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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.

Family Involvement Interventions on Fear of Cancer Recurrence Management Among Women With Breast Cancer and Their Caregivers: A Systematic Review and Meta‐Analysis

ABSTRACT

Background

Family strengths can be used to help families adapt to hardship and strain. However, meta-analytic evidence of the effectiveness of family involvement interventions on fear of cancer recurrence (FCR) in women with breast cancer and their caregivers is lacking.

Objective

To evaluate the effectiveness of family involvement interventions on FCR in women with breast cancer and their caregivers and to identify the characteristics of effective family involvement interventions.

Method

Ten electronic databases were searched from database inception to October 2023. The updated Cochrane risk-of-bias tool was used to assess the quality of the included randomised controlled trials (RCTs). Data analyses were executed with Revman 5.3 software, and subgroup analyses were performed on the basis of interventional dosage. The Preferred Reporting Items for Systematic Reviews and Meta-Analysis 2020 checklist was employed to provide guidance.

Results

Seven studies were included in the review, and six were included in the meta-analysis. The main contents included content related to the disclosure of disease-related feelings/worries/concerns/experiences, education/psychological support plus some disclosure and education/counselling based on disclosure content. The results of the meta-analysis showed that family involvement interventions have large short-term positive effects on relieving FCR in women with breast cancer. The pooled results of subgroup analysis demonstrated that compared with usual care, education/psychological support plus some disclosure is ineffective, and disclosure alone has a moderate-to-large effect size, whereas disclosure with education or counselling targeting the specific needs of participants has an extremely large effect size. Only one study focused on FCR in caregivers, with an unfavourable result.

Conclusions

Family involvement interventions, especially those using disclosure combined with education or counselling targeting their specific needs, have considerable short-term effects on women's FCR alleviation. However, the evidence in caregivers is insufficient. Only a few interventional studies targeting patients and caregivers exist. Further high-quality RCTs with follow-ups are encouraged.

Patient and Public Contribution

No patient or public contribution.

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.

Fear of Cancer Recurrence Prevalence and Its Associated Factors Among Family Caregivers of Women With Breast Cancer: A Systematic Review and Meta‐Analysis

ABSTRACT

Background

The fear of cancer recurrence (FCR) levels reported by caregivers are as high as those reported by women with breast cancer, with some caregivers even reporting FCR levels higher than women with breast cancer. The recognition of factors associated with caregiver FCR is important for providing proactive support to caregivers at risk.

Objective

To identify factors associated with high FCR in caregivers of women with breast cancer.

Methods

A systematic search of eight electronic databases was conducted from database inception to August 2023. The identified papers were screened, and their full texts were further assessed. The quality of the included studies was examined by using a checklist, and relevant data were extracted with a predeveloped data extraction form. The best-evidence synthesis model was used for data synthesis. Meta-analysis was conducted to calculate the prevalence of caregiver FCR.

Results

The search yielded a total of 2137 studies, and 15 studies involving 2461 caregivers were included after the screening and full assessment of 56 papers. A total of 29 factors were identified. Of these factors, five factors with a moderate level of evidence associated with high FCR were identified: insufficient communication of women with breast cancer, low level of resilience, high social constraints, high protective buffering and insufficient communication of caregivers; 15 associated factors were supported by limited-level evidence and nine were supported by conflicting-level evidence. The prevalence of FCR in caregivers was 45%.

Conclusions

The associated factors examined provide some evidence for identifying caregivers who are at high risk of high FCR. Identifying factors contributing to FCR in caregivers is important for developing interventions for those caregivers most in need and reducing adverse health outcomes related to caregiver FCR. Additional studies are needed to examine the relationship between conflicting factors and caregiver FCR.

Patient or Public Contribution

No patient or public contribution.

Trial Registration: PROSPERO registration number: CRD42023469754; identifier: https://www.crd.york.ac.uk/PROSPERO/#recordDetails

Effect of a Nurse‐Led Support Program Using Mobile Application Versus Nurse Phone Advice on Patients at Risk of Coronary Artery Disease: A Randomized Controlled Trial

ABSTRACT

Background

Coronary artery disease (CAD) is a major health problem of atherosclerotic cardiovascular (CV) disease and early intervention is regarded important. Given the proven effect of a lifestyle intervention with nursing telephone counselling and mHealth use in health care, yet the comparisons of both support are lacking, this study is proposed.

Objectives

This study aimed to compare the effects of a coronary artery disease (CAD) support program using a mobile application versus nurse phone advice on exercise amount and physical and psychological outcomes for clients at risk of CAD.

Methods

A prospective randomized controlled trial was conducted. Ethical approval was obtained. Two-hundred and twenty-six clients were screened, and a total of 168 clients who were at risk of CAD and routinely used smartphones were randomized into the app support group (App group) or the nurse phone advice (NPA) group. Although all participants received the same health talk delivered by a cardiac nurse at the community center, the App group received additional CAD app support, whereas the NPA group received nurse phone advice for 20 min monthly. The app content comprised (1) CAD knowledge in 10 modules, (2) individual exercise records with their own goals and health measures, and (3) a chest pain action list. The intervention lasted for 3 months. Health outcome data were collected at baseline (T0) and after 1 (T1) and 3 (T2) months. The outcomes were the total amount of exercise (primary outcome), self-efficacy in illness management, perceived stress, and CAD risk profile (body weight, body mass index, and lipid concentration). Generalized estimating equation models were used to assess differential changes in all outcomes within 3 months.

Results

The attrition rates at 3 months were 3.49% and 9.30% for the App and NPA groups, respectively. The App support group was superior to the NPA group in significantly increasing total exercise amount and reducing body weight, waist circumference, triglycerides, and increased self-efficacy in illness management.

Linking Evidence to Action

The result provides further insights of app development to support health promotion programs for community-dwelling adults at risk of CAD.

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