Type 1 diabetes (T1D) is one of the most prevalent chronic diseases in childhood and adolescence. Of the 490000 children living with T1D, 24% reside in the European Region.1 Furthermore, its incidence continues to increase,1,2 and it is estimated that approximately 78000 children aged less than 15 years develop the disease each year worldwide.3,4 In Spain, an incidence rate of 17.69 cases/100000 inhabitants/year has been reported in children aged less than 15 years.5 In the Autonomous Community of Extremadura, the most recent studies show even higher figures of up to 25.2 cases/100000 inhabitants.6,7

Type 1 diabetes is a disease that requires immediate care and lifelong treatment after diagnosis. Its daily management requires the whole household to adapt to a new way of life, as it requires frequent monitoring of blood glucose levels, keeping track of carbohydrate intake and continuously adjusting insulin doses according to the physical activity and diet of the patient.8 Thus, it would be very difficult for children to follow recommendations for the management of diabetes without appropriate support from their families, who need to be educated on how to care from the patient at the outset.9

One of the greatest challenges faced by schoolchildren with T1D and their families is how to manage the disease at school, as young children in preschool and primary school have yet to develop the skills required to adequately manage their diabetes on their own.10 Schoolchildren spend approximately one third of the day in the school, so it is essential for them to have access to adequate care11 in order to participate in all the school activities and have the same opportunities as all other students.12 Appropriate school-based diabetes care is necessary to guarantee the immediate safety of students with T1D, their long-term wellbeing and an adequate academic performance.13

In 2011, a Protocol for the Care of Children and Adolescents with Diabetes in Schools was introduced in Extremadura (currently integrated in the Protocol for the Management of Medical Emergencies in Schools of Extremadura14), leading to significant advances in the monitoring, safety and equality of opportunities of students with T1D. It is the responsibility of families to inform the school about the protocol, at which point a personalised care plan starts to be implemented. The referring nurse, who usually belongs to a primary care team, is responsible for providing basic training on diabetes in schools, educating teachers on how to respond to an emergency and overseeing the personalised care plan.14 In 2014, the coverage of this protocol had reached 67.7%15 and it has continued to increase, reaching 74% in 2016 (data not published).

The aim of our study was to establish the current needs of schoolchildren with T1D in Extremadura from preschool through age 6 years based on the information provided by their families, with the purpose of identifying opportunities for improvement in the care and seamless integration of this population in the school setting.

We conducted a cross-sectional, observational and descriptive study based on the information and opinions given by the families of students with T1D aged 3–16 years enrolled in schools in Extremadura.

The universe of the study consisted of 362 children with T1D with files in the health record database of the public health system of Extremadura (Servicio Extremeño de Salud).

We collected information using a questionnaire specifically designed for the purpose (Appendix B), which we developed taking into account previous research15–19 and was reviewed by a panel of experts. We carried out a pilot study to ascertain the understanding of the items of the questionnaire and analyse its internal consistency (Cronbach α, 0.772). We mailed the questionnaires by certified post, including an envelope with prepaid postage for its submission and a letter to inform the recipient about the study.

We entered the submitted data in a database and analysed them using the software IBM® SPSS® Statistics version 25 for Windows®. We have summarised qualitative variables as absolute and relative frequencies and compared them by means of the Pearson chi-square test. We defined statistical significance as a P-value of less than .05.

We submitted 362 questionnaires and received 206 responses (response rate, 56.9%); when it came to the distribution among the 8 administrative health areas of Extremadura, participation was highest in Plasencia (75.9%) and lowest in Badajoz (48.2%). In 1.9% of responses, the participant had not specified the health area to which they belonged (Table 1).

Questionnaires were completed by the mother (78.6%), father (18%) or legal guardian (1.5%) of the child. Table 2 presents the sociodemographic and clinical characteristics of the schoolchildren included in the sample.

In this study, we assessed the needs related to type 1 diabetes of schoolchildren in Extremadura by obtaining information from their families. This is the first study conducted on the subject at the autonomous community level in Extremadura, where, due to special characteristics such as the high regional incidence of diabetes and the amount of the population that resides in rural areas and their geographical dispersion, it is particularly important to continue advancing the full normalising and integration of these schoolchildren.

The study reflected the widespread use of continuous subcutaneous insulin infusion (CSII) in Extremadura (amounting to one third of schoolchildren with T1D), an approach that achieves better glycaemic control and reduces the risk of hypoglycaemia16,17 and the costs associated with episodes of severe hypoglycaemia.18 This proportion nears the proportion achieved in other European countries19 and is above the national average in Spain based on the reports of the Federación Española de Empresas de Tecnología Sanitaria (Spanish Federation of Businesses in Health Care Technology [FENIN]), which found that CSII was used in 4% of patients in Spain in 2012 (unpublished data), and on studies conducted in other autonomous communities.20,21

Diabetes has an impact on the family routine, and half of parents/legal guardians had to make adjustments to their work schedule, a proportion similar to the one found in the nationwide study by Beléndez and Lorente,22 although in our study this occurred more frequently in parents or guardians of children aged 6–9 years and less frequently in those of children aged less than 6 years. This may be related to schooling not being mandated by law in the younger age group, an issue that we did not explore but that should be taken into consideration in future studies. Few families (7.7%) reported a poorer adjustment to school life after diagnosis, consistently with other nationwide studies.23 Most families sought the information they need about diabetes from health care professionals, and in nearly every case the schoolchildren received education on diabetes in paediatric clinics, as recommended by the American Diabetes Association.10 Few families (18%) sought to reinforce diabetes education in the summer programmes organised by associations of patients with diabetes, even though more than half of the sample belonged to one of these associations.

Overall, schoolchildren with T1D exhibited an ability to self-manage the disease that was considered age-appropriate based on current recommendations10 and exceeding the skills found in other studies.24–26 The biggest challenge involves schoolchildren aged 3–9 years, who are totally or partially dependent on adults for management, especially when it comes to the injection of insulin, which requires more training and collaboration on the part of the school staff.

At any rate, regardless of the responsibility that each child takes on in self-management, supervision and support from a properly trained adult is still always recommended in case an emergency arises.10 However, we found that families were unsure whether teaching staff, including the physical education teachers, were trained to identify and manage hypoglycaemia. This is a key issue considering that 2 out of 3 schoolchildren with T1D had suffered episodes of hypoglycaemia during school hours and half during physical education activities. Most families considered that further education and training of the teaching staff is required in relation to all the above aspects. This issue may be at the heart of the reason why children with T1D are less likely to join in extracurricular activities lasting longer than 1 day, which may have a negative impact on normalising and integration in school. The fact that 3 out of 10 families were unaware of the protocol for the coordination of diabetes management in school settings, a finding that was consistent with the reported coverage of the protocol, could mean that, by not being put into action, teachers are less prepared and the schools have fewer resources for the management of emergencies related to diabetes. However, based on the information we obtained from the families, we did not find an association between these 2 variables. This aspect is an important area for improvement in the implementation of protocols, as the coordination of the family, the health care team and the school can guarantee a safer learning environment through the joint implementation of care plans.

While most form tutors had been made aware of the diabetes of the schoolchildren in our sample, 4 out of 10 respondents reported that the rest of the teachers and the classmates were not informed about it, contrary to the findings of the study carried out by Beléndez and Lorente,22 in which classmates of children with diabetes knew they had this disease in 91% of cases. This low level of awareness could have a negative impact on the integration with peers and normalising of children with T1D and in the successful management of episodes of hypoglycaemia.

In conclusion, this study shows that despite the progress made with the implementation of protocols to coordinate families, teachers and health care workers to advance integration and normalising in schoolchildren with T1D, there are still opportunities for improvement that ought to be explored and implemented.

First of all, it is essential that adherence to protocols increases, which could be facilitated by including the protocol in the health records as part of the treatment plan of schoolchildren with T1D and setting up a system for the communication of health care and school administrators that would allow the detection of cases of non-adherence.

In addition, it would be helpful to develop a mandatory training programme for the school setting to guarantee basic knowledge and skills on diabetes that would include the student body and the development of more advanced skills in the teachers in charge of students with diabetes on the identification and management of emergencies related to the disease. This programme should be developed by the school nurse/point of contact and supported by the paediatrics teams that manage the schoolchildren. The use of emerging technologies in the school and health care environments could support the continuing education and communication between all individuals that interact with children with T1D. Advances in health care safety in schoolchildren with T1D will unquestionably contribute to their full integration and improve academic performance, as well as reassure their families.

The authors have no conflicts of interest to declare.