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AnteayerBMJ Open

A whole new ball game: a retrospective cohort study using healthcare administrative data to uncover predictors of timely transition from paediatric to adult type 1 diabetes care in British Columbia, Canada

Por: Leung · J. M. W. S. · Chen · L. · Zhang · Q. · Bone · J. N. · Amed · S.
Objectives

To assess predictors of timely transition to adult diabetes care among individuals diagnosed with type 1 diabetes during childhood and adolescence. We hypothesised that older age at the last paediatric visit and urban residency would be predictors of timely transition.

Design

Retrospective cohort study using healthcare administrative data in a jurisdiction with a universal healthcare system.

Participants

2045 adolescents and young adults diagnosed with type 1 diabetes between the ages of 0.5 and 18 years.

Primary and secondary outcome measures

We ascertained age at the last paediatric diabetes visit (LPDV), age at the first adult diabetes visit (FADV) and transition duration, defined as the time between LPDV and FADV. Timely transition was defined as a transition duration of

Results

Only 31.3% of individuals saw an adult provider within 1 year of their LPDV. Each 1-year increase in the age at LPDV was associated with increased odds of timely transition (adjusted OR 1.82, 95% CI 1.71 to 1.93, p0.05).

Conclusions

Older age at the LPDV and urban residency are associated with increased odds of timely transition. Interventions should be developed to help keep adolescents engaged in paediatric care until an older age before referring them to adult diabetes care. Limitations of this study include unmeasured confounding and limited generalisability to non-universal healthcare systems.

Developing and studying an outcome-focused measure of mental healthcare quality based on patient-reported symptoms in the USA: a study protocol

Por: Young · A. S. · Cai · L. · Jackson · N. J. · Leung · L. B. · Thames · A. D.
Introduction

Various psychological, cognitive, behavioural, medication and neurostimulation treatments can improve the outcomes of people with depressive and anxiety disorders. However, in usual practice, there is large variability in treatment delivery and treatments are poorly characterised. The effectiveness and quality of mental health services in the community are not accurately monitored and are poorly understood. At present, healthcare organisations, payers and policy makers know little about the quality of care they support. Similarly, patients and families have limited information on quality to guide choice of provider or organisation. It will be necessary to implement monitoring of treatment quality so that treatment and outcomes can be improved. This study develops, tests and validates a new, transdiagnostic outcome-focused mental health quality measure. This measure is based on routine, regular patient reports of their symptoms. It is designed to be aggregated at the provider, clinic, organisation or plan level; inform choice of provider; and be used to improve routine delivery of services and quality of care among patients with common psychiatric disorders.

Methods and analysis

The project analyses existing data with responses to a wide variety of items that are known to assess depression or anxiety and empirically selects symptom items for a transdiagnostic outcome-focused quality measure. The project informs risk adjustment and benchmarking of the quality measure by studying how patient, provider and practice factors, including health-related social needs, baseline symptom severity and diagnoses, affect outcomes. Drawing on these, the project specifies an outcome-focused quality measure that includes risk adjustment and benchmarks for improvement; and studies, at practices nationally, its feasibility and psychometric properties, the effect of treatment characteristics on the quality of care, and the effect of quality on health-related quality of life.

Ethics and dissemination

Results will be published. The quality measure is designed to be broadly relevant across community settings and populations and to be submitted for endorsement by regulatory and governing bodies.

Genomic testing for bleeding disorders (GT4BD): protocol for a randomised controlled trial evaluating the introduction of whole genome sequencing early in the diagnostic pathway for patients with inherited bleeding disorders as compared with standard of c

Por: Chaigneau · M. · Bowman · M. · Grabell · J. · Conboy · M. · Johnson · A. · Thorpe · K. · Guerin · A. · Dinchong · R. · Paterson · A. · Good · D. · Mahar · A. · Callum · J. · Wheaton · L. · Leung · J. · Khalife · R. · Sholzberg · M. · Lillicrap · D. · James · P. D.
Introduction

The current diagnostic pathway for patients with a suspected inherited bleeding disorder is long, costly, resource intensive, emotionally draining for patients and often futile, as half of patients will remain without a diagnosis and be labelled ‘bleeding disorder of unknown cause’. Advances in understanding the genetic basis of the inherited bleeding disorders, coupled with both increasing infrastructure for genetic/genomic testing and decreasing costs, have increased the feasibility of introducing genomic testing into the clinical diagnostic pathway as a potential solution to improve the care of these patients. Yet, there remain evidence gaps on the optimal integration of genomic analysis into the diagnostic pathway.

Methods and analysis

Using a multicentre randomised-controlled trial design, we will evaluate an early genomic testing strategy for the diagnosis of newly referred patients with a suspected inherited bleeding disorder. Eligible participants will be randomised to early genomic testing diagnostic pathway (intervention) or standard diagnostic pathway (control) and will be followed for a 12-month period. Patients in the control group who remain undiagnosed at study end will be offered identical early genomic testing to ensure equitable access to the intervention. The study will follow a parallel fixed design with waitlist control group and a 1:1 allocation ratio. The study will be conducted at three tertiary care centres in Ontario, Canada, with a target sample size of 212 participants. Clinical utility will be evaluated via the primary outcome of diagnostic yield, as well as the secondary outcome of time to diagnosis. Additional secondary outcomes will allow for assessment of patient impact via health-related quality of life and patient burden measures, as well as evaluation of economic impact through a cost-effectiveness analysis and budget impact analysis.

Ethics and dissemination

This investigator-initiated study was approved by the Queen’s University Health Sciences and Affiliated Teaching Hospitals Research Ethics Board through Clinical Trials Ontario (CTO-4909). Participant informed consent/assent is required. Findings will be disseminated through academic publications.

Trial registration number

ClinicalTrials.gov, NCT06736158.

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