Provincial Program Research Articles

Variability in newborn screening across Canada: spinal muscular atrophy and beyond (P4-9.002)

<h3>Objective:</h3> To determine whether important differences exist in newborn screening (NBS) programs across Canadian provinces and territories. Given that spinal muscular atrophy (SMA) is the most recent disease added to NBS programs, we hypothesized that its inclusion would show interprovincial variability and be more likely in provinces already screening for a greater number of diseases. <h3>Background:</h3> NBS identifies infants with severe or potentially fatal diseases, enabling early diagnosis and treatment. In Canada, decisions regarding disease inclusion in NBS programs occur at the provincial level, which may lead to variability and inequity of patient screening and care. <h3>Design/Methods:</h3> We conducted a cross-sectional survey of all NBS labs in Canada to understand: 1) what conditions were currently included in their program; 2) what genetic-based testing was performed and; 3) if SMA was included. <h3>Results:</h3> All NBS programs (N=8) responded to this survey by June 2022. There was a 2.5-fold difference (N=14 vs N=36) in the total number of conditions screened between provinces, and a 9-fold difference (N=1 vs N=9) in the number of conditions screened by gene-based testing. Only nine conditions were common to all provincial NBS programs. NBS for SMA is currently only performed in four provinces which are also the four provinces with the largest number of conditions in their NBS programs. Currently, 60% of Canadian newborns are screened for SMA at birth (relative to 98% of American newborns) and benefit from early or pre-symptomatic diagnosis and treatment initiation. <h3>Conclusions:</h3> Although healthcare in Canada is universal, its decentralization gives rise to important regional differences. Variability in provincial NBS programs creates inequity in age of diagnosis and initiation of disease-modifying treatments, which can affect potential long-term neurodevelopmental outcomes of affected children. Canadian provinces must work to standardize NBS panels across the country. <b>Disclosure:</b> The institution of Miss Groulx-Boivin has received research support from Muscular Dystrophy Canada. Dr. Osman has nothing to disclose. Pranesh Chakraborty has nothing to disclose. Ms. Lintern has nothing to disclose. Dr. Oskoui has received personal compensation in the range of $500-$4,999 for serving as an officer or member of the Board of Directors for the Association des Neurologues du Quebec. The institution of Dr. Oskoui has received research support from Biogen. The institution of Dr. Oskoui has received research support from Roche Genetech. The institution of Dr. Oskoui has received research support from Muscular Dystrophy Canada. The institution of Dr. Oskoui has received research support from Canadian Institutes of Health Research. Dr. Oskoui has received personal compensation in the range of $50,000-$99,999 for serving as a Methodologist with American Academy of Neurology. Dr. Oskoui has a non-compensated relationship as a Member of the Medical and Scientific Advisory Committee with Muscular Dystrophy Canada that is relevant to AAN interests or activities. The institution of Dr. Selby has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Roche. The institution of Dr. Selby has received research support from Biogen . The institution of Dr. Selby has received research support from Italfarmico. The institution of Dr. Selby has received research support from Reverogen. The institution of Dr. Van Caeseele has received research support from Muscular Dystrophy Canada. Ms. Wyatt has nothing to disclose. Dr. McMillan has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Novartis Gene Therapies. Dr. McMillan has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Novartis Gene Therapies. The institution of Dr. McMillan has received research support from Roche.

Homeowner perspectives on the implementation of the Community Homes for Opportunity (CHO) program: an ethnographic group homes study in Southwestern Ontario Canada

BackgroundThe global extant literature acknowledge that housing serves as a key social determinant of health. Housing interventions that involve group homes have been found to support the recovery of persons with mental illness and those with addiction issues. The current study explored the views of homeowners in relation to a supportive housing program called Community Homes for Opportunity (CHO) that modernised a provincial group home program (Homes for Special Care [HSC]) and provided recommendations for improving the program implementation in other geographical areas of Ontario.MethodsWe applied ethnographic qualitative techniques to purposefully recruit 36 homeowner participants from 28 group homes in Southwest Ontario, Ontario Canada. Focus group discussions were conducted at two time points, during CHO program implementation (Fall 2018, and post implementation phases (Winter 2019) respectively.ResultsData analysis yielded 5 major themes. These include: (1) general impressions about the modernization process, (2) perceived social, economic and health outcomes, (3) enablers of the modernization program, (4) challenges to implementation of the modernization program, and (5) suggestions for implementation of the CHO in future.ConclusionsA more effective and expanded CHO program will need the effective collaboration of all stakeholders including homeowners for successful implementation.

Variability in Newborn Screening Across Canada: Spinal Muscular Atrophy and Beyond.

Newborn screening (NBS) identifies infants with severe, early-onset diseases, enabling early diagnosis and treatment. In Canada, decisions regarding disease inclusion in NBS programs occur at the provincial level, which leads to variability in patient care. We aimed to determine whether important differences exist in NBS programs across provinces and territories. Given that spinal muscular atrophy (SMA) is the most recent disease added to NBS programs, we hypothesized that its inclusion would show interprovincial variability and be more likely in provinces already screening for a greater number of diseases. We conducted a cross-sectional survey of all NBS labs in Canada to understand: 1) what conditions were included in their program; 2) what genetic-based testing was performed and; 3) if SMA was included. All NBS programs (N = 8) responded to this survey by June 2022. There was a 2.5-fold difference in the number of conditions screened (N = 14 vs N = 36) and a 9-fold difference in the number of conditions screened by gene-based testing. Only nine conditions were common to all provincial NBS programs. NBS for SMA was performed in four provinces at the time of our survey, with BC recently becoming the fifth province to add SMA to their NBS on October 1, 2022. Currently, 72% of Canadian newborns are screened for SMA at birth. Although healthcare in Canada is universal, its decentralization gives rise to regional differences in NBS programs which creates inequity in the treatment, care, and potential outcomesof affected children across provincial jurisdictions.

A157 FIT-POSITIVE COLONOSCOPY FINDINGS IN NOVA SCOTIA STRATIFIED BY SEX, RACE, AND REGIONAL POPULATION DENSITY

Abstract Background Population-based colorectal cancer (CRC) screening programs aim to minimize disparities in CRC rates through universal access. However, Canadian CRC mortality rates remain inversely associated with socioeconomic status and rural residence. In the United States some racialized groups have higher rates of advanced adenomas and CRC. Little is known about pre-cancerous findings or CRC mortality amongst racialized groups in Canada because race and ethnicity data are not routinely collected. Purpose To determine whether FIT-positive colonoscopy incident adenomas and CRC differ on the basis of sex, race, and regional population density in a provincial CRC screening program. Method In this retrospective cohort study drawn from the Nova Scotia Colon Cancer Prevention Program database, we identified adults who had a positive FIT from 2011 to 2021. This report describes incident adenomas and CRC, stratified by sex, race (white vs. racialized groups), and regional population density (urban vs. rural). Racialized groups included those who self-identified as Black/African Canadian, Asian, Middle Eastern and Indigenous. Urban was defined as population centers with more than 5000 individuals. Colonoscopy findings were categorized as no findings, low-risk adenoma (LRA), high-risk adenoma (HRA), or CRC. Comparison between categorical variables was performed with a chi-square test and a t-test for continuous variables. P-value &amp;lt;0.05 was considered significant. Result(s) 41,209 adults (mean age 63.9) had a positive FIT and 34,636 went on to have a colonoscopy offered by the screening program. The FIT-positive colonoscopy participation rate was 84%. Of the 16% overall with a positive FIT but no screening program colonoscopy, 83% had a program consultation but did not proceed with endoscopy for unspecified reasons, 9% declined, and 8.2% are unknown. The overall rate of CRC was 2.4% (n=825) and the adenoma-detection rate was 60.4% (n=20,932). CRC (mean age 65.4) and HRA (mean age 64.6) were associated with older age (p &amp;lt;0.01). Males were more likely to have HRA (38.4% of males) or LRA (26.6% of males) identified compared to females, and females were more likely to have no colonoscopy findings (47.8% of females). CRC was more likely to be identified in urban (2.8%) than rural sub-populations (2.0%). No difference in adenomas or CRC incident rates were noted between white and racialized sub-groups. Image Conclusion(s) This analysis of a provincial CRC screening program suggests that males and urban sub-populations had more high-risk findings during FIT-positive colonoscopies. In the first reported Canadian data, incident rates of adenomas and CRC were similar in white and racialized sub-groups. Please acknowledge all funding agencies by checking the applicable boxes below None Disclosure of Interest None Declared

Child health nursing in the Solomon Islands: A qualitative evaluation of the impact of the 'Bachelor of nursing - Child health'.

To explore graduates' perceptions of the impact on nursing practice of a new postgraduate course in child health, developed and implemented in the Solomon Islands in 2016. The Bachelor of Nursing -Child Health was implemented in 2016 to develop nurses' knowledge and skills in child health and paediatric care with the intent to improve national child health outcomes. A qualitative exploratory, descriptive design was used to evaluate the impact of the Bachelor of Nursing -Child Health on graduates' nursing practice. Fourteen nurses who graduated from the first cohort of students enrolled in the child health course were purposively selected to participate. Participants engaged in individual semi-structured interviews, conducted between August and December 2018. A thematic analysis was undertaken following Braun and Clarke's six-phase process. Findings from the study demonstrate positive impacts of the course on graduates' nursing practice. These include a perceived enhanced quality of care through their commitment to evidence-based practice, the ability to contribute to capacity building of colleagues, the reinforcement of provincial public health programmes and expanded participation in managerial activities. Following graduation, most alumni took on senior roles and greater responsibilities, felt more confident in managing unwell children, felt there was better access to and quality of child health care at the community and broader country levels and felt recognised by colleagues and communities. Some graduates faced resistance from colleagues to change practice and felt that despite being given greater responsibilities, nursing levels and salaries remained unchanged. This reflected a potential lack of recognition from hospital or provincial managers, the Nursing Council as the regulatory body for the nursing profession, and the Ministry of Health and Medical Services. A lack of human and material resources also impacted quality of care. Findings from this study underline the need for the Solomon Islands National University, the Nursing Council, the Public Service and the Ministry of Health and Medical Services to concord and delineate formal accreditation standards for child health nurses. Overall, collaborative efforts and commitments at local, regional and global levels are required to support child health nurses in their ability and ambition to improve national child health outcomes. Findings from this study demonstrate positive impacts of the course on graduates' nursing practice. The impact of increasing nurses' knowledge and skills on national child health outcomes could be significant. Ongoing implementation and recognition of this course in the Solomon Islands, as well as more broadly across the Pacific region, are recommended.

Exploring the role of a multidisciplinary hereditary gynecologic oncology clinic in epithelial ovarian cancer risk-reducing surgical decision-making practices: A mixed-methods study.

Individuals that have gynecologic reproductive organs with pathogenic variants in BRCA1 or BRCA2 ("BRCA-positive") have an increased risk of developing high-grade serous ovarian cancer (HGSOC). The majority of HGSOC develops in the fallopian tubes and later spreads to the ovaries and peritoneal cavity. Therefore, risk-reducing salpingo-oophorectomy (RRSO) is recommended for those who are BRCA-positive to preventatively remove their ovaries and fallopian tubes. The Hereditary Gynecology Clinic (HGC) is a provincial program in Winnipeg, Canada, that specifically targets care to the unique needs of such individuals through an interdisciplinary team of gynecological oncologists, menopause specialists, and registered nurses. A mixed-methods study design was used to explore the decision-making processes of these BRCA-positive individuals who have been recommended (or who completed) RRSO and experiences with healthcare providers at the HGC influenced this decision. Individuals who are BRCA-positive without a previous diagnosis of HGSOC and who had previously received genetic counselling were recruited from the HGC and the provincial cancer genetics program (Shared Health Program of Genetics & Metabolism). Forty-three people completed a survey and 15 participated in an in-depth interview about their experiences and decisions surrounding RRSO. Surveys were analyzed to compare scores on validated scales related to decision-making and cancer-related worry. Qualitative interviews were transcribed, coded, and analyzed using interpretive description. Participants described the complex decisions faced by those who are BRCA-positive, which are intertwined with life experiences and circumstances including age, marital status, and family disease history. Participants interpreted their HGSOC risk through a personalized "lens" of contextual factors that impacted perceptions about the practical and emotional implications of RRSO and the need for surgery. Mean scores on validated scales evaluating the HGC's impact on decisional outcomes and preparedness for decision-making about RRSO were not significant, indicating that the HGC played a supportive role, rather than helping with decision-making itself. Therefore, we present a novel framework that consolidates the various influences on decision-making and connects them to the psychological and practical implications of RRSO in the context of the HGC. Strategies for improving support, decisional outcomes, and the overall experiences of individuals who are BRCA-positive attending the HGC are also described.

Longitudinal evaluation of plasma miR371 to detect minimal residual disease and early relapse of germ cell tumors.

407 Background: Active surveillance is routinely recommended to manage patients (pts) with clinical stage I (CSI) germ cell testicular tumors (GCT), the most common presentation of newly diagnosed GCT. Circulating plasma miR371a-3p (miR371) has shown high sensitivity and specificity in pts with metastatic non teratoma GCT or in pts with clinically detectable testicular GCT prior to orchiectomy. However, limited data are available about this biomarker accuracy to detect minimal residual disease post-orchiectomy in pts on active surveillance for early stage disease. Methods: CSI GCT pts with available plasma samples after radical orchiectomy enrolled in the British Columbia provincial biobank research program were selected for this study. RT-PCR was used for qualitative miR371 analysis. Sensitivity, specificity, negative and positive predictive values (NPV, PPV) and AUC in predicting tumor recurrence were evaluated for miR371 and compared to the same operating characteristics of current gold standard diagnostic tests. Relapse free survival (RFS) was correlated to post-orchiectomy miR371 (positive or negative) status. Fisher’s exact test was used to evaluate the sensitivity and specificity, unpaired t-test for comparison of miR371 expression. RFS was calculated using the Kaplan-Meier method, and differences between groups were estimated using the log rank test, 2-sided and with 5% significance threshold. Results: With a median follow-up of 41 months, 101 pts with CSI GTCwere included, of whom 35 (34.6%) experienced a disease relapse during the follow-up. miR371 was positive in 22/35 (62.8%) of the relapsed pts. miR371 positivity preceded clinical evident disease by a median of 3 months (range: 1-12 months).The specificity and PPV were 100% (95% CI: 94.5 - 100 for both), sensitivity 62.8% (95% CI: 44.9 - 78.5), NPV 83.5% (95% CI: 76.7 - 88.6) and AUC 0.81 (95% CI: 0.71 - 0.91). No false positive results were observed. The RFS of the pts with positive post-orchiectomy miR371 was significantly shorter (median: 3.5 months vs. not reached; p&lt;0.0001) compared to the pts with a negative post-orchiectomy miR371 (HR: 16.9; 95% CI: 2.1 - 135.7; p&lt;0.0001). miR371 sensitivity correlated with tumor burden, time between tumor relapse and miRNA testing and histology (nonseminoma &gt; seminoma). Conclusions: miR371 has high specificity and PPV in detecting GCT at an early stage and could be used to guide treatment selection after orchiectomy. Further studies, including the SWOG S1823 clinical trial, are ongoing or have been planned in this setting for validation of clinical utility.

Presenting a Framework for Provincial Crisis Response Programs in Hamadan Province

INTRODUCTION: After the approval of the country's crisis management law, the upstream documents related to this law, including the preparedness and response programs at the national and provincial levels, are among the tasks assigned to increase the efficiency of the crisis management processes. METHODS: This study presents a general framework for developing a provincial crisis response program. The proposed process has been used to develop the crisis response program of Hamadan province. In the phase of understanding the current situation, questionnaires and in-depth interviews were used to collect field data and determine the challenges presented to crisis management in Hamadan province. Moreover, a method for allocating the specialized functions of the response phase to the provincial organizations has been presented using the national crisis documents. FINDINGS: In general, the findings of this research can be assigned to three groups. The first group pertained to the project method, including the stages of understanding the current situation and developing the response program of the provinces. The second group of findings was the summary of the analysis of field data collected regarding the state of preparedness and response in Hamadan province. The third group encompassed determining and allocating specialized crisis response functions in Hamadan province. The functions of the provinces (n=32) and after their compliance with the national functions, the crisis management law, and the capabilities of the existing organization in the province, 56 specialized sub-functions were identified in the provinces, and the responsible, collaborating, and supporting institutions were determined. CONCLUSION: As evidenced by the obtained results, in the process of function allocation, some problems have been identified due to the shortage of information in the upstream documents, which are suggested to the crisis management organization for better planning.

Comparing Control Intervention Scenarios for Raccoon Rabies in Southern Ontario between 2015 and 2025.

The largest outbreak of raccoon rabies in Canada was first reported in Hamilton, Ontario, in 2015 following a probable translocation event from the United States. We used a spatially-explicit agent-based model to evaluate the effectiveness of provincial control programs in an urban-centric outbreak if control interventions were used until 2025, 2020, or never used. Calibration tests suggested that a seroprevalence of protective rabies antibodies 2.1 times higher than that inferred from seroprevalence in program assessments was required in simulations to replicate observed raccoon rabies cases. Our simulation results showed that if control interventions with an adjusted seroprevalence were used until 2025 or 2020, the probability of rabies elimination due to control intervention use was 49.2% and 42.1%, respectively. However, if controls were never used, the probability that initial rabies cases failed to establish a sustained outbreak was only 18.2%. In simulations where rabies was not successfully eliminated, using control interventions until 2025 resulted in 67% fewer new infections compared to only applying controls until 2020 and in 90% fewer new infections compared to no control intervention use. However, the model likely underestimated rabies elimination rates since we did not adjust for adaptive control strategies in response to changes in rabies distributions and case numbers, as well as extending control interventions past 2025. Our agent-based model offers a cost-effective strategy to evaluate approaches to rabies control applications.

Portrait of autosomal recessive diseases in the French-Canadian founder population of Saguenay-Lac-Saint-Jean.

The population of the Saguenay-Lac-Saint-Jean (SLSJ) region, located in the province of Quebec, Canada, is recognized as a founder population, where some rare autosomal recessive diseases show a high prevalence. Through the clinical and molecular study of 82 affected individuals from 60 families, this study outlines 12 diseases identified as recurrent in SLSJ. Their carrier frequency was estimated with the contribution of 1059 healthy individuals, increasing the number of autosomal recessive diseases with known carrier frequency in this region from 14 to 25. We review the main clinical and molecular features previously reported for these disorders. Five of the studied diseases have a potential lethal effect and three are associated with intellectual deficiency. Therefore, we believe that the provincial program for carrier screening should be extended to include these eight disorders. The high-carrier frequency, together with the absence of consanguinity in most of these unrelated families, suggest a founder effect and genetic drift for the 12 recurrent variants. We recommend further studies to validate this hypothesis, as well as to extend the present study to other regions in the province of Quebec, since some of these disorders could also be present in other French-Canadian families.

Retrospective Cohort Analysis of Outpatient Antibiotic Use for Clostridioides difficile-Indicated Agents in British Columbia, from 2000 to 2018.

Clostridioides difficile (CDI) is the most common cause of nosocomial diarrheal infections. Historically, metronidazole was the first-line treatment, but guidelines now indicate oral vancomycin and fidaxomicin as primary antibiotics for initial episodes. A provincial stewardship program has operated in British Columbia (BC), since 2005. Since the program's inception, surveillance of antibiotic use has been ongoing. However, this is the first study to review community-acquired CDI-indicated antibiotic use. Moreover, this study offers the first interpretation of fidaxomicin use in BC since its addition to the provincial formulary. A retrospective cohort analysis included all outpatient dispensations for CDI-related antibiotics from January 1, 2000, to December 31, 2018. Antibiotic dispensations were extracted for metronidazole, vancomycin, and fidaxomicin. Consumption rates were calculated as prescriptions per 1000 population. Rates were examined overall and then stratified by medication, age, and sex. Secondary outcomes of interest included an examination of adherence to provincial special authority criteria; and proportions of outpatient antibiotic use attributable to administrative health records for CDI. The average annual rate of prescribing was 18.5 per 1000 population for all CDI-indicated antibiotics. The rate of prescribing increased (15%) over the 19-year study period, from 17.2 to 19.8 dispensations per 1000 population. Metronidazole accounted for the most antibiotics dispensed in every study year; however, by 2018 it demonstrated the most modest increase in use (15%). In comparison, fidaxomicin increased by 226% by 2018. Vancomycin had the highest percentage increase (621%), with the greatest change occurring from 2014 to 2015, correlating to the dissemination of new clinical practice guidelines. This is the first study to evaluate outpatient prescribing for CDI-indicated antibiotics, and one of the few studies to examine fidaxomicin since its introduction to Canadian formularies. Although causation cannot be inferred from study results, oral vancomycin, and fidaxomicin use has increased in line with, or in advance-of guidelines.

Variability in Reporting eGFR at Dialysis Initiation in Canada: A Research Letter.

Estimated glomerular filtration rate (eGFR) at dialysis initiation is increasingly recognized as a key quality indicator (QI) for patients with end-stage kidney disease (ESKD). Specifically, guidelines recommend assessing deferral of dialysis initiation until symptoms arise or if the eGFR is ≤6 mL/min/1.73 m2. Despite the recognition of the importance of this QI, how eGFR at the time of dialysis initiation is defined, collected, and tracked at dialysis centers across Canada remains unknown. To identify how provincial renal programs define eGFR at dialysis initiation, to compare practice across Canadian provinces, and to determine if there is a consistent benchmark for deferred dialysis start. Cross-sectional survey distributed to the medical leads of each provincial renal program, administered from July 2021 to November 2021. Quebec was not included given it did not yet participate in Canadian Organ Replacement Register (CORR) data submission. The survey was designed and distributed by the Canadian Society of Nephrology Quality Improvement & Implementation Science Committee (CSN-QUIS) Indicator Working Group. The survey asked respondents on how eGFR is defined, collected, reported, and perceived barriers to QI data collection. The National Senior Renal Leaders Forum helped identify the key provincial medical leads to disseminate the survey for completion. Surveys were distributed to the medical leads of the 9 provincial renal programs that participate in CORR. In total, there were 8 responses. Five provinces submit eGFR for all new dialysis starts and 3 provinces only submit this information for chronic patients. There is variation in determining when a patient with acute kidney injury requiring dialysis is classified as a chronic patient. Four provinces use a 30-day trigger, 3 provinces use a 90-day trigger, and the patient's nephrologist makes this determination in 1 province. The creatinine used for the eGFR at dialysis initiation was the value measured on the first dialysis session (ie, day 0) for 5 provinces; the last outpatient clinic creatinine value in 2 provinces, and 1 province did not have a standard definition. Three provinces did not have a benchmark target for eGFR at dialysis initiation, 1 province had a target of <9.5 mL/min/1.73 m2, 3 provinces had a target of <10 mL/min/1.73 m2, 1 province had a target of <15 mL/min/1.73 m2. All 8 responding provincial medical leads support the establishment of a national benchmark for this measure. This survey was restricted to provincial medical leads and therefore is unable to determine practice at individual dialysis sites. The survey was not anonymous, so it may be subject to conformity bias. There is wide variability in how eGFR at dialysis initiation is measured and reported across Canada. Additionally, there is no consensus on a benchmark target for an intent-to-defer dialysis strategy. Standardization of target eGFR at dialysis initiation may facilitate national reporting and quality improvement initiatives.

Structure and Function of a Provincial Renal Pharmacy Program: Applying the Chronic Care Model to Address Equitable Access to Medication and Pharmacy Services.

We described the rationale, structure, design, and components of a provincial pharmacy services network for patients with kidney disease as a model for enabling equitable access and universal care to pharmacy services and medications across a wide range of clinical conditions, and geographic expanse in British Columbia (BC). These include minutes from 53 Pharmacy Services and Formulary (PS&F) Committee meetings held from 1999 to November 2022, documentation available on the British Columbia Renal (BCR) website, direct observation and participation in committee meetings, as well as interviews with key individuals involved in different aspects of the program. We reviewed documents and data describing the evolution, rationale, and functioning of the BCR provincial pharmacy services system and used a variety of sources as mentioned above. In addition, a qualitative thematic synthesis of reports of chronic care models (CCMs) was conducted to map the program components into the chronic disease management models. The components of the provincial pharmacy program (PPP) include (1) a PS&F committee, with interdisciplinary and geographical representation; (2) a community of dispensing pharmacies with standardized protocols and information; (3) a dedicated medication and pharmacy services budget, and regular evaluation of budget, outcomes, and performance; (4) provincial contracts for specific medications; (5) communication and education; and (6) information management system. Program components are described in the context of chronic disease management models. The PPP includes dedicated formularies for people with kidney disease at different points in the disease trajectory, including those on and off dialysis. Equitable access to medications is supported across the province. All medications and counseling services are provided to all patients registered in the program, through a robust distributed model, including community- and hospital-based pharmacies. Provincial contracts managed centrally ensure best economic value, and centralized education and accountability structures ensure sustainability. Limitations of the current report include lack of formal evaluation of the program on patient outcomes, but this is relative as the intention of this article is to describe the program which has existed for over 20 years and is fully functional. Formal evaluation of a complex system would include by costs, cost avoidance, provider, and patients' satisfaction. We are developing a formal plan for this reason. The PPP is embedded in the provincial infrastructure of BCR and enables the provision of essential medications and pharmacy services for patients with kidney disease throughout the spectrum. The leveraging of local and provincial resources, knowledge, and expertise to implement a comprehensive PPP, ensures transparency and accountability and may serve as a model for other jurisdictions.

Measuring equity in spatial development investments for the provincial development program in Wasit governorate

To access the range of achieved equity in the spatial distribution for the investment by the region’s development program in Wasit province, the Gini coefficient, and Lorenz curve were utilized. Previously mentioned methodologies were used in the quantitative analysis. To measure the disparity and the optimal allocation of investments, a comparison is implemented. This comparison was between the percentage of allocating investment in development programs in the basic service sectors (municipal, sewage, water, roads, and education) and between the three components of (population, area, and level and disability). Findings showed that the local authorities depend on population (the municipal sector, sewage, urban water) and urban land area in allocating investments. Findings also showed a lack of interest by authorities in two factors. These factors are rural land area and the deficit in providing services. This deficit is reflected in the variation of equity in determining the number of investment allocations between different counties of Wasit province.

S-42-4: ISOLATED NOCTURNAL HYPERTENSION IN PATIENTS LIVING WITH HUMAN INMUNODEFICIENCY VIRUS (HIV)

Introduction: People living with HIV (PLHIV) have higher rates of cardiovascular events compared to the general population; however mechanisms behind this discrepancy are poorly understood. High prevalence of hypertension has been proposed as a mechanism underlying cardiovascular events with contradictory results when office blood pressure (BP) is considered. Ambulatory blood pressure measurements (ABPM) have the advantage to measure BP during sleep, a cause of masked hypertension. Additionally, body weight and electrolytes disturbances are common in PLHIV under antiretroviral and antibiotic therapy. We aim to describe the prevalence of isolated nocturnal hypertension (INH) and it characteristics in PLHIV. Material and methods: A random sample of PLHIV from the provincial HIV program in Cordoba, Argentina, underwent clinical and laboratory examination, and 24 h ABPM. Nocturnal hypertension (NH) was defined as nocturnal systolic BP ≥ 120 mmHg and or nocturnal diastolic BP≥70 mmHg. INH was defined in those patients with NH with daytime systolic and diastolic BP&lt; 135/85 mmHg respectively. Results: PLHIV were included in the study: 60% male, mean age was 44.6 (27–69) years old, 87% were receiving antiretroviral therapy. BMI was 25.8 ± 4.8, mean CD4 count was 404.4 ± 289, cells/ml and 86.2% were virologically suppressed. The prevalence of NH was 48.5% [95%CI:36–60%], the vast majority having INH 29/32 (90%), thus the population prevalence of INH was 43.9% [95%CI:32–55,%]. INH patients have an excess of 10.4 and 8 mmHg in 24 hr systolic BP and diastolic BP respectively compared to no INH patients (both p &lt; 0.001). No differences were found regards age, sex, viral load, CD4+ cells and years of HIV history between patients with and without INH. Multiple linear regression (adj-R2 = 0.27, p &lt; 0.001) adjusted by sex and age determined that BMI (β = 0.79, p = 0.02]), plasma uric acid (β = 0.33, p = 0.01) and plasma potassium (β = -9.5, p = 0.03]) independently predicted nocturnal systolic BP in PLHIV. In a multiple logistic regression model adjusted by age and sex, BMI≥30 was associated with INH (OR 4.04 [95%CI: 1.25–13) Conclusion: INH is highly prevalent in PLHIV conferring an excessive hypertension load that may explain the associated high CVS risk. Obesity, increased uric acid, and low plasma potassium are associated with nocturnal systolic BP. Our work suggests the routine use of ABPM and explore metabolic disturbances in obese PLHIV.

Observational Study Examining Kidney Transplantation Outcomes Following Donation From Individuals That Died of Drug Toxicity in British Columbia, Canada

The illicit drug toxicity (overdose) crisis has worsened across Canada, between 2016 and 2021 more than 28 000 individuals have died of drug toxicity. Organ donation from persons who experience drug toxicity death has increased in recent years. This study examines whether graft loss after kidney transplantation differed by donor cause of death. Retrospective cohort. Provincial transplant program of British Columbia, Canada. Transplant recipients who received kidney transplantation from deceased donors aged 12 to 70 years between 2013 and 2019 (N = 1012). Transplant recipient all cause graft loss (graft loss due to any cause including death) was compared by donor cause of death from drug toxicity or other. Five-year Kaplan-Meier estimates of all-cause graft survival, and 3-year complete as well as stratified inverse probability of treatment weighted Cox proportional hazards models were conducted. Drug toxicity death donors donated to 25% (252/1012) of kidney transplantations. Drug toxicity death donors were more likely to be young, white, males, with fewer comorbidities such as diabetes or hypertension but were more likely to have a terminal serum creatinine ≥1.5 mg/dL or be hepatitis C virus (HCV) positive. Unadjusted 5-year estimate of all-cause graft survival was 97% for recipients of drug toxicity donor kidneys and 83% for recipients of non-drug toxicity donor kidneys (P < .001). Recipients of drug toxicity death donor kidneys had decreased risk of all cause graft loss compared to recipients of non-drug toxicity death donor kidneys (hazard ratio [HR]: 0.30, 95% confidence interval [CI]: 0.12-0.77, P = .012). This is primarily due to the reduced risk of all-cause graft loss for recipients of younger (≤35 years) drug toxicity death donor kidneys (HR: 0.05, 95% CI: 0.00-0.55, P = .015). Potential selection bias, potential unmeasured confounding. Donation after drug toxicity death is safe and should be considered more broadly to increase deceased donor kidney donation.

Focused Jurisdictional Scan of Glomerulonephritis Medication Access in Canada: A Program Report.

Glomerulonephritis (GN) is a group of rare kidney diseases that is increasingly being managed with higher cost immunosuppressive (IS) agents in Canada. Ontario Health's Ontario Renal Network (ORN) oversees the management and delivery of GN services in the province. Stakeholder surveys previously conducted by ORN identified that both clinicians and patients do not perceive access to GN medications as comprehensive or timely. The program conducted a focused jurisdictional scan among 7 provinces to inform ORN initiatives to improve access to GN medications. Specifically, the program examined clinician experience with GN access, public drug coverage criteria, and timelines for public coverage for select IS agents (ie, tacrolimus, cyclosporine, mycophenolate mofetil [MMF], mycophenolate sodium, rituximab, and eculizumab) used to manage GN in adults who live in Canada. For the selected IS agents, a focused jurisdictional scan on medication access was conducted by ORN in 2018 and updated in July 2022. Information was obtained by searching the gray literature and/or credible online sources for public funding policies and eligibility criteria. Findings were supplemented by personal communications with provincial drug programs and consulting GN clinical experts from 7 provinces (ie, Alberta, British Columbia, Saskatchewan, Manitoba, Ontario, Nova Scotia, and Quebec). Clinicians from different provinces prescribe IS agents similarly for GN indications, despite distinctions in public drug funding policies. While patients can obtain public funding for many IS agents, for GN, most provinces rely on case-by-case review processes. In addition, provinces can vary in their funding criteria and which IS agents are listed on the public formulary. For IS agents that require prior authorization or case-by-case review, timelines vary by province with decisions taking a few days to weeks. British Columbia, with a GN-specific drug formulary, had the most integrated and efficient system for patients and prescribers. This scan primarily relied on publicly available information for drug coverage criteria and clinician experience with access in their province. Since this scan was conducted, public drug coverage criteria and/or application processes may have changed. While patients in most provinces have similar needs and nephrologists similar prescribing patterns, gaps still exist for publicly funded GN medications. Interprovincial differences in the drugs funded, funding criteria, and application process may affect timely and equitable access to GN medications across Canada. Given the rarity of GN, a pan-Canadian funding approach may be warranted to improve the current state.

Updates in Kidney Transplantation From the 2022 Banff-Canadian Society of Transplantation Joint Meeting: Conference Report.

The 2022 Banff-Canadian Society of Transplantation Meeting in Banff, Alberta, brought together transplant professionals to review new developments across various aspects of solid organ transplantation (SOT) in Canada. Presentations included consensus recommendations from expert-led forums; experiences with new procedures and legislation; reports from public health data repositories; original clinical and laboratory research; and industry updates regarding novel technologies. Speakers referenced articles and reports published in peer-reviewed journals and online, and unpublished data and preliminary findings. All authors attended presentations in-person or virtually. Recordings of select presentations were available for later review. Summaries emphasize concepts indicated by speakers as new and clinically relevant. The COVID-19 pandemic disproportionately affected solid organ transplant recipients (SOTRs), who experience worse outcomes of COVID-19 infection than the general population. Vaccinations demonstrate an attenuated immunological response in SOTRs yet provide meaningful protection. Monoclonal antibodies are effective for both passive immunization and treatment of COVID-19 in SOTRs. Infection control protocols have driven the development of virtual methods for clinical research, such as using home blood draws and virtual follow-up to evaluate vaccine efficacy in SOTRs; and patient care delivery, such as employing telerehabilitation post transplant. Access to living kidney donation is limited by various disincentives experienced by potential donors, which may be overcome by more efficient evaluations including a One-Day Living Kidney Donor Assessment Clinic. The International Donation and Transplantation Legislative and Policy Forum provided a means of establishing consensus guidance for organ donation and transplantation (ODT) program policy to standardize delivery across jurisdictions. The implementation of a deemed consent model for organ and tissue donation in Nova Scotia may provide insight as to whether this model indeed improves access to organs. Canada's Indigenous population experiences unique barriers to transplantation, prompting efforts for more inclusive ODT policy-making. The Pan-Canadian ODT Data and Performance Reporting System Project has defined performance quality indicators, of which iTransplant and other point-of-care software solutions may facilitate collection; however, these endeavors ultimately require information technology infrastructure that exceeds the capabilities of the existing Canadian Organ Replacement Register and Canadian Transplant Registry. Pig-to-human xenotransplantation requires genetic modification of pigs and xenoantibody testing in recipients but may yet prove viable. Serum cell-free DNA, urine biomarkers, and genetic markers offer an alternative to routine biopsy for identifying subclinical rejection. Modified perfusion temperatures and perfusion solutions with hydrogen sulfide donor compounds may improve organ preservation. Molecular compatibility tools provide another means of improving SOTR outcomes, and the Genome Canada Transplant Consortium has been examining important considerations of their implementation. We were unable to capture all presentations and topics at the meeting due to the sizable quantity and variety. Topics ultimately excluded from this summary include those in pathology including Banff Classification updates; those unique to extra-renal SOT; as well as numerous abstract and poster presentations, allied health provider forums, and business meetings. A portion of the material was presented by speakers prior to peer-review or publication. The various conference presentations summarized in this report identify methods by which individual clinicians and provincial ODT programs may improve access, delivery, and quality of SOT care in Canada, while additionally identifying gaps in the literature that investigators are encouraged to pursue.

Tuberculosis of Bones and Joints in Orthopedic

Background: Mycobacterium Tuberculosis (TB) is a major global health concern and burden on developing countries economy. Pakistan ranks in top 10 countries of the world with high load of TB and a big chunk of this disease process is extra pulmonary TB (EPTB). Among extra pulmonary sites, is bone and joint TB is very common yet under reported. Recent literature has found up to 35% of all extra pulmonary cases are bone and joint TB. Purpose: We aim to do an analysis of frequency of bone and joint TB in our institution in all new patients getting registered for treatment of TB. Methodology: This was retrospective analysis 8 years of Data collected in Gulab Devi Hospital Lahore. Data was analyzed using Microsoft excel software and results are tabulated. Findings: Total number of new registered patients of Extra-pulmonary Tuberculosis (EPTB) were 13000 (20%). Out of these EPTB patients, bone and joint TB diagnosis was made in 690(5.3%) patients. Out of these 690 patients, 400 (58%) cases were recorded in Indoor facility and 290 (42%) cases were seen in outdoor facility. Most common site is Spine 340 cases (85%) followed by Hip joint 16 cases (4%), knee joint 12 cases (3%) and upper limb 16 cases (4%). Practical Implication: Regarding management of newly registered cases, Gulab Devi hospital is working in collaboration with world Health Organization TB control program and Provincial TB control Program Punjab (PTP). All new cases are managed by multi-disciplinary team and after initial registration are referred to their relevant specialties. Conclusion: Axial skeleton remains the most common site in al literature and so is the conclusion of our analysis. Detailed research work is still needed in several aspects of this ancient disease to reduce the morbidity and mortality associated with it. Keywords: Bone and joint TB, Pulmonary Tuberculosis, Extra pulmonary Tuberculosis

Charles Scriver: Epitome of the physician scientist

Charles Scriver is a towering figure in the medical genetics community. At 92 he can look back upon a remarkable career that established the field of biochemical genetics, a subsection of medical genetics that is translating the developments in basic genetics into the diagnoses and treatments of inherited biochemical diseases. This biographical sketch summarizes the key achievements of Dr. Scriver in research and medicine, integrating the different components of medical genetics into comprehensive provincial programs, teaching a generation of physicians and researchers, and developing worldwide collaborations. Charles has been a mighty figure in so many ways. He began his career by bringing amino acid chromatography from London to North America, thereby greatly enlarging the scope of metabolic disorders. Subsequently, his editorship of the classic Metabolic and Molecular Bases of Inherited Disease brought metabolism into genetics and established the field of biochemical genetics. He discovered a number of new diseases and was the first to recognize shared mediated amino acid transporters in the kidney, a medical breakthrough that has become a basic concept of amino acid homeostasis. He led the formation of the Quebec Network of Genetic Medicine, incorporating screening, diagnosis, counseling, treatment and research of genetic diseases, which to this day serves as a model for collaborative and comprehensive medical genetic programs internationally. He initiated the development of sapropterin (Kuvan®), the first non-dietary treatment for phenylketonuria (PKU) and helped identify the mechanism of this cofactor's action on phenylalanine hydroxylase in variants of PKU. His laboratory also led the development of phenylalanine ammonia lyase (Palynziq®), an enzyme substitution therapy that now serves as an alternative to dietary treatment for PKU. The ecosystem that Charles generated at the deBelle laboratory was collegial and highly fruitful. With the input and support of his remarkable wife Zipper, he found a way to integrate the concept of family into his work environment. Bustling with an endless series of evolving activities, he generated an inclusive setting which drew on the talents of brilliant clinical and research staff, as well as the input of patients and their families. In all these efforts, Charles managed to answer his own musings summarized in the following three questions: Who do we serve? How do we serve? Why do we serve? Charles Scriver's life is one well lived. An extraordinary physician scientist whose accomplishments are cause for pause and wonder; generating volumes of contribution which will forever seem impossible for one individual to deliver.