Parents' preferences for follow-up care in a type 1 diabetes paediatric population: a survey-based study in Quebec, Canada

Objectives Examine variations in parent's preferences for their child's type 1 diabetes (T1D) follow-up care and the determinants of the preferred intensity of care. Clinical guidelines recommend multidisciplinary management of T1D, with follow-up visits with an endocrinologist at least every 3 months in the paediatric population. However, there could be heterogeneity in parents' needs, and preferences in terms of care management may deviate from clinical guidelines. Setting Not applicable. Participants Parents who have a child living with T1D and who reside in Quebec, Canada. Intervention In collaboration with a patient-partner (a parent of a child with T1D), we developed a survey to collect data from parents of children living with T1D. Our primary outcome of interest was the preferred time in months between two appointments. We ran a probit model to analyse longer time (over 3 months between appointments), compared with the standard of care (3 months or less). Results Results suggest that about one-third (33%) of parents want to deviate from the guideline. Parents who want to increase the time between appointments are more experienced in the management of the disease and have higher costs than those who wish to follow the 3-month guideline. The number of years since the diagnosis is positively associated with a preference for a longer time between appointments, while the perceived useful of information provided during the consultation, and a parent having made a change in their professional life were negatively associated with a desire to space out appointments. The child's gender is not a significant factor in parents' preferences. Conclusions Adapting visit protocols could make the health system more efficient to respond to T1D patients and their parent's needs.

Automated summary

The study found that about one-third of parents of children with T1D prefer a deviation from clinical guidelines in their follow-up care. Parents who wish to extend the time between appointments tend to have more experience in managing the disease and higher costs. The number of years since diagnosis is positively correlated with a preference for longer intervals between appointments, while the perceived usefulness of information provided and changes in a parent's professional life are negatively associated with a desire for less frequent appointments. The child's gender did not significantly impact parents' preferences.