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Introduction: Inflammatory bowel disease (IBD) is a chronic inflammatory condition of the gastrointestinal tract with no known cure. Management of IBD is complex and requires those with IBD to have lifelong interactions with the healthcare system. Individuals with IBD who live in rural areas are at risk of poorer health outcomes due to their limited access to care. This study examined healthcare utilization and access to care for rural adults with IBD. The research questions explored in this study were: What are the care experiences of healthcare providers (HCPs) and persons living with IBD in rural areas? What are the enablers and barriers to optimal IBD care in rural environments? What strategies are necessary to enhance care delivery for these individuals with IBD? Methods: This patient-oriented research initiative involved patient and family advisors as active and equal team members in decision-making throughout the project. This article reports on the qualitative findings of a larger mixed-methods study. The setting was one western Canadian province. Fourteen individuals with IBD living in rural areas and three HCPs working in rural areas participated. Interview data were analyzed using thematic analysis. Results: Three themes were identified: communication, stressors and support systems, and coordination of care. Communication with and between HCPs was challenging due to the distance to access care. Participants described challenges related to rural HCPs' lack of IBD-related knowledge. Virtual communication, such as telehealth and phone clinics, was infrequently used yet highly recommended by participants. Individuals with IBD described various stressors and feelings of isolation while living in rural environments, and both participant groups described the need for additional formal and informal support systems to ease these stressors. Coordination of care was considered essential to optimal health outcomes, but individuals frequently experienced gaps in care. Lack of local services such as outpatient clinics, hospitals, laboratory testing, infusion clinics, and pharmacies meant individuals with IBD frequently had to travel to access care. Some participants reported bypassing existing local services, instead preferring the expedited, specialist care within larger centers. Conclusion: Most participants described challenges associated with living in rural areas and suggested health system improvements. Access to multidisciplinary care teams, including IBD physicians and nurses, psychologists, and dieticians, for individuals in rural areas is encouraged, as is the use of virtual care delivery options such as telehealth, online clinics, telephone clinics or advice lines, web-based video-conferencing, and email communication to increase access to care. Continued efforts to recruit and retain rural HCPs with knowledge of IBD are deemed necessary to provide continuity of care within rural environments. Strengthening formal and informal support systems and enhancing psychosocial supports in rural communities are warranted to ensure optimal wellbeing. Online strategies to provide individual and group education related to IBD are strongly recommended. Facilitating access to care in rural areas can increase disease remission, decrease direct and indirect care costs, and promote quality of life in individuals with IBD.

Background: In 2019, cancer patients comprised over 65% of all individuals who requested and received Medical Assistance in Dying (MAID) in Canada. This descriptive study sought to understand the self-reported symptom burden and complexity of cancer patients in the 12 months prior to receiving MAID in Alberta. Methods: Between July 2017 and January 2019, 337 cancer patients received MAID in Alberta. Patient characteristics were descriptively analyzed. As such, 193 patients (57.3%) completed at least one routine symptom-reporting questionnaire in their last year of life. Mixed effects models and generalized estimating equations were utilized to examine the trajectories of individual symptoms and overall symptom complexity within the cohort over this time. Results: The results revealed that all nine self-reported symptoms, and the overall symptom complexity of the cohort, increased as patients’ MAID provision date approached, particularly in the last 3 months of life. While less than 20% of patients experienced high symptom complexity 12 months prior to MAID, this increased to 60% in the month of MAID provision. Conclusions: Cancer patients in this cohort experienced increased symptom burden and complexity leading up to their death. These findings could serve as a flag to clinicians to closely monitor advanced cancer patients’ symptoms, and provide appropriate support and interventions as needed.

Background: Childhood cancer survivors are at increased risk of therapy-related premature menopause (PM), with a cumulative incidence of 8.0%, but the contribution of genetic factors is unknown.Methods: Genome-wide association analyses were conducted to identify single nucleotide polymorphisms (SNPs) associated with clinically diagnosed PM (menopause < 40 years) among 799 female survivors of childhood cancer participating in the St. Jude Lifetime Cohort Study (SJLIFE). Analyses were adjusted for cyclophosphamide equivalent dose of alkylating agents and ovarian radiotherapy (RT) dose (all P values two-sided). Replication was performed using self-reported PM in 1624 survivors participating in the Childhood Cancer Survivor Study (CCSS).Results: PM was clinically diagnosed in 30 (3.8%) SJLIFE participants. Thirteen SNPs (70 kb region of chromosome 4q32.1) upstream of the Neuropeptide Receptor 2 gene (NPY2R) were associated with PM prevalence (minimum P = 3.3 × 10-7 for rs9999820, all P < 10-5). Being a homozygous carrier of a haplotype formed by four of the 13 SNPs (seen in one in seven in the general population but more than 50% of SJLIFE clinically diagnosed PM) was associated with markedly elevated PM prevalence among survivors exposed to ovarian RT (odds ratio [OR] = 25.89, 95% confidence interval [CI] = 6.18 to 138.31, P = 8.2 × 10-6); this finding was replicated in an independent second cohort of CCSS in spite of its use of self-reported PM (OR = 3.97, 95% CI = 1.67 to 9.41, P = .002). Evidence from bioinformatics data suggests that the haplotype alters the regulation of NPY2R transcription, possibly affecting PM risk through neuroendocrine pathways.Conclusions: The haplotype captures the majority of clinically diagnosed PM cases and, with further validation, may have clinical application in identifying the highest-risk survivors for PM for possible intervention by cryopreservation. [ABSTRACT FROM AUTHOR]

Background Efficient and reliable surveillance and notification systems are vital for monitoring public health and disease outbreaks. However, most surveillance and notification systems are affected by a degree of underestimation (UE) and therefore uncertainty surrounds the 'true' incidence of disease affecting morbidity and mortality rates. Surveillance systems fail to capture cases at two distinct levels of the surveillance pyramid: from the community since not all cases seek healthcare (under-ascertainment), and at the healthcare-level, representing a failure to adequately report symptomatic cases that have sought medical advice (underreporting). There are several methods to estimate the extent of under-ascertainment and underreporting. Methods Within the context of the ECDC-funded Burden of Communicable Diseases in Europe (BCoDE)-project, an extensive literature review was conducted to identify studies that estimate ascertainment or reporting rates for salmonellosis and campylobacteriosis in European Union Member States (MS) plus European Free Trade Area (EFTA) countries Iceland, Norway and Switzerland and four other OECD countries (USA, Canada, Australia and Japan). Multiplication factors (MFs), a measure of the magnitude of underestimation, were taken directly from the literature or derived (where the proportion of underestimated, under-ascertained, or underreported cases was known) and compared for the two pathogens. Results MFs varied between and within diseases and countries, representing a need to carefully select the most appropriate MFs and methods for calculating them. The most appropriate MFs are often disease-, country-, age-, and sex-specific. Conclusions When routine data are used to make decisions on resource allocation or to estimate epidemiological parameters in populations, it becomes important to understand when, where and to what extent these data represent the true picture of disease, and in some instances (such as priority setting) it is necessary to adjust for underestimation. MFs can be used to adjust notification and surveillance data to provide more realistic estimates of incidence. [ABSTRACT FROM AUTHOR]

Background The recent outbreak of Q fever in the Netherlands between 2007 and 2009 is the largest recorded Q fever outbreak. Exposure to Coxiella burnetii may cause Q fever but the size of the population exposed during the outbreak remained uncertain as little is known of the infectivity of this pathogen. The quantification of the infectiousness and the corresponding response is necessary for assessing the risk to the population. Methods A human challenge study was published in the 1950s but this study quantified the dose of C. burnetii in relative units. Data from a concurrent guinea pig challenge study were combined with a recent study in which guinea pigs were challenged with a similar aerosol route to quantify human exposure. Concentration estimates for C. burnetii are made jointly with estimates of the dose response parameters in a hierarchical Bayesian framework. Results The dose for 50% infection (InfD50%) in human subjects is 1.18 bacteria (95% credible interval (CI) 0.76-40.2). The dose for 50% illness (IllD50) in challenged humans is 5.58 (95%CI 0.89-89.0) bacteria. The probability of a single viable C. burnetii causing infection in humans is 0.44 (95%CI 0.044-0.59) and for illness 0.12 (95%CI 0.0006-0.55). Conclusions To our knowledge this is the first human dose-response model for C. burnetii. The estimated dose response relation demonstrates high infectivity in humans. In many published papers the proportion of infected individuals developing illness is reported to be 40%. Our model shows that the proportion of symptomatic infections may vary with the exposure dose. This implies that presence of these bacteria in the environment, even in small numbers, poses a serious health risk to the population. [ABSTRACT FROM AUTHOR]

Introduction Therapy-related myelodysplastic syndrome and acute myeloid leukemia (t-MDS/AML) are rare but well-recognized complications of cancer therapy. Allogeneic hematopoietic cell transplantation (HCT) with myeloablative conditioning (MAC) remains the mainstay of treatment but is associated with a high incidence of non-relapse mortality (NRM). Reduced intensity conditioning (RIC) may reduce NRM in these heavily pre-treated patients. The primary objective of this study was to compare outcomes following RIC and MAC regimens in patients receiving an allogeneic HCT. Methods Retrospective chart review of patients <21 years of age who underwent HCT for t-MDS/AML from 1995-2017 at 16 centers in the United States and Mexico. Patient, disease, and HCT-related variables were described. We compared outcomes between MAC and RIC regimens. Probabilities of overall survival (OS), event free survival (EFS) were calculated using the Kaplan Meier estimator (log-rank) and Cox proportional-hazards model for multivariate analysis. Results One hundred and forty-seven patients were included with 29 (19.7%) receiving RIC and 115 (78.2%) MAC (Table 1). The median follow-up of entire cohort was 13.4 (0-246) months. OS and EFS of the entire cohort was 44.7% (95% CI: 37.1-53.9) and 40.2% (95% CI: 32.8-49.3) at 3 years, respectively, and there was no significant difference between MAC and RIC cohorts (Fig A & B). Karnofsky performance status of the patients (>=90) was the only factor that was found to be statistically associated with improved EFS (HR 0.49, p=0.01). NRM was noted in 61% of patients after MAC compared to 28% after RIC, however disease relapse was a major cause of death after RIC (Fig C & D). The majority of transplants were performed after 2005 (81.6%) and outcomes seem to be slightly better in contemporary era due to improved supportive care and decreased NRM. Conclusion This is one of the largest reported cohorts of pediatric patients receiving allogeneic transplantation for t-MDS/AML. Outcomes are poor relative to de novo MDS/AML due to high rate of NRM with MAC and high rate of disease related death after RIC. Novel strategies that lead to a reduction in transplant-related mortality in these heavily pre-treated patients while providing sufficient disease control are needed to improve survival in t-MDS/AML patients receiving HCT. [ABSTRACT FROM AUTHOR]

Survivors of childhood cancer (SCCs) are at increased risk of late effects, which are cancer- and treatment-related side-effects that are experienced months to years post-treatment and encapsulate a range of physical, cognitive and emotional problems including secondary malignancies. Perceived health can serve as an indicator of overall health. This study aims to (1) understand how a patient reported outcome (PRO) of perceived health of SCCs compares to controls who have not had a cancer diagnosis and (2) examine the relationships between perceived health and demographic and clinical variables, and health behavior. A total of 209 SCCs (n = 113 (54.10%) males; median age at diagnosis = 6.50 years; median time off treatment = 11.10 years; mean age at study = 19.00 years) were included. SCCs completed annual assessments as part of Long-Term Survivor Clinic appointments, including a question on perceived health answered on a five-point Likert scale. Data were collected retrospectively from medical charts. Perceived health of SCCs was compared to a control group (n = 836) using data from the 2014 Canadian Community Health Survey. Most SCCs (67%) reported excellent or very good health. The mean perceived health of SCCs (2.15 ± 0.91) was not statistically different from population controls (2.10 ± 0.87). Pain (B = 0.35; p < 0.001), physical activity (B = −0.39; p = 0.013) and concerns related to health resources (B = 0.59; p = 0.002) were significant predictors of perceived health. Factors shown to influence SCCs’ perceived health may inform interventions. Exploration into how SCCs develop their conception of health may be warranted.