Considerations for Creating a Restricted Data Environment with Complete Primary Care Electronic Medical Record Data.

Background: Historically, primary care databases have been limited to subsets of the full electronic medical record (EMR) data to maintain privacy. With the progression of artificial intelligence (AI) techniques (i.e., machine learning, natural language processing, and deep learning), practice-based research networks (PBRNs) have an opportunity to utilize previously difficult to access data to conduct essential primary care research and quality improvement. However, to ensure patient privacy and data security, novel infrastructure and processes are required. We describe the considerations related to accessing complete EMR data on a large-scale within a Canadian PBRN. Setting: Queen's Family Medicine Restricted Data EnviroNment (QFAMR), Department of Family Medicine (DFM), Queen's University, Canada Methods: QFAMR is a central holding repository hosted at the Centre for Advanced Computing at Queen's University. Complete, de-identified EMR records (e.g., full chart notes, PDFs, and free text) from approximately 18,000 patients from Queen's DFM can be accessed. An iterative process over 2021-2022 was used to develop QFAMR infrastructure in collaboration with Queen's DFM members and stakeholders. Results: In May 2021, the QFAMR standing research committee was established for review and approval of all potential projects. DFM members consulted with Queen's University computing, privacy, legal, and ethics experts to develop data access processes, policies and governance, agreements, and associated documents. Initial QFAMR projects involved applying and improving de-identification processes for DFM-specific full-chart notes. Five major elements were recurrent throughout the QFAMR development process: data and technology, privacy, legal documentation, decision-making frameworks, and ethics and consent. Conclusion: Overall, the development of the QFAMR has provided a secure platform to successfully access data-rich primary care EMR records without data ever leaving Queen's University. Although accessing complete primary care EMR records has certain technological, privacy, legal, and ethical considerations and challenges, QFAMR is a significant opportunity to conduct novel and innovative primary care research.

Screening patterns and identification of non-alcoholic fatty liver disease in obese children in canadian primary care.

Context. Non-alcoholic fatty liver disease (NAFLD) is the most common cause of chronic liver disease in children. There is no epidemiological data on rates of pediatric NAFLD in Canada. Primary care physicians (PCPs) are often the first contact healthcare professionals to manage potential pediatric patients with NAFLD. Objective: Evaluate patterns of screening and identification of pediatric NAFLD in Canadian primary care using administrative health care database. Study Design: Cross-sectional observational study. Dataset: The Canadian Primary Care Sentinel Surveillance Network (CPCSSN), a repository of clinical electronic medical record data drawn from primary care practices across Canada. Population Studied: Children aged 9-18 years old between July 1, 2018 and December 31, 2019. Outcome Measures: The proportion of children eligible for screening (BMI≥95th percentile) as per NASPGHAN guidelines using ALT levels. Logistic Regression was used to evaluate the predictors for screening. Suspected NAFLD was defined as elevated ALT (>22 U/L for girls and > 26 U/L for boys) in the absence of viral hepatitis, metabolic conditions, alcohol use, hepatotoxic medications. Results: The study sample consisted of 66,872 children, of which 15.8% (n=10,539) had a BMI≥95th percentile and only 10.1% (n=1,067/10539) were screened in the last year using ALT. Children were more likely to get screened if they were a) older (13-18 year vs 9-12 year, OR=1.63, 95% CI 1.38-1.93); b) living in an urban setting (OR=1.34, 95% CI 1.0-1.63); and c) had a higher BMI (≥99th percentile vs 95th-98th, OR=1.34, 95% CI 1.14, 1.56). We identified 855 cases of suspected NAFLD, most children (78.5%) were older (13-18 years), male (55.0%), and lived in an urban setting (71.5%). A significant proportion (40.4%) had a BMI in the 99th percentile and 60.3% had at least one comorbidity, and 35.9% were prescribed a psychotropic, antidiabetic or antihypertensive medications. Only 19.9% were referred to a specialist (pediatrician, gastroenterologist). Conclusions: This is the first study to estimate the screening patterns of pediatric NAFLD in primary care in Canada at a national level. The study revealed low screening rates in primary care, these results will help facilitate prioritization of care and future work that could evaluate successful implementation strategies while emphasizing the role of PCPs in screening and managing pediatric NAFLD in Canadian health care setting.

Evaluation of mental health first aid training for family members of military veterans with a mental health condition.

BACKGROUND: A concerning proportion of former Australian Defence Force (ADF) members meet criteria for a mental health condition. Mental health difficulties not only affect the individual veteran. They have been found to negatively impact the mental health of family, with an increased likelihood for family members of veterans developing a mental health condition. The aim of this study was to evaluate whether participating in a Mental Health First Aid (MHFA) program improved family members of veterans mental health knowledge, reduced personal and perceived mental health stigma, reduced social distancing attitudes and increased confidence and willingness to engage in MHFA helping behaviours. Additionally, the study measured participant's general mental health and levels of burnout. METHOD: The study utilised an uncontrolled design with assessment at three time points (baseline, post-program and three-month follow-up). Participants (N = 57) were immediate and extended family members of former ADF members with a mental health condition, who took part in a two-day standard adult MHFA program. At each time point, participants completed self-report measures assessing mental health knowledge, personal and perceived mental health stigma, social distancing attitudes, confidence and willingness to engage in MHFA helping behaviours, general mental health and burnout. Cochranes Q and repeated measures ANOVA was computed to measure the impact of time on the outcome variables. RESULTS: Results indicated significant improvements in MHFA knowledge and confidence in providing MHFA assistance. Significant reductions in personal mental health stigma (i.e. an individual's attitude towards mental health) for schizophrenia were observed and maintained at follow up. High levels of perceived mental health stigma (i.e. the belief an individual holds about others attitudes towards mental health) were reported with no significant changes observed following the MHFA program. Results did not indicate any significant benefit in improving general psychological distress or burnout at follow up. The participant sample had high levels of mental health difficulties with over half reporting a lifetime mental health diagnosis. CONCLUSION: The study is an important contribution to the international literature on MHFA. The provision of a MHFA program to family members of military veterans has not previously been evaluated. Implications of the findings are discussed with regards to future directions of MHFA research and implementing MHFA programs in this population.

Behavioral Segmentation for Enhanced Peer-to-Peer Patient Education.

The aim of this study was to develop a peer-to-peer virtual intervention for patients with type 2 diabetes from different segments: patients who take several medications (medication group), patients who do not take diabetes medications (lifestyle group), and a mixed group. Preliminary results showed that patients in the lifestyle group were interested in preventive strategies, reporting better learning experience and higher motivation than those in the medication group. Future research is needed to design approaches tailored to patients in the medication group.

Screening Patterns of Nonalcoholic Fatty Liver Disease in Children with Obesity in Canadian Primary Care: A Cross-Sectional Study.

Background: Nonalcoholic fatty liver disease (NAFLD) is the most common pediatric chronic liver disease, and children with a body mass index (BMI) ≥95th percentile are recommended to be screened for NAFLD by liver enzymes. Objectives: This study aimed to determine the frequency and predictors of screening for NAFLD among children with obesity in Canada and to evaluate a sample of children with suspected NAFLD. Methods: This cross-sectional study used data from the Canadian Primary Care Sentinel Surveillance Network, a repository of electronic medical record data from Canadian primary care practices. Results: Of n = 110,827 children aged 9-18 years, 13.9% (n = 9,888) had a BMI ≥95th percentile. Only 8.7% (n = 859) of these patients were screened for NAFLD in the last year, and 23.6% (n = 2336) were ever screened. Using logistic regression, screening in the last year was associated with demographic and clinical characteristics, including previous liver enzyme assessment, prior antidiabetic prescription, and prior anxiolytic prescription. Among children with suspected NAFLD (n = 1,046), 34.7% had a BMI ≥99th percentile and approximately 8% were at increased risk of significant liver disease. Conclusion: The study revealed low screening rates for NAFLD in Canadian primary care and highlighted the important role of primary care providers in identifying and managing pediatric NAFLD.

BBS genotype-phenotype assessment of a multiethnic patient cohort calls for a revision of the disease definition.

Bardet-Biedl syndrome (BBS) is a ciliopathy characterized by retinal degeneration, obesity, polydactyly, renal abnormalities, and cognitive impairment for which 15 causative genes have been identified. Here we present the results of a mutational analysis of our multiethnic cohort of 83 families (105 cases); 75.9% of them have their mutations identified including 26 novel changes. Comprehensive phenotyping of these patients demonstrate that the spectrum of clinical features is greater than expected and overlapped with the features of other ciliopathies; specifically Alström and McKusick-Kauffman syndromes.

Comparison of Sleep Patterns in Vietnam Veterans With and Without Posttraumatic Stress Disorder Using Wrist Actigraphy.

STUDY OBJECTIVES: Disturbed sleep is a hallmark feature of posttraumatic stress disorder (PTSD). However, few studies have examined sleep objectively in individuals with PTSD compared to trauma-exposed controls. This study used wrist actigraphy to measure and compare sleep patterns in trauma-exposed Australian Vietnam veterans (VV) with and without PTSD. METHODS: Trauma-exposed Australian VV with and without PTSD were recruited from the PTSD Initiative. VV wore wrist accelerometers over 14 days and completed daily sleep diaries. Sleep parameters were compared between groups including sleep latency (SL), time in bed (TIB), total sleep time (TST), wake after sleep onset (WASO), and movement index (MI). Night-to-night and overall within-individual variability were assessed by root mean squared successive differences and comparison of individual standard deviations. Correlations between sleep diary (self-reported) and wrist actigraphy (objective) variables were also assessed. RESULTS: A total of 40 male VV (20 with PTSD) participated in the study. We found no difference in sleep patterns determined by wrist actigraphy between groups with the exception of reduced SL in VV with PTSD (3.9 ± 0.9 versus 4.9 ± 1.4 minutes, P < .05). Overall within-individual variability was significantly greater in VV with PTSD for TIB, TST, WASO, and MI. Self-reported and objective TST and WASO were more strongly correlated in VV without PTSD than those with PTSD. CONCLUSIONS: Although there were no significant differences in sleep parameters, VV with PTSD had increased within-individual overall sleep variability and reduced correlation between self-reported and objective sleep parameters compared to trauma-exposed controls. Further evaluation of extended sleep patterns by actigraphy in VV with PTSD is warranted.

Conflicting relationship between dietary intake and metabolic health in PTSD: A systematic review.

Posttraumatic stress disorder (PTSD) is a disabling psychological condition associated with significant physical comorbidities. There has been growing evidence to support the relationship between PTSD and cardiometabolic disease. Disordered eating behaviors often seen in people with PTSD symptoms may explain increased cardiometabolic risk. This systematic review aimed to assess the quality of evidence surrounding dietary intake of individuals with symptoms or a diagnosis of PTSD and their associated risk with cardiometabolic health outcomes. Online databases Scopus, ProQuest (Health), Embase, Medline, PsycINFO, and CINAHL with Full Text were searched for peer-reviewed English articles prior to December 2017 that examined dietary intake and cardiometabolic health outcomes in adults with PTSD symptoms or diagnosis. The quality of each study was graded based on the design and methodology using adapted quality assessment tools. Seven studies with five unique participant samples were included in the review. Study methods, design, populations, and outcomes were inconsistent across studies. Dietary intake was considerably varied and limited associations were demonstrated between dietary intake and cardiometabolic risk factors in the PTSD cohorts. Due to the variability of measures and study outcomes, there was insufficient evidence to determine the relationship between dietary intake and PTSD-related cardiometabolic health outcomes. Future studies are needed to examine these associations in individuals with PTSD: specifically higher quality descriptive studies are necessary to confirm a link between diet and cardiometabolic disease in PTSD.

Sleep Disturbances in Australian Vietnam Veterans With and Without Posttraumatic Stress Disorder.

STUDY OBJECTIVES: Posttraumatic stress disorder (PTSD) is a condition that may develop after a traumatic event, particularly combat-related trauma. Although sleep disturbance is a hallmark of PTSD, the prevalence of sleep disturbances in Australian veterans with PTSD remains uncertain. This study aimed to subjectively compare the prevalence of sleep disturbances in Australian Vietnam veterans with and without PTSD. METHODS: A cross-sectional cohort study compared trauma-exposed Australian Vietnam veterans with and without PTSD. PTSD diagnosis was confirmed using the Clinician Administered PTSD Scale for DSM-5. Sleep information was evaluated using supervised structured questionnaires, including Epworth Sleepiness Scale (ESS) and Berlin and Mayo Questionnaires. RESULTS: Two hundred fourteen male Vietnam veterans (108 with PTSD) were included. Participants with PTSD had higher body mass index (30.3 versus 29 kg/m2; P < .05), higher ESS score (9.2 versus 7.6; P < .05), and increased alcohol or medication use to assist with sleep (19% versus 6%; P < .01; and 44% versus 14%; P < .01). Those with PTSD were less likely to sleep well (32% versus 72%; P < .01) and reported higher rates of restless legs (45% versus 25%; P < .01), nightmares (91% versus 29%; P < .01), nocturnal screaming (73% versus 18%; P < .01), sleep terrors (61% versus 13%; P < .01) and dream enactment (78% versus 11.8%; P < .01). The PTSD group had higher rates of diagnosed OSA (42% versus 21%; P < .01) and an increased risk of OSA on the Berlin Questionnaire (69% versus 43%; P < .01). CONCLUSIONS: Compared to trauma-exposed controls, Australian Vietnam veterans with PTSD demonstrated an increased prevalence of a wide range of sleep disturbances, including OSA. In veterans with PTSD, detailed sleep assessment, including consideration of polysomnography, is paramount.

Detailed Polysomnography in Australian Vietnam Veterans With and Without Posttraumatic Stress Disorder.

STUDY OBJECTIVES: Recent results from the PTSD Initiative, a cross-sectional cohort study in Australian Vietnam veterans (VV) with and without posttraumatic stress disorder (PTSD), demonstrated an increased prevalence of self-reported sleep disturbances in those with PTSD. This study aimed to objectively assess the prevalence of sleep disorders in the same cohort using detailed polysomnography (PSG). METHODS: Participants from the PTSD Initiative were recruited to undergo PSG. PTSD status was determined with the Clinician Administered PTSD Scale for DSM-5 (CAPS-5). Subjective sleep information was attained via structured questionnaires. Data from single night PSG were compared between trauma-exposed VV with and without PTSD. RESULTS: A total of 74 trauma-exposed male VV (40 with PTSD) underwent PSG (prospective n = 59, retrospective n = 15). All PSG parameters were similar between groups. No difference was seen in PSG-diagnosed obstructive sleep apnea (OSA) or periodic limb movements of sleep (PLMS). VV with PTSD showed a trend toward increased duration of sleep with oxygen saturations < 90% (10% versus 1.8%; P = .07). VV with PTSD reported increased sleep onset latency (42.4 versus 13.3 minutes; P < .01); were less likely to report sleeping well (32.5% versus 67.5%; P < .01); had higher OSA risk using Berlin Questionnaire (BQ) (70% versus 38.2%; P < .01); and had higher rates of partner-reported limb movements (56.4% versus 17.6%; P < .01). No association between PSG-diagnosed OSA and PTSD severity was evident. CONCLUSIONS: In Australian VV with and without PTSD, no difference was seen across all PSG parameters including the diagnosis and severity of OSA and PLMS. However, VV with PTSD demonstrated an increased perception of sleep disturbances.