Dataset Information

Online survey to assess parents' experience and preferences for follow-up visits for children living with type 1 diabetes in Quebec, Canada: a study protocol.

ABSTRACT:

Introduction

It is accepted that although patients may initiate a visit to a healthcare provider, follow-up visits are often based on recommendations from providers. This suggests that follow-up care, since not initiated by patients, may not reflect patients' perception of a need for care. However, few studies have examined the burden of regular follow-up care and patients' perceived value of such care. For parents of children with type 1 diabetes (T1D), follow-up visits are scheduled regardless of how well controlled the diabetes is. Our study examines how benefits and burden from the parents' perspective could affect their preferences in regard to the frequency of regular follow-up care.

Methods

We aim to develop an online patient survey to be distributed to parents of children living with T1D in the province of Quebec, Canada. The survey will be available in French and English, and distributed through diabetes clinics, on social media groups and forums for parents of children with T1D. The survey will be developed in collaboration with parents of children with T1D to ensure that it appropriately reflects the services in regular follow-up care and that the language is understandable and clear.

Ethics and dissemination

All participants will be informed of the requirements and objectives of the survey at the beginning of the questionnaire and that the data collected will remain anonymous and confidential. Ethics approval for the study was obtained from the research ethics committee of the CHU de Québec-Université Laval. Results of the study will be shared with relevant stakeholders with the aim of improving practices and better meeting patients' and families' needs.

SUBMITTER: Laberge M

PROVIDER: S-EPMC6797364 | biostudies-literature | 2019 Oct

REPOSITORIES: biostudies-literature

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Publications

Online survey to assess parents' experience and preferences for follow-up visits for children living with type 1 diabetes in Quebec, Canada: a study protocol.

Laberge Maude M Badreddine Malek M Rekik Monia M

BMJ open 20191007 10

<h4>Introduction</h4>It is accepted that although patients may initiate a visit to a healthcare provider, follow-up visits are often based on recommendations from providers. This suggests that follow-up care, since not initiated by patients, may not reflect patients' perception of a need for care. However, few studies have examined the burden of regular follow-up care and patients' perceived value of such care. For parents of children with type 1 diabetes (T1D), follow-up visits are scheduled re ...[more]

PMID: 31594893

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Project description:BackgroundFluoropyrimidines are used in chemotherapy combinations for multiple cancers. Deficient dihydropyrimidine dehydrogenase activity can lead to severe life-threatening toxicities. DPYD*2A polymorphism is one of the most studied variants. The study objective was to document the impact of implementing this test in routine clinical practice.MethodsWe retrospectively performed chart reviews of all patients who tested positive for a heterozygous or homozygous DPYD*2A mutation in samples obtained from patients throughout the province of Quebec, Canada.ResultsDuring a period of 17 months, 2,617 patients were tested: 25 patients tested positive. All were White. Twenty-four of the 25 patients were heterozygous (0.92%), and one was homozygous (0.038%). Data were available for 20 patients: 15 were tested upfront, whereas five were identified after severe toxicities. Of the five patients confirmed after toxicities, all had grade 4 cytopenias, 80% grade ≥3 mucositis, 20% grade 3 rash, and 20% grade 3 diarrhea. Eight patients identified with DPYD*2A mutation prior to treatment received fluoropyrimidine-based chemotherapy at reduced initial doses. The average fluoropyrimidine dose intensity during chemotherapy was 50%. No grade ≥3 toxicities were observed. DPYD*2A test results were available in an average of 6 days, causing no significant delays in treatment initiation.ConclusionUpfront genotyping before fluoropyrimidine-based treatment is feasible in clinical practice and can prevent severe toxicities and hospitalizations without delaying treatment initiation. The administration of chemotherapy at reduced doses appears to be safe in patients heterozygous for DPYD*2A.Implications for practiceFluoropyrimidines are part of chemotherapy combinations for multiple cancers. Deficient dihydropyrimidine dehydrogenase activity can lead to severe life-threatening toxicities. This retrospective analysis demonstrates that upfront genotyping of DPYD before fluoropyrimidine-based treatment is feasible in clinical practice and can prevent severe toxicities and hospitalizations without delaying treatment initiation. This approach was reported previously, but insufficient data concerning its application in real practice are available. This is likely the first reported experience of systematic DPYD genotyping all over Canada and North America as well.

Project description:BackgroundTimeliness in the administration of recommended vaccines is often evaluated using vaccine delays and provides more information regarding the susceptibility of children to vaccine-preventable diseases compared with vaccine coverage at a given age. The importance of on-time administration of vaccines scheduled at the first visit is well documented, but data are scarce about the impact of vaccine delays at other visits on vaccination status by 24 months of age. Using vaccine delays for the first three doses of DTaP-containing vaccines and for the first dose of measles-containing vaccines as markers of timeliness at the 2, 4, 6 and 12 month visits, we estimated the proportion of incomplete vaccination status by 24 months of age attributable to a vaccine delay at each of these visits.MethodsWe used the data from six cross-sectional coverage surveys conducted in the Province of Quebec from 2006 to 2016 which included 7183 children randomly selected from the universal health insurance database. A vaccine dose was considered delayed if received 30 days or more after the recommended age. The impact of new vaccine delays at each visit on incomplete vaccination status by 24 months of age was estimated with the attributable risk in the population.ResultsThe proportion of children with vaccine delay was 5.4% at 2 months, 13.3% at 4 months, 23.1% at 6 months and 23.6% at 12 months. Overall, 72.5% of all 2-year-old children with an incomplete status by 24 months were attributable with a vaccine delay, of which 16.1% were attributable with a first vaccine delay at 2 months, 10.6% at 4 months, 14.0% at 6 months and 31.8% at 12 months.ConclusionsWhile great emphasis has been put on vaccine delays at the first vaccination visit, the prevalence of vaccine delays was greater with later visits and most children with an incomplete vaccination status by 24 months had a vaccine delay occurring during these later visits. Interventions to improve timeliness should address vaccine delays at each visit and not only focus on the first visit.

Dataset Information

Online survey to assess parents' experience and preferences for follow-up visits for children living with type 1 diabetes in Quebec, Canada: a study protocol.

Introduction

Methods

Ethics and dissemination

Publications

Online survey to assess parents' experience and preferences for follow-up visits for children living with type 1 diabetes in Quebec, Canada: a study protocol.

Similar Datasets

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