support program developed and validated by the University of Ottawa Heart Institute, for women living with heart disease. The program aims to empower women with coping strategies, provide a supportive learning environment, and establish volunteer advocacy groups. The primary objective of this study is to evaluate the implementation feasibility of the W@H program for women living in Nova Scotia. The primary outcome is the implementation feasibility of W@H in Nova Scotia, measured through participant attendance and program completion rates. Peer leaders will record participant attendance. The psychosocial impact of W@H will be assessed using psychometric tools that measure the following: social support, adaptive coping, stress, symptoms of anxiety and depression, and health-related and disease-specific quality of life. Data will be collected using a pre- and post-program questionnaire administered to participants. The pilot program is expected to commence in the first quarter of 2024. One peer leader with lived experience of heart disease, who has previously completed the W@H program as a participant, has been trained. Participants have been identified through healthcare provider referral, self-referral, brochures, and peer-networking. Each cohort will consist of 5-10 participants. The W@H pilot project will assess the implementation feasibility and the impact of community-based peer support on the well-being of Nova Scotian women living with heart disease.

La réadaptation cardiaque est associée à une mortalité plus faible et à des bienfaits psychosociaux. Cependant, il existe des disparités en ce qui a trait à l'orientation et à l'accès à la réadaptation cardiaque pour les femmes de la Nouvelle-Écosse, une situation exacerbée par la pandémie de COVID-19. Femmes@Cœur est un programme de soutien collectif par les pairs, créé et validé par l'Institut de cardiologie de l'Université d'Ottawa, à l'intention des femmes atteintes d'une maladies du cœur. Le programme vise à autonomiser les femmes en leur proposant des stratégies d'adaptation, à leur fournir un environnement propice à l'apprentissage et à former des groupes de bénévoles pour la défense de leurs intérêts. La présente étude a pour principal objectif d'évaluer la faisabilité de la mise en œuvre du programme Femmes@Cœur pour les femmes de la Nouvelle-Écosse. Le critère d'évaluation principal de l'étude est la faisabilité de la mise en œuvre du programme Femmes@Cœur en Nouvelle-Écosse, déterminée par la mesure des taux de participation et d'achèvement du programme. Des responsables parmi les pairs consigneront la présence des participantes. Les répercussions psychosociales du programme Femmes@Cœur seront évaluées à l'aide d'outils psychométriques mesurant une gamme de paramètres : soutien social, stratégies d'adaptation, niveau de stress, symptômes d'anxiété et de dépression, et qualité de vie liée à la santé et à la maladie en question. Les données seront recueillies au moyen de questionnaires administrés aux participantes avant et après le programme, et le projet pilote devrait être lancé le premier trimestre de 2024. Une responsable parmi les pairs, elle-même atteinte d'une maladie du cœur et ayant déjà pris part au programme Femmes@Cœur en tant que participante, a été formée à cet effet. Les participantes ont été trouvées de diverses façons : orientation par un professionnel de la santé, inscription spontanée, brochures et réseautage entre pairs. Chaque cohorte sera par ailleurs composée de 5 à 10 participantes. Enfin, le projet pilote Femmes@Cœur évaluera la faisabilité de la mise en œuvre et les répercussions du soutien collectif entre pairs sur le bien-être des femmes de la Nouvelle-Écosse atteintes de maladies cardiaques.

CaRE@ELLICSR: Effects of a clinically integrated, group-based, multidimensional cancer rehabilitation program.

BACKGROUND: Although oncology clinical practice guidelines recognize the need and benefits of exercise, the implementation of these services into cancer care delivery remains limited. We developed and evaluated the impact of a clinically integrated 8-week exercise and education program (CaRE@ELLICSR). METHODS: We conducted a mixed methods, prospective cohort study to examine the effects of the program. Each week, participants attended a 1-h exercise class, followed by a 1.5-h education session. Questionnaires, 6-min walk tests (6MWT), and grip strength were completed at baseline (T0), 8 weeks (T1), and 20 weeks (T2). Semi-structured interviews were conducted with a sub-sample of participants about their experience with the program. RESULTS: Between September 2017 and February 2020, 277 patients enrolled in the program and 210 consented to participate in the research study. The mean age of participants was 55 years. Participants were mostly female (78%), white/Caucasian (55%) and half had breast cancer (50%). Participants experienced statistical and clinically meaninful improvements from T0 to T1 in disability, 6MWT, grip strength, physical activity, and several cancer-related symptoms. These outcomes were maintained 3 months after program completion (T2). Qualitative interviews supported these findings and three themes emerged from the interviews: (1) empowerment and control, (2) supervision and internal program support, and (3) external program support. CONCLUSIONS: This study demonstrates the impact of overcoming common organizational barriers to deliver exercise and rehabilitation as part of routine care. CaRE@ELLICSR demonstrated clinically meaningful improvements in patient-reported and functional outcomes and was considered beneficial and important by participants for their recovery and wellbeing.

In-hospital end-of-life care: an appreciative analysis of bereaved family feedback.

Experience feedback data is increasingly recognised as being helpful in improving healthcare services, and in meeting patient and family needs. This end-of-life care project, based on the principles of appreciative inquiry, sought to learn from the experiences of bereaved people whose relative had died in an acute hospital setting. Informal feedback, offered during a routine telephone call, was thematically analysed and interpreted in an appreciative manner. Confirmatory representations of caring practices and behaviours were identified, categorised and disseminated in a way that enabled staff to come to know and understand end-of-life care at its best, rather than as a set of problematised events. The findings served as a benchmark for individuals and teams to assess and progress their practice reflectively. The authors conclude that staff receptiveness to informal bereaved family feedback may be enhanced by focusing on the positive qualities of end-of-life care within existing practices.

Mobile health technologies to improve walking distance in people with intermittent claudication.

BACKGROUND: Peripheral arterial disease (PAD) is the obstruction or narrowing of the large arteries of the lower limbs, which can result in impaired oxygen supply to the muscle and other tissues during exercise, or even at rest in more severe cases. PAD is classified into five categories (Fontaine classification). It may be asymptomatic or various levels of claudication pain may be present; at a later stage, there may be ulceration or gangrene of the limb, with amputation occasionally being required. About 20% of people with PAD suffer from intermittent claudication (IC), which is muscular discomfort in the lower extremities induced by exertion and relieved by rest within 10 minutes; IC causes restriction of movement in daily life. Treatment for people with IC involves addressing lifestyle risk factors. Exercise is an important part of treatment, but supervised exercise programmes for individuals with IC have low engagement levels and high attrition rates. The use of mobile technologies has been suggested as a new way to engage people with IC in walking exercise interventions. The novelty of the intervention, low cost for the user, automation, and ease of access are some of the advantages mobile health (mhealth) technologies provide that give them the potential to be effective in boosting physical activity in adults. OBJECTIVES: To assess the benefits and harms of mobile health (mhealth) technologies to improve walking distance in people with intermittent claudication. SEARCH METHODS: The Cochrane Vascular Information Specialist conducted systematic searches of the Cochrane Vascular Specialised Register, the Cochrane Central Register of Controlled Trials (CENTRAL), MEDLINE, Embase, and CINAHL, and also searched the World Health Organization International Clinical Trials Registry Platform (WHO ICTRP) and ClinicalTrials.gov. The most recent searches were carried out on 19 December 2022. SELECTION CRITERIA: We included randomised controlled trials (RCTs) in people aged 18 years or over with symptomatic PAD and a clinical diagnosis of IC. We included RCTs comparing mhealth interventions to improve walking distance versus usual care (no intervention or non-exercise advice), exercise advice, or supervised exercise programmes. We excluded people with chronic limb-threatening ischaemia (Fontaine III and IV). DATA COLLECTION AND ANALYSIS: We used standard Cochrane methods. Our primary outcomes were change in absolute walking distance from baseline, change in claudication distance from baseline, amputation-free survival, revascularisation-free survival. Our secondary outcomes were major adverse cardiovascular events, major adverse limb events, above-ankle amputation, quality of life, and adverse events. We used GRADE to assess the certainty of the evidence. MAIN RESULTS: We included four RCTs involving a total of 614 participants with a clinical diagnosis of IC. The duration of intervention of the four included RCTs ranged from 3 to 12 months. Participants were randomised to either mhealth or control (usual care or supervised exercise programme). All four studies had an unclear or high risk of bias in one or several domains. The most prevalent risk of bias was in the area of performance bias, which was rated high risk as it is not possible to blind participants and personnel in this type of trial. Based on GRADE criteria, we downgraded the certainty of the evidence to low, due to concerns about risk of bias, imprecision, and clinical inconsistency. Comparing mhealth with usual care, there was no clear evidence of an effect on absolute walking distance (mean difference 9.99 metres, 95% confidence interval (CI) -27.96 to 47.93; 2 studies, 503 participants; low-certainty evidence). None of the included studies reported on change in claudication walking distance, amputation-free survival, or revascularisation-free survival. Only one study reported on major adverse cardiovascular events (MACE) and found no clear difference between groups (risk ratio 1.37, 95% CI 0.07 to 28.17; 1 study, 305 participants; low-certainty evidence). None of the included studies reported on major adverse limb events (MALE) or above-ankle amputations. AUTHORS' CONCLUSIONS: Mobile health technologies can be used to provide lifestyle interventions for people with chronic conditions, such as IC. We identified a limited number of studies that met our inclusion criteria. We found no clear difference between mhealth and usual care in improving absolute walking distance in people with IC; however, we judged the evidence to be low certainty. Larger, well-designed RCTs are needed to provide adequate statistical power to reliably evaluate the effects of mhealth technologies on walking distance in people with IC.

Variation in the Care of Children with Inflammatory Bowel Disease Within and Across Canadian Provinces: A Multi-Province Population-Based Cohort Study.

Purpose: The incidence of childhood-onset inflammatory bowel disease (IBD) is rising. We described variation in health services utilization and need for surgery among children with IBD between six and 60 months following IBD diagnosis across Canadian pediatric centers and evaluated the associations between care provided at diagnosis at each center and the variation in these outcomes. Patients and Methods: Using population-based deterministically-linked health administrative data from four Canadian provinces (Alberta, Manitoba, Nova Scotia, Ontario) we identified children diagnosed with IBD <16 years of age using validated algorithms. Children were assigned to a pediatric center of care using a hierarchical approach based on where they received their initial care. Outcomes included IBD-related hospitalizations, emergency department (ED) visits, and IBD-related abdominal surgery occurring between 6 and sixty months after diagnosis. Mixed-effects meta-analysis was used to pool results and examine the association between center-level care provision and outcomes. Results: We identified 3784 incident cases of pediatric IBD, of whom 2937 (77.6%) were treated at pediatric centers. Almost a third (31.4%) of children had ≥1 IBD-related hospitalization and there were 0.66 hospitalizations per person during follow-up. More than half (55.8%) of children had ≥1 ED visit and there were 1.64 ED visits per person. Between-center heterogeneity was high for both outcomes; centers where more children visited the ED at diagnosis had more IBD-related hospitalizations and more ED visits during follow-up. Between-center heterogeneity was high for intestinal resection in Crohn's disease but not colectomy in ulcerative colitis. Conclusion: There is variation in health services utilization among children with IBD and risk of undergoing intestinal resection in those with Crohn's disease, but not colectomy among children with ulcerative colitis, across Canadian pediatric tertiary-care centers. Improvements in clinical care pathways are needed to ensure all children have equitable and timely access to high quality care.

Forecasting the Incidence and Prevalence of Inflammatory Bowel Disease: A Canadian Nationwide Analysis.

INTRODUCTION: Canada has a high burden of inflammatory bowel disease (IBD). Historical trends of IBD incidence and prevalence were analyzed to forecast the Canadian burden over the next decade. METHODS: Population-based surveillance cohorts in 8 provinces derived from health administrative data assessed the national incidence (2007-2014) and prevalence (2002-2014) of IBD. Autoregressive integrated moving average models were used to forecast incidence and prevalence, stratified by age, with 95% prediction intervals (PI), to 2035. The average annual percentage change (AAPC) with 95% confidence interval (CI) was calculated for the forecasted incidence and prevalence. RESULTS: The national incidence of IBD is estimated to be 29.9 per 100,000 (95% PI 28.3-31.5) in 2023. With a stable AAPC of 0.36% (95% CI -0.05 to 0.72), the incidence of IBD is forecasted to be 31.2 per 100,000 (95% PI 28.1-34.3) in 2035. The incidence in pediatric patients (younger than 18 years) is increasing (AAPC 1.27%; 95% CI 0.82-1.67), but it is stable in adults (AAPC 0.26%; 95% CI -0.42 to 0.82). The prevalence of IBD in Canada was 843 per 100,000 (95% PI 716-735) in 2023 and is expected to steadily climb (AAPC 2.43%; 95% CI 2.32-2.54) to 1,098 per 100,000 (95% PI 1,068-1,127) by 2035. The highest prevalence is in seniors with IBD (1,174 per 100,000 in 2023; AAPC 2.78%; 95% CI 2.75-2.81). DISCUSSION: Over the next decade, the Canadian health care systems will contend with the juxtaposition of rising incidence of pediatric IBD and a rising prevalence of overall IBD driven by the aging population.

Pilot Study on the Efficacy and Safety of Long-Term Oral Imepitoin Treatment for Control of (Thunder)Storm-Associated Noise Phobia/Noise Aversion in Dogs Using an Individualized-Dose Titration Approach.

Imepitoin is a low-affinity partial agonist for benzodiazepine binding sites of gamma-aminobutyric acid receptors with anxiolytic effects. It has been shown to reduce anxiety during noise-related events in dogs when given at 30 mg/kg PO BID, although this dose was associated with ataxia and increased appetite in some cases. The objective of this study was to assess its safety and efficacy for storm anxiety when started at 10 mg/kg PO BID and titrated to effect up to 30 mg/kg PO BID during storm season. Significant decreases in anxiety scores were seen in weekly surveys and storm logs (SLs) at 10, 20 and 30 mg/kg PO BID. Serious adverse events (AEs) were not reported in any subject. Ataxia was the most commonly reported non-serious AE (14/33), followed by increased hunger (13/33). The frequency of AEs was higher in the 20 mg/kg PO BID group than in the 10 mg/kg group PO BID. No clinically significant changes were seen in lab work pre- and post-study. In conclusion, Imepitoin given during storm season at doses ranging from 10 to 30 mg/kg PO BID reduced clinical signs of fear and anxiety during storms for the dogs in this study. These findings support the use of an individually titrated dose.

Factors affecting overall care experience for people living with rare conditions in the UK: exploratory analysis of a quantitative patient experience survey.

BACKGROUND: Although individually rare, collectively, rare conditions are common and affect a large number of people and are often chronic, life threatening and affect multiple body systems; the majority of them have no effective treatment. The literature has identified many specific challenges for those living with rare conditions, however, we do not know which of these in combination are most likely to impact how someone rates their overall experience of care. The aim of this study is to do further exploratory analysis of the Genetic Alliance UK 2020 Rare Experience survey data to identify which variables are most strongly associated with respondents' overall care experience. RESULTS: There were strong associations between most of the selected survey variables and the overall rated experience of care variable. In the multiple linear regression only nine variables remained in the best fit model: 'Trust and confidence in hospital staff involved in ongoing care'; 'Satisfaction with information provided by healthcare professionals-following diagnosis'; 'The professionals providing care work as a team'; 'Feel care is coordinated effectively'; 'The timing and frequency of appointments are convenient for the patient/carer/family'; 'Whether or not there is a specific healthcare professional to ask questions of about the rare/undiagnosed condition'; 'Experience of searching for a diagnosis'; 'Knowledge of whether there is a specialist centre for the condition'; and 'Number of different clinics attend for the condition'. CONCLUSIONS: Our findings indicate the challenges that play the largest part in explaining the varied experiences with rare disease healthcare in the UK for our survey respondents. These challenges should be further investigated with a broader sample of people affected by rare conditions, ideally through the implementation of a comprehensive national rare condition patient registry. Our findings highlight an important potential gap in the Framework, 'trust and confidence in healthcare professionals'; further research is required to fully understand the foundations of trust and confidence.

Health Services Utilization and Specialist Care in Pediatric Inflammatory Bowel Disease: A Multiprovince Population-Based Cohort Study.

BACKGROUND: Patterns of health services utilization among children with inflammatory bowel disease (IBD) are important to understand as the number of children with IBD continues to increase. We compared health services utilization and surgery among children diagnosed <10 years of age (Paris classification: A1a) and between 10 and <16 years of age (A1b). METHODS: Incident cases of IBD diagnosed <16 years of age were identified using validated algorithms from deterministically linked health administrative data in 5 Canadian provinces (Alberta, Manitoba, Nova Scotia, Ontario, Quebec) to conduct a retrospective cohort study. We compared the frequency of IBD-specific outpatient visits, emergency department visits, and hospitalizations across age groups (A1a vs A1b [reference]) using negative binomial regression. The risk of surgery was compared across age groups using Cox proportional hazards models. Models were adjusted for sex, rural/urban residence location, and mean neighborhood income quintile. Province-specific estimates were pooled using random-effects meta-analysis. RESULTS: Among the 1165 (65.7% Crohn's) children with IBD included in our study, there were no age differences in the frequency of hospitalizations (rate ratio [RR], 0.88; 95% confidence interval [CI], 0.74-1.06) or outpatient visits (RR, 0.95; 95% CI, 0.78-1.16). A1a children had fewer emergency department visits (RR, 0.70; 95% CI, 0.50-0.97) and were less likely to require a Crohn's-related surgery (hazard ratio, 0.49; 95% CI, 0.26-0.92). The risk of colectomy was similar among children with ulcerative colitis in both age groups (hazard ratio, 0.71; 95% CI, 0.49-1.01). CONCLUSIONS: Patterns of health services utilization are generally similar when comparing children diagnosed across age groups.

Among 1165 children with inflammatory bowel disease, health services utilization was similar for children diagnosed <10 years of age and those diagnosed ≥10 years of age, except younger children had fewer emergency department visits and Crohn's disease­related surgeries.

A pre-implementation examination of barriers and facilitators of an electronic prospective surveillance model for cancer rehabilitation: a qualitative study.

BACKGROUND: An electronic Prospective Surveillance Model (ePSM) uses patient-reported outcomes to monitor symptoms along the cancer pathway for timely identification and treatment. Randomized controlled trials show that ePSMs can effectively manage treatment-related adverse effects. However, an understanding of optimal approaches for implementing these systems into routine cancer care is limited. This study aimed to identify barriers and facilitators prior to the implementation of an ePSM to inform the selection of implementation strategies. METHODS: A qualitative study using virtual focus groups and individual interviews was conducted with cancer survivors, oncology healthcare providers, and clinic leadership across four cancer centres in Canada. The Consolidated Framework for Implementation Research (CFIR) guided the interviews and analysis of barriers and facilitators based on five domains (intervention characteristics, individual characteristics, inner setting, outer setting, and process). RESULTS: We conducted 13 focus groups and nine individual interviews with 13 patient participants and 56 clinic staff. Of the 39 CFIR constructs, 18 were identified as relevant determinants to the implementation. The adaptability, relative advantage, and complexity of an ePSM emerged as key intervention-level factors that could influence implementation. Knowledge of the system was important at the individual level. Within the inner setting, major determinants were the potential fit of an ePSM with clinical workflows (compatibility) and the resources that could be dedicated to the implementation effort (readiness for implementation). In the outer setting, meeting the needs of patients and the availability of rehabilitation supports were key determinants. Engaging various stakeholders was critical at the process level. CONCLUSIONS: Improving the implementation of ePSMs in routine cancer care has the potential to facilitate early identification and management of treatment-related adverse effects, thereby improving quality of life. This study provides insight into important factors that may influence the implementation of an ePSM, which can be used to select appropriate implementation strategies to address these factors.

Efficacy of the Rehabilitation Planning Consult for Survivors of Head and Neck Cancer: A Phase 2 Randomized Controlled Trial.

PURPOSE: Survivors of head and neck cancer may have significant lasting impairments and poor access to rehabilitation. To address this, our group developed and evaluated a rehabilitation planning consult (RPC). The RPC is conducted through an initial consultation and a single follow-up session with a rehabilitation professional. During the initial consultation, rehabilitation needs are determined and the survivor sets individualized goals and plans. They then implement their plans independently and are facilitated to evaluate and modify plans as necessary during the follow-up session. METHODS AND MATERIALS: We used a waitlist control design to compare the proportion of participants attaining a minimally importantly different change in quality of life (QOL) on the Short Form 36 Physical Health Summary Score from baseline to 3 months after study enrollment, between patients randomized to receive (n = 77) or wait 14 ± 3 weeks to receive (n = 76) the RPC. Additional outcomes included goal attainment indicators measured using the Brief Rehabilitation Assessment for Survivors of Head and Neck Cancer (BRASH). RESULTS: Of 153 participants recruited, 95 (62%) completed the intervention; 57 were in the immediate (RPC) group and 38 were in the waiting list control (WLC) group. No significant between-group differences were seen in the proportion of patients achieving a minimally important improvement (2.5 units) on the Physical Health Summary Score from baseline to 3 months after recruitment. No between-group differences were seen on any secondary QOL indicators. Among the 67 (RPC n = 42, WLC n = 22) participants who set individualized rehabilitation goals, BRASH scores on goal performance and satisfaction with goal performance were significantly better in the RPC group. CONCLUSIONS: Our results suggest that the RPC may provide benefit in patients' individualized domains of choice among those who set goals, without affecting overall QOL. Future work could refine the subset of patients who benefit and explore the optimal timing and intensity of the intervention.

Reproductive Fate of Brucellosis-Seropositive Elk (Cervus canadensis): Implications for Disease Transmission Risk.

Brucellosis is a disease caused by the bacterium Brucella abortus that infects elk (Cervus canadensis) and cattle (Bos taurus). There is the potential for transmission from wildlife to livestock through contact with infected material shed during abortions or live births. To understand the impact of exposure on pregnancy rates we captured 30-100 elk per year from 2011 through 2020, testing their blood for serologic exposure to B. abortus. Predicted pregnancy rates for seropositive animals were 9.6% lower in prime-age (2.5-15.5 yr; 85%, 95% confidence interval [CI]: 74-91%) and 37.7% lower in old (>15.5 yr; 43%, 95% CI: 19-71%) elk as compared with seronegative animals. To understand the risk of seropositive elk shedding B. abortus bacteria and the effects of exposure on elk reproductive performance, we conducted a 5-yr longitudinal study monitoring 30 seropositive elk. We estimated the annual probability of a seropositive elk having an abortion as 0.06 (95% CI: 0.02-0.15). We detected B. abortus at three abortions and two live births, using a combination of culture and PCR testing. The predicted probability of a pregnant seropositive elk shedding B. abortus during an abortion or live birth was 0.08 (95% CI: 0.04-0.19). To understand what proportion of seropositive elk harbored live B. abortus bacteria in their tissues, we euthanized seropositive elk at the end of 5 yr of monitoring and sampled tissues for B. abortus. Assuming perfect detection, the predicted probability of a seropositive elk having B. abortus in at least one tissue was 0.18 (95% CI: 0.06-0.43). The transmission risk seropositive elk pose is mitigated by decreased pregnancy rates, low probability of abortion events, low probability of shedding at live birth events, and reasonably low probability of B. abortus in tissues.

Ketamine for Pain in Sickle Cell Disease Reduces Opioid Usage.

CONTEXT: Pain attributable to sickle cell disease (SCD) is often unpredictable, recurrent, and requires complex treatments. Subanesthetic ketamine infusion has been studied in other diseases and disorders, but there is still limited data on its efficacy in pain management for SCD. OBJECTIVES: The primary objective is to determine if subanesthetic ketamine infusion reduces pain scores and opioid requirements in hospitalized pediatric patients with SCD. RESULTS: Forty-six admissions among 22 patients between February 2018 and December 2019 were analyzed. We observed decrease in pain scores within 24 hours of ketamine initiation in 34 of 46 admissions (mean pain score per patient before ketamine initiation: 2.2-9.7, mean pain score per patient after ketamine initiation: 0-9.7; P < .05). We observed a decrease in pain scores in the remaining 12 admissions after greater than 24 hours of ketamine initiation. Opioid usage declined after ketamine infusion, with a difference of means in oral morphine equivalents before and after ketamine of 122.8 mg/day. The side effects observed with ketamine infusion included hallucinations in 11 (23.9%) admissions. Only four (8.7%) admissions required cessation of the infusion due to side effects. The readmission rate at two weeks and four weeks after first ketamine infusion was the same (12.5%) at both time points. For all patients in the cohort, the introduction of ketamine into pain regimens did not reduce the number of admissions in the year following ketamine initiation relative to the year prior. CONCLUSION: In pediatric patients with SCD, subanesthetic ketamine was safe as a continuous infusion and effectively reduced both pain scores and opioid requirements.