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Parents' preferences for follow-up care in a type 1 diabetes paediatric population: a survey-based study in Quebec,
Maude Laberge1,2, Monia Rekik3, Kodjo Mawuegnigan Djiffa3
1Operations and Decision Systems, Universite Laval Faculte des sciences de l'administration, Quebec, Quebec, Canada maude.laberge@fsa.ulaval.ca.
Insights
Many parents of children with type 1 diabetes (T1D) prefer longer intervals between endocrinology appointments than guidelines suggest. Parental experience with T1D management influences preferences for follow-up care intensity.
Area of Science:
- Pediatric Endocrinology
- Health Services Research
- Patient-Centered Care
Background:
- Clinical guidelines recommend quarterly endocrinology follow-up for pediatric type 1 diabetes (T1D) management.
- Parental preferences for T1D care intensity may vary and potentially deviate from established guidelines.
- Understanding these preferences is crucial for optimizing patient and family-centered care delivery.
Purpose of the Study:
- To investigate parental preferences regarding the frequency of follow-up appointments for their children with T1D.
- To identify factors influencing parents' desired intensity of T1D care.
- To explore potential deviations from standard 3-month follow-up intervals.
Main Methods:
- A survey was developed in collaboration with a patient-partner to gather data from parents of children with T1D in Quebec, Canada.
- The primary outcome measured was the preferred time interval (in months) between appointments.
- A probit model was used to analyze preferences for longer intervals (over 3 months) versus standard care (≤3 months).
Main Results:
- Approximately one-third (33%) of parents expressed a desire to extend the time between appointments beyond the recommended 3 months.
- Increased parental experience in managing T1D and higher perceived costs were associated with preferring longer intervals.
- Longer duration since diagnosis correlated positively with a preference for spaced-out appointments, while perceived information utility and professional life changes correlated negatively.
Conclusions:
- Parental preferences for T1D follow-up care frequency can differ from clinical guidelines.
- Factors such as disease management experience and perceived value of consultations influence these preferences.
- Tailoring visit protocols to align with patient and parent needs could enhance healthcare system efficiency for T1D care.
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.
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