Covid-19 Pandemic: Patients' Experience in T1D

Recruitment of people with type 1 diabetes will be done via an email sent to the participants
in the BETTER registry who agreed to be contacted for other studies.

Participants of 18 years old and more will be invited to answer to the questionnaire (adult
version of the questionnaires).

If the person with diabetes is aged < 18 years old, their parents will be invited to answer
with them the survey ("parent" version of the questionnaire):

- Parents from the registry (PWT1D less than 14 y.o.) will receive the invitation email

- Participants of 14 to 18 years old who self-registered to the BETTER registry will
receive an invitation email. They will be invited to complete the questionnaire with
their parents. They will only have access to the "parent" version of questionnaire.

Advertising may be done through publicity on BETTER's social media (ie., Facebook,
Instagram), via the BETTER monthly newsletter to increase awareness toward this research
project. However the link to start the study will only be available in the email sent to the
registry participants.

If people with type 1 diabetes not registered in BETTER want to participate in the present
study, they will be instructed to self-register first to the registry and they will then
receive a specific email to participate in the current study.

Data collection:

This will be a short online survey completed through an electronic software platform from
Research Electronic Data Capture (REDCap) clinical software (English or French). The first
question of the survey will be the consent form. Participants will be invited to answer the
other questions only after having read the consent form and selecting 'Agree'. The consent
form will also be available as a PDF document for download. The investigators have used this
method in the past for the BETTER registry study. Participants will then confirm their
eligibility.

The survey will include questions on acute complication (severe hypoglycemia and diabetic
ketoacidosis); hypoglycemia frequency; hyperglycemia; ability to get diabetes supplies and to
access diabetes care; impact of the pandemic situation on daily life activities (e.g., food
insecurity, physical activity); impact on stress, anxiety and depression. The investigators
will use the PHQ-9 scale for depression screening and the GAD7 scale for generalized anxiety
among adult participants. The investigators will use the Short Mood and Feelings
Questionnaire (SMFQ) for child and adolescent. The version used is the own that has been
adapted to be completed by parents . The SMFQ was developed for use in epidemiological
studies of depression in children and adolescents.

If participants show a certain level of distress, as reflected by the PHQ9 questionnaire
score (≥ 10) or the SMFQ score (≥ 8), they will receive an automated email with resources
that they can contact.

For PWT1D, socio-demographic information (e.g., age, ethnicity and education) and diabetes
history (e.g., diabetes duration, complications) will be retrieved from the BETTER registry.
Data from the registry and from this specific questionnaire will be linked using 3
identification information: the email address, the date of birth and the sex. The
investigators have used this methodology for the SUPPORT study.

Analysis: The investigators will use demographic information already available on the BETTER
registry. This will be a descriptive analysis. Continuous data will be reported as means with
standard deviations (median and interquartile range if data are skewed). Categorical data
will be reported as proportions. The investigators will do regression analysis to explore the
effect of the COVID-19 pandemic duration on the patients' experience.

Thematic analysis will be performed for the free text. Content will be coded and concepts
will be categorized into different themes by two researchers.

Sample size:

Based on an estimated number of 70 000 PWT1D in Quebec, a sample size of 384 completed
questionnaire was calculated with an error margin of 5%, a confidence interval of 95% and a
distribution of answers of 50%, A 50% distribution was used because it is impossible to
predict answers; this proportion corresponds to the scenario with the larger sample size
needed. Sample size was calculated using Raosoft.

Importance of this study: This study will inform about the major issues experienced by
patients living with diabetes. The anxiety and added stress may lead to dysregulated blood
sugars and deteriorations in their physical and mental well-being. Accesses to health care
services are limited. This study will inform on the support needed by patients with type 1
diabetes during this pandemic to avoid or limit negative consequences. This may help to
advocate for more remotely accessible resources for patients.