Care trajectories around a first dementia diagnosis in patients with serious mental illness.

AIM: To develop a typology of care trajectories (CTs) 1 year before and after a first dementia diagnosis in individuals aged ≥65 years, with prevalent schizophrenia or bipolar disorder. METHODS: This was a longitudinal, retrospective cohort study using health administrative data (1996-2016) from Quebec (Canada). We selected patients aged ≥65 years with an incident diagnosis of dementia between 1 January 2014 and 31 December 2016, and a diagnosis of schizophrenia and/or or bipolar disorder. A CT typology was generated by a multidimensional state sequence analysis based on the "6 W" model of CTs. Three dimensions were considered: the care setting ("where"), the reason for consultation ("why") and the specialty of care providers ("which"). RESULTS: In total, 3868 patients were categorized into seven distinct types of CTs, with varying patterns of healthcare use and comorbidities. Healthcare use differed in terms of intensity, but also in its distribution around the diagnosis. For instance, whereas one group showed low healthcare use, healthcare use abruptly increased or decreased after the diagnosis in other groups, or was equally distributed. Other significant differences between CTs included mortality rates and use of long-term care after the diagnosis. Most patients (67%) received their first dementia diagnosis during hospitalization. CONCLUSIONS: Our innovative approach provides a unique insight into the complex healthcare patterns of people living with serious mental illness and dementia, and provides an avenue to support data-driven decision-making by highlighting fragility areas in allocating care resources. Geriatr Gerontol Int 2024; 24: 577-586.

Treatment with psychostimulants and atomoxetine in people with psychotic disorders: reassessing the risk of clinical deterioration in a real-world setting.

BACKGROUND: Although attention-deficit hyperactivity disorder (ADHD) is often comorbid with schizophrenia spectrum and other psychotic disorders (SZSPD), concerns about an increased risk of psychotic events have limited its treatment with either psychostimulants or atomoxetine. AIMS: To examine whether the risk of hospital admission for psychosis in people with SZSPD was increased during the year following the introduction of such medications compared with the year before. METHOD: This was a retrospective cohort study using Quebec (Canada) administrative health registries, including all Quebec residents with a public prescription drug insurance plan and a diagnosis of psychotic disorder, defined by relevant ICD-9 or ICD-10 codes, who initiated either methylphenidate, amphetamines or atomoxetine, between January 2010 and December 2016, in combination with antipsychotic medication. The primary outcome was time to hospital admission for psychosis within 1 year of initiation. State sequence analysis was also used to visualise admission trajectories for psychosis in the year following initiation of these medications, compared with the previous year. RESULTS: Out of 2219 individuals, 1589 (71.6%) initiated methylphenidate, 339 (15.3%) amphetamines and 291 (13.1%) atomoxetine during the study period. After adjustment, the risk of hospital admission for psychosis was decreased during the 12 months following the introduction of these medications when used in combination with antipsychotics (adjusted HR = 0.36, 95% CI 0.24-0.54; P < 0.0001). CONCLUSIONS: These findings suggest that, in a real-world setting, when used concurrently with antipsychotic medication, methylphenidate, amphetamines and atomoxetine may be safer than generally believed in individuals with psychotic disorders.

Machine learning to improve frequent emergency department use prediction: a retrospective cohort study.

Frequent emergency department use is associated with many adverse events, such as increased risk for hospitalization and mortality. Frequent users have complex needs and associated factors are commonly evaluated using logistic regression. However, other machine learning models, especially those exploiting the potential of large databases, have been less explored. This study aims at comparing the performance of logistic regression to four machine learning models for predicting frequent emergency department use in an adult population with chronic diseases, in the province of Quebec (Canada). This is a retrospective population-based study using medical and administrative databases from the Régie de l'assurance maladie du Québec. Two definitions were used for frequent emergency department use (outcome to predict): having at least three and five visits during a year period. Independent variables included sociodemographic characteristics, healthcare service use, and chronic diseases. We compared the performance of logistic regression with gradient boosting machine, naïve Bayes, neural networks, and random forests (binary and continuous outcome) using Area under the ROC curve, sensibility, specificity, positive predictive value, and negative predictive value. Out of 451,775 ED users, 43,151 (9.5%) and 13,676 (3.0%) were frequent users with at least three and five visits per year, respectively. Random forests with a binary outcome had the lowest performances (ROC curve: 53.8 [95% confidence interval 53.5-54.0] and 51.4 [95% confidence interval 51.1-51.8] for frequent users 3 and 5, respectively) while the other models had superior and overall similar performance. The most important variable in prediction was the number of emergency department visits in the previous year. No model outperformed the others. Innovations in algorithms may slightly refine current predictions, but access to other variables may be more helpful in the case of frequent emergency department use prediction.

Association between sustained opioid prescription and frequent emergency department use: a cohort study.

BACKGROUND: Chronic non-cancer pain (CNCP) is common among frequent emergency department (ED) users, although factors underlying this association are unclear. This study estimated the association between sustained opioid use and frequent ED use among patients with CNCP. METHODS: Retrospective cohort study using a Canadian provincial health insurer database (Régie d'Assurance Maladie du Québec). The database included adults with both ≥1 chronic condition and ≥ 1 ED visit in 2012 or 2013. Inclusion in the study further required a CNCP diagnosis, public drug insurance coverage and 1-year survival after the first ED visit in 2012 or 2013 (index visit). Multivariable logistic regression was used to derive ORs of frequent ED use (≥5 visits in the year following the index visit) subsequent to sustained opioid use (≥60 days opioids prescription within 90 days preceding the index visit), adjusting for important covariables. RESULTS: From 576 688 patients in the database, 58 237 were included in the study. Of these, 4109 (7.1%) had received a sustained opioid prescription and 4735 (8.1%) were frequent ED users in the follow-up year. Sustained opioid use was not associated with frequent ED use in the multivariable model (OR: 1.06, 95% CI 0.94 to 1.19). Novel associated covariables were benzodiazepine prescription (OR: 1.21, 95% CI 1.12 to 1.30) and polypharmacy (OR: 1.23, 95% CI 1.13 to 1.34). CONCLUSIONS: Due to confounding by social and medical vulnerability, patients with CNCP with sustained opioid use appear to have a higher propensity for frequent ED use in unadjusted models. However, sustained opioid use was not associated with frequent ED use in these patients after adjustment.

Demand management processes to improve access to cognitive-behavioral therapies for anxiety disorders: a grounded theory study.

Introduction: Anxiety disorders are impactful mental health conditions for which evidence-based treatments are available, notably cognitive-behavioral therapies (CBTs). Even when CBTs are available, demand-side factors limit their access, and actors in a position to perform demand management activities lack a framework to identify context-appropriate actions. Methods: We conducted a constructivist grounded theory study in Quebec, Canada, to model demand management targets to improve access to CBTs for anxiety disorders. We recruited key informants with diverse experiences using purposeful, then theoretical sampling. We analyzed data from 18 semi-directed interviews and 20 documents through an iterative coding process centered around constant comparison. Results: The resulting model illustrates how actors can target clinical-administrative processes fulfilling the demand management functions of detection, evaluation, preparation, and referral to help patients progress on the path of access to CBTs. Discussion: Modeling clinical-administrative processes is a promising approach to facilitate leveraging the competency of actors involved in demand management at the local level to benefit public mental health.

Distinct care trajectories among persons living with arthritic conditions: A two-year state sequence analysis.

Objectives: Developing solutions to optimize care trajectories (CareTs) requires examining patient journeys through the health care system. This study aimed to describe CareTs among people living with arthritis and evaluate their association with self-reported health outcomes. Methods: Analyses were conducted using the TorSaDE Cohort (n = 102,148), which connects the 2007 to 2016 Canadian Community Health Surveys (CCHS) with Quebec administrative databases (longitudinal claims). CareTs of participants living with arthritis according to CCHS (n = 16,631), over the two years before CCHS completion, were clustered using state sequence analysis (months as a time unit). CareT group membership was then put in association with self-reported outcomes (pain intensity and interference, self-perceived general and mental health). Results: The analysis revealed five CareT groups characterized predominantly by: (1) arthritis-related visits to a specialist (n = 2,756; 16.6%), (2) arthritis-related emergency department visits (n = 2,928; 17.6%), (3) very high all-cause health care utilization and arthritis-related hospitalizations (n = 1,570; 9.4%), (4) arthritis-related medical visits to general practitioners and specialists (n = 2,708; 16.3%), (5) low all-cause health care utilization (n = 6,669; 40.1%). Multivariable results revealed that CareT group membership was associated with higher levels of pain interference (CareT group #3 vs. #5: OR: 1.4, 95%CI: 1.1-1.8) and fair/poor self-perceived general health (CareT group #1 vs. #5: OR: 1.551, 95%CI: 1.319-1.824; #2 vs. #5: OR: 1.244, 95%CI: 1.062-1.457; #3 vs. #5: OR: 1.771, 95%CI: 1.451-2.162; #4 vs. #5: OR: 1.481, 95%CI: 1.265-1.735). Discussion: Sate sequence analysis is an innovative method of studying CareTs and valuable for making evidence-based decisions taking into account inter- and intra-individual variability.

Profiles of frequent emergency department users with chronic conditions: a latent class analysis.

OBJECTIVES: Frequent emergency department users represent a small proportion of users while cumulating many visits. Previously identified factors of frequent use include high physical comorbidity, mental health disorders, poor socioeconomic status and substance abuse. However, frequent users do not necessarily exhibit all these characteristics and they constitute a heterogeneous population. This study aims to establish profiles of frequent emergency department users in an adult population with chronic conditions. DESIGN: This is a retrospective cohort study using administrative databases. SETTING: All adults who visited the emergency department between 2012 and 2013 (index date) in the province of Quebec (Canada), diagnosed with at least one chronic condition, and without dementia were included. Patients living in remote areas and who died in the year following their index date were excluded. We used latent class analysis, a probability-based model to establish profiles of frequent emergency department users. Frequent use was defined as having five visits or more during 1 year. Patient characteristics included sociodemographic characteristics, physical and mental comorbidities and prior healthcare utilisation. RESULTS: Out of 4 51 775 patients who visited emergency departments at least once in 2012-2013, 13 676 (3.03%) were frequent users. Four groups were identified: (1) 'low morbidity' (n=5501, 40.2%), (2) 'high physical comorbidity' (n=3202, 23.4%), (3) 'injury or chronic non-cancer pain' (n=2313, 19.5%) and (4) 'mental health or alcohol/substance abuse' (n=2660, 16.9%). CONCLUSIONS: The four profiles have distinct medical and socioeconomic characteristics. These profiles provide useful information for developing tailored interventions that would address the specific needs of each type of frequent emergency department users.

Multidimensional analysis of adult patients' care trajectories before a first diagnosis of schizophrenia.

For patients at high-risk for developing schizophrenia, a delayed diagnosis could be affected, among many reasons, by their patterns of healthcare use. This study aims to describe and generate a typology of patients' care trajectories (CTs) in the 2 years preceding a first diagnosis of schizophrenia, over a medico-administrative database of 3712 adults with a first diagnosis between April 2014 and March 2015 in Quebec, Canada. This study applied a multidimensional approach of State Sequence Analysis, considering together sequences of patients' diagnoses, care settings and care providers. Five types of distinct CTs have emerged from this data-driven analysis: The type 1, shared by 77.6% of patients, predominantly younger men, shows that this group sought little healthcare, among which 17.5% had no healthcare contact for mental disorders. These individuals might benefit from improved promotion and prevention of mental healthcare at the community level. The types 2, 3 and 4, with higher occurrence of mental disorder diagnoses, represent together 19.5% of the study cohort, mostly middle-aged and women. These CTs, although displaying roughly similar profiles of mental disorders, revealed very dissimilar sequences and levels of care providers encounters, primary and specialized care use, and hospitalizations. Surprisingly, patients of these CTs had few consultations with general practitioners. An increased attentiveness for middle-aged patients and women with high healthcare use for mental disorders could help to reduce delayed diagnosis of schizophrenia. This calls for further consideration of healthcare services for severe mental illness beyond those offered to young adults.

Strategies to improve access to cognitive behavioral therapies for anxiety disorders: A scoping review.

BACKGROUND: Strategies to improve access to evidence-based psychological treatments (EBPTs) include but are not limited to implementation strategies. No currently available framework accounts for the full scope of strategies available to allow stakeholders to improve access to EBPTs. Anxiety disorders are common and impactful mental conditions for which EBPTs, especially cognitive-behavioral therapies (CBT), are well-established yet often hard to access. OBJECTIVE: Describe and classify the various strategies reported to improve access to CBT for anxiety disorders. METHODS: Scoping review with a keyword search of several databases + additional grey literature documents reporting on strategies to improve access to CBT for anxiety disorders. A thematic and inductive analysis of data based on grounded theory principles was conducted using NVivo. RESULTS: We propose to classify strategies to improve access to CBT for anxiety disorders as either "Contributing to the evidence base," "Identifying CBT delivery modalities to adopt in practice," "Building capacity for CBT delivery," "Attuning the process of access to local needs," "Engaging potential service users," or "Improving programs and policies." Each of these strategies is defined, and critical information for their operationalization is provided, including the actors that could be involved in their implementation. IMPLICATIONS: This scoping review highlights gaps in implementation research regarding improving access to EBPTs that should be accounted for in future studies.

Antipsychotic utilization trajectories three years after initiating or reinitiating treatment of schizophrenia: A state sequence analysis approach.

OBJECTIVE: This study aims to describe the utilization patterns of antipsychotic (AP) medication in patients with schizophrenia (SCZ), three years after initiating or reinitiating a given AP. METHODS: Based on medico-administrative information on patients living in Quebec (Canada), this retrospective cohort study included 6444 patients with a previous diagnosis of SCZ initiating or reinitiating AP medication between January 1, 2012, and December 31, 2014, with continuous coverage by public drug insurance. For each day of follow-up (1092 days), patient was either exposed to one of the chosen categories of APs, or to none. This patient's sequence of AP exposure overtime has been referred to as the "antipsychotic utilization trajectory". These trajectories were analyzed using a State Sequence Analysis, an innovative approach which provides useful visual information on the continuation and discontinuation patterns of use over time. RESULTS: Clozapine and long-acting injectable second-generation APs had the best continuation and discontinuation patterns over 3 years among all other groups, including less switching of APs, while oral first-generation APs had the poorest patterns. These findings were comparable among incident and non-incident cohorts. Oral second-generation antipsychotics, excluding clozapine, had a poorer continuation and discontinuation pattern than long-acting injectable antipsychotics. CONCLUSION: State Sequence Analysis provides a clear representation of treatment adherence in comparison with dichotomous indicators of adherence or discontinuation. Consequently, this innovative method has shed light on the impact of the AP chosen to initiate or reinitiate treatment in SCZ, which has been identified as a key factor for long-term treatment continuation and discontinuation.

Comparative effectiveness and safety of antipsychotic drugs in patients with schizophrenia initiating or reinitiating treatment: A Real-World Observational Study.

OBJECTIVE: To compare the effectiveness and safety of various second-generation antipsychotics (SGAs), newer oral and long-acting injectable (LAI) SGAs, and first-generation antipsychotics (FGAs) treatments in patients with schizophrenia or schizoaffective disorder (SCZ). METHODS: This retrospective cohort study included medical administrative information for patients with a diagnosis of SCZ living in Quebec (Canada), initiating or reinitiating at least one antipsychotic (AP) drug (with a clearance baseline period of 12 months without any APs). Effectiveness was defined by a reduced risk of hospitalization for mental disorder and discontinuation, and safety by a reduced risk of all-cause death and hospitalization for non-mental disorder, 2 years after AP initiation or reinitiation. Cox proportional hazard models were used to estimate the events associated with different antipsychotics compared with oral olanzapine. RESULTS: The study cohort included 19,615 patients initiating or reinitiating an antipsychotic drug between January 2006 and December 2015. Results showed better effectiveness of clozapine (adjusted HR 0.36, 95% CI 0.30-0.42, p < 0.0001) and LAI SGAs (adjusted HR 0.56, 95% CI 0.51-0.61, p < 0.0001) compared with oral olanzapine when adding discontinuation to hospitalizations for mental disorder as a composite measure of effectiveness, as opposed to oral FGAs (adjusted HR 1.36, 95% CI 1.27-1.46, p < 0.0001) and LAI FGAs (adjusted HR 1.22, 95% CI 1.12-1.32, p < 0.0001). Most APs were as safe as oral olanzapine. CONCLUSION: The effectiveness of LAI SGAs and clozapine appears to justify their use and are as safe as a recognized treatment (oral olanzapine) in Quebec (Canada).

Association between previous and future antipsychotic adherence in patients initiating clozapine: real-world observational study.

BACKGROUND: Although recognised as the most effective antipsychotic for treatment-resistant schizophrenia, clozapine remains underused. One reason is the widespread concern about non-adherence to clozapine because of poor adherence before initiating clozapine. AIMS: To determine if prior poor out-patient adherence to treatmentbefore initiating clozapine predisposes to poor out-patient adherence to clozapine or to any antipsychotics (including clozapine) after its initiation. METHOD: This cohort study included 3228 patients with schizophrenia living in Quebec (Canada) initiating (with a 2-year clearance period) oral clozapine (index date) between 2009 and 2016. Using pharmacy data, out-patient adherence to treatment was measured by the medication possession ratio (MPR), over a 1-year period preceding and following the index date. Five groups of patients were formed based on their prior MPR level (independent variable). Two dependent variables were defined after clozapine initiation (good out-patient adherence to any antipsychotics and to clozapine only). Along with multiple logistic regressions, state sequence analysis was used as a visual representation of antipsychotic-use trajectories over time, before and after clozapine initiation. RESULTS: Although prior poor adherence to antipsychotics was associated with poor adherence after clozapine initiation, the absolute risk of subsequent poor adherence remained low, regardless of previous adherence level. Most patients adhered to their treatment after initiating clozapine (>68% to clozapine and >84% to any antipsychotics). CONCLUSIONS: Despite the fact that poor adherence prior to initiating clozapine is widely recognised by clinicians as a barrier for the prescription of clozapine, the current study supports the initiation of clozapine in all eligible patients.

The validity of diagnostic algorithms to identify asthma patients in healthcare administrative databases: a systematic literature review.

Objectives To review the available evidence supporting the validity of algorithms to identify asthma patients in healthcare administrative databases.Methods A systematic literature search was conducted on multiple databases from inception to March 2020 to identify studies that reported the validity of case-finding asthma algorithms applied to healthcare administrative data. Following an initial screening of abstracts, two investigators independently assessed the full text of studies which met the pre-determined eligibility criteria. Data on study population and algorithm characteristics were extracted. A revised version of the Quality Assessment of Diagnostic Accuracy Studies tool was used to evaluate the risk of bias and generalizability of studies.Results: A total of 20 studies met the eligibility criteria. Algorithms which incorporated ≥1 diagnostic code for asthma over a 1-year period appeared to be valid in both adult and pediatric populations (sensitivity ≥ 85%; specificity ≥ 89%; PPV ≥ 70%). The validity was enhanced when: (1) the time frame to capture asthma cases was increased to two years; (2) ≥2 asthma diagnostic codes were considered; and (3) when diagnoses were recorded by a pulmonologist. Algorithms which integrated pharmacy claims data appeared to correctly identify asthma patients; however, the extent to which asthma medications can improve the validity remains unclear. The quality of several studies was high, although disease progression bias and biases related to self-reported data was observed in some studies.ConclusionsHealthcare administrative databases are adequate sources to identify asthma patients. More restrictive definitions based on both asthma diagnoses and asthma medications may enhance validity, although further research is required to confirm this hypothesis.

Comparison of Long-term Outcomes of Valve-Sparing and Transannular Patch Procedures for Correction of Tetralogy of Fallot.

Importance: The choice of the right surgical technique for correction of tetralogy of Fallot (TOF) is contentious for patients with a moderate to severe right outflow tract obstruction. The use of a transannular patch (TAP) exposes patients to chronic pulmonary regurgitation, while valve-sparing (VS) procedures may incompletely relieve pulmonary obstruction. Objective: To compare 30-year outcomes of TOF repair after a VS procedure vs TAP. Design, Setting, and Participants: This retrospective population-based cohort study was conducted among all patients with TOF born in the province of Quebec, Canada, from 1980 to 2015 who underwent complete surgical repair. Patients who received a TAP or VS procedure were matched using a propensity score based on preoperative factors in a 1:1 ratio. Data were analyzed from March 2020 through April 2021. Exposures: The study groups were individuals who received TAP and those who received VS. The VS group was further stratified by the presence of residual pulmonary stenosis. Main Outcomes and Measures: The primary outcome was all-cause mortality, with 30-year survival evaluated using Cox proportional-hazards models. Secondary outcomes included the cumulative mean number of cardiovascular interventions, pulmonary valve replacements (PVRs), and cardiovascular hospitalizations were evaluated using marginal means/rates regressions. Results: Among 683 patients with TOF (401 patients who underwent TAP [58.7%] and 282 patients who underwent a VS procedure [41.3%]), adequate propensity score matching was achieved for 528 patients (264 patients who underwent a VS procedure and 264 patients who underwent TAP). Among this study cohort, 307 individuals (58.1%) were men. The median (interquartile range [IQR]) follow-up was 16.0 (8.1-25.4) years, for a total of 8881 patient-years, including 63 individuals (11.9%) followed up for more than 30 years. Individuals who received a VS procedure had an increased 30-year survival of 99.1% compared with 90.4% for individuals who received TAP (hazard ratio [HR], 0.09 [95% CI, 0.02-0.41]; P = .002). Patients who underwent TAP had an increased 30-year cumulative mean number of cardiovascular interventions compared with patients who underwent a VS procedure without residual pulmonary stenosis (2.0 interventions [95% CI, 1.5-2.7 interventions] vs 0.7 interventions [95% CI, 0.5-1.1 interventions]; mean ratio [MR], 0.36 [95% CI, 0.25-0.50]; P < .001) and patients who underwent a VS procedure with at least moderate residual stenosis (1.3 interventions [95% CI, 0.9-1.9 interventions]; MR, 0.65 [0.45-0.93]; P = .02). Results were similar for PVR, with a 30-year cumulative mean 0.3 PVRs [95% CI, 0.1-0.7 PVRs] for patients who underwent a VS procedure without residual pulmonary stenosis (MR, 0.22 [95% CI, 0.12-0.43]; P < .001) and 0.6 PVRs (95% CI, 0.2-1.5 PVRs) for patients with at least moderate residual stenosis (MR, 0.44 [95% CI, 0.21-0.93]; P = .03), compared with 1.4 PVRs (95% CI, 0.8-2.5 PVRs) for the TAP group. No statistically significant difference was found for cardiovascular hospitalizations. Conclusions and Relevance: This study found that patients who underwent a VS procedure had increased 30-year survival, fewer cardiovascular reinterventions, and fewer PVRs compared with individuals who underwent TAP, even in the presence of significant residual pulmonary stenosis. These findings suggest that it is beneficial to perform a VS procedure when possible, even in the presence of moderate residual stenosis, compared with the insertion of a TAP.

CONECT-6: a case-finding tool to identify patients with complex health needs.

BACKGROUND: Early identification of patients with chronic conditions and complex health needs in emergency departments (ED) would enable the provision of services better suited to their needs, such as case management. A case-finding tool would ultimately support ED teams to this end and could reduce the cost of services due to avoidable ED visits and hospitalizations. The aim of this study was to develop and validate a short self-administered case-finding tool in EDs to identify patients with chronic conditions and complex health needs in an adult population. METHODS: This prospective development and initial validation study of a case-finding tool was conducted in four EDs in the province of Quebec (Canada). Adult patients with chronic conditions were approached at their third or more visit to the ED within 12 months to complete a self-administered questionnaire, which included socio-demographics, a comorbidity index, the reference standard INTERMED self-assessment, and 12 questions to develop the case-finding tool. Significant variables in bivariate analysis were included in a multivariate logistic regression analysis and a backward elimination procedure was applied. A receiver operating characteristic (ROC) curve was developed to identify the most appropriate threshold score to identify patients with complex health needs. RESULTS: Two hundred ninety patients participated in the study. The multivariate analysis yielded a six-question tool, COmplex NEeds Case-finding Tool - 6 (CONECT-6), which evaluates the following variables: low perceived health; limitations due to pain; unmet needs; high self-perceived complexity; low income; and poor social support. With a threshold of two or more positive answers, the sensitivity was 90% and specificity 66%. The positive and negative predictive values were 49 and 75% respectively. CONCLUSIONS: The case-finding process is the essential characteristic of case management effectiveness. This study presents the first case-finding tool to identify adult patients with chronic conditions and complex health needs in ED.

The 30-Year Outcomes of Tetralogy of Fallot According to Native Anatomy and Genetic Conditions.

BACKGROUND: The reported survival of tetralogy of Fallot (TOF) is > 97%. Patients with pulmonary atresia and/or genetic conditions have worse outcomes, but long-term estimates of survival and morbidity for these TOF subgroups are scarce. The objective of this study was to describe the 30-year outcomes of TOF according to native anatomy and the coexistence of genetic conditions. METHODS: The TRIVIA (Tetralogy of Fallot Research for Improvement of Valve Replacement Intervention: A Bridge Across the Knowledge Gap) study is a retrospective population-based cohort including all TOF subjects born from 1980 to 2015 in Québec. We evaluated all-cause mortality by means of Cox proportional hazards regression, and cumulative mean number of cardiovascular interventions and unplanned hospitalisations with the use of marginal means/rates models. We computed 30-year estimates of outcomes according to TOF types, ie, classic TOF (cTOF) and TOF with pulmonary atresia (TOF-PA), and the presence of genetic conditions. RESULTS: We included 960 subjects. The median follow-up was 17 years (interquartile range, 8-27). Nonsyndromic cTOF subjects had a 30-year survival of 95% and had undergone a mean of 2.8 interventions and 0.5 hospitalisations per subject. In comparison, TOF-PA subjects had a lower 30-year survival of 78% and underwent a mean of 8.1 interventions, with 4 times as many hospitalisations. The presence of a genetic condition was associated with lower survival (< 85% for cTOF and < 60% for TOF-PA) but similar numbers of interventions and hospitalisations. CONCLUSIONS: The anatomic types and the presence of genetic conditions strongly influence the long-term outcomes of TOF. We provided robust 30-year estimates for key markers of prognosis that may be used to improve risk stratification and provide more informed counselling to families.