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

Abstract

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.

Keywords: general diabetes; paediatric endocrinology; protocols & guidelines.

Figure 1

Adjusted predictions of covariates on probability of distancing visits the y-axis of each graphic represents the probability of preferring to distance visits over 3 months the x-axis of each graphic represents a covariate (included in the regression models): number of years since the T1D was diagnosed, direct cost to attend appointments, use of insulin pump, helpfulness of information provided during the appointment, having made a change in their professional life (such as leaving a position for one that is more flexible or changing to part-time work), region where the family leaves, number of children in the family. T1D, type 1 diabetes.

Figure 2

Adjusted predictions of covariates on probability of distancing visits. The y-axis of each graphical represents the probability of preferring to distance visits over 3 months the x-axis of each graphic represents a covariate (included in the regression models): number of years since the T1D was diagnosed, direct cost to attend appointments, use of insulin pump, helpfulness of information provided during the appointment, having made a change in their professional life (such as leaving a position for one that is more flexible or changing to part-time work), region where the family leaves, number of children in the family. T1D, type 1 diabetes.