Hypoglycaemia is the most common acute complication of type 1 diabetes (Ly et al, 2014). Severe hypoglycaemia involving seizures or coma occurs with an incidence of between 4.1 and 9.6 episodes per 100 person-years (Wagner et al, 2005; Katz et al, 2012). There is no universally agreed numerical value to define hypoglycaemia in people with diabetes; however, blood glucose levels under 3.3–3.9 mmol/L are generally considered to place people at risk of severe hypoglycaemia (Ly et al, 2014). Severe hypoglycaemia itself is defined in childhood as:
“An event associated with severe neuroglycopenia usually resulting in coma or seizure and requiring parenteral therapy.” (Ly et al, 2014)
The effects of hypoglycaemia on the developing brain are not clearly understood. Some studies have suggested that repeated severe hypoglycaemia may impact on cognitive function; however, results are inconsistent and in other studies no differences in neurocognitive outcomes were found (Wysocki et al, 2003; Strudwick et al, 2005; Ly et al, 2011).
In adults, the DCCT (Diabetes Control and Complications Trial Research Group, 1993) demonstrated a reduction in the risk of complications with intensive insulin therapy and improvements in HbA1c; however, such therapy resulted in a three-fold increase in the risk of severe hypoglycaemia. Similar results have been seen in children and young people (CYP), with the youngest children at greatest risk (Davis et al, 1998). As a result, hypoglycaemia has often been seen as a barrier to improving glycaemic control. Although recent evidence suggests the risk of severe hypoglycaemia associated with tighter diabetes control is falling (Karges et al, 2014), hypoglycaemia remains one of the most feared complications of type 1 diabetes, and fear of hypoglycaemia has been shown to be associated with worse diabetes control (Hawkes et al, 2014).
In the majority of episodes, hypoglycaemia is mild and can be managed with oral dextrose. However, in episodes of severe hypoglycaemia, in which there is loss of consciousness, parenteral therapy with either intravenous dextrose-containing fluids or intramuscular glucagon (particularly outwith the hospital setting) may be required (Ly et al, 2014). Recent guidance from NICE (2015) is that:
“Family members or carers and, where appropriate, school nurses and other carers should be trained and equipped to give intramuscular glucagon for severe hypoglycaemia in an emergency.”
The International Society of Paediatric and Adolescent Diabetes (Ly et al, 2014) suggests that:
“Glucagon should be readily accessible to all parents and caregivers, especially when there is a high risk of severe hypoglycemia. Education on administration of glucagon is essential.”
Within the UK, concerns have been raised by the Families with Diabetes National Network (FWDNN) about inconsistencies in the prescribing and training in the delivery of glucagon, access to glucagon at school and the practices of families in carrying glucagon outside of the home (Maiden, 2015). With this in mind, the following study was developed. Its aims were:
- To survey views of diabetes teams within the Children and Young People’s Yorkshire & Humber Diabetes Network regarding (a) current practices in the prescription of glucagon for families; and (b) training provided to families and schools.
- To survey parents’ views regarding (a) the availability of glucagon and training in its use they have received; and (b) current practice and opinions on provision of glucagon and training for others involved in the care of their children.
- To develop a gold standard for the Yorkshire & Humber Network on the provision of glucagon and training to the families and carers of CYP with type 1 diabetes.
Two separate surveys were designed by a working group consisting of both parental and professional representatives from the Yorkshire & Humber Network. Survey 1 was emailed by the network co-ordinator to each diabetes team in the network (n=18). Each team was asked to complete and return the survey over a 4-week period in the autumn of 2015. The questions asked are outlined in Box 1.
Survey 2 was to be completed by the families of CYP with type 1 diabetes within the Yorkshire & Humber Network. There were 2770 CYP (up to 19 years of age) within the network at the time of the survey. Copies of the survey were distributed to families, who were asked to complete and return a copy of the questionnaire over a 6-week period in 2015. The questions asked are outlined in Box 2.
Results were compiled and analysed by the working group, after which a gold standard was drawn-up and approved by the network after several discussions at network meetings.
Survey 1 – diabetes teams
All diabetes teams within the network (n=18) completed and returned survey 1. All teams reported teaching administration of glucagon, with 50% doing so at diagnosis. The most common methods of teaching were talking through administration (66.6% of teams) and role-play (83.3%).
All teams taught glucagon delivery to parents; additionally, 83% taught other family members, 42% taught school staff and 29% taught the child/young person.
Training was refreshed annually in 42% of teams and on request in 45.8%. Two thirds of teams said their school care plans included glucagon.
Survey 2 – families
In total, 403 surveys were returned from 2770 families across the network (response rate, 15%). The responses are illustrated in Figure 1.
The majority of families had glucagon prescribed at diagnosis and were aware that it needed replacing. Two thirds reported receiving training in administration; however, only 17% had been offered retraining.
Overall, 79% of families were aware that glucagon should be carried when away from home, and 61% did so. Of those who carried glucagon away from home, 57% reported they only carried it when away overnight.
Overall, 20% of schools had access to glucagon, with 19% (69% of those with access to glucagon) having received training in its use. The majority of families (73%) felt that glucagon should be available in schools, compared to 10% who did not.
The results of this survey highlight that there is little standardisation of practice in relation to glucagon prescribing and training across the Children and Young People’s Yorkshire & Humber Diabetes Network, with discrepancies reported among both diabetes teams and families.
Although all teams reported teaching administration of glucagon to families, only two thirds of families reported having received such training. Among these families, even fewer could recollect having had the opportunity to retrain after the first training session at the time of diagnosis, despite 42% of teams reporting that teaching was refreshed annually. Such discrepancies raise concerns about the efficacy of the current teaching methodology.
Carrying glucagon when away from home
Although the majority of families are aware that glucagon should be carried away from home, remarkably few carry glucagon with them when away, particularly for short trips. However, the percentage of families who reported carrying glucagon regularly when away from home (43%) is higher than the 21% reported in a previous survey by the FWDNN (Maiden, 2015). The need for glucagon administration is rare; however, episodes of hypoglycaemia can occur anywhere, and many families would be without an effective treatment for severe hypoglycaemia were episodes to occur away from home.
Glucagon in schools
Since 2014, there has been a statutory requirement for schools to support children with medical conditions at school. While teaching staff are not required to administer medication, they are required to know how to support children with a medical condition when they need help (Department for Education, 2014). Two thirds of teams reported that glucagon was included in school care plans but only 20% of families reported that their school had access to glucagon. A number of those schools with access to glucagon (30%) had not received training in glucagon delivery. This most probably represents schools receiving glucagon supplies to give to a paramedic or carer to administer in the case of severe hypoglycaemia, instead of schools themselves being asked to administer the drug.
It is unclear what the schools’ views of keeping and administering glucagon were; however, the FWDNN survey suggests that 10% of schools have refused to have a kit on site and 8% have refused to administer glucagon if needed (Maiden, 2015). Within Yorkshire, all Yorkshire Ambulance Service paramedic cars and ambulance crews carry a glucagon kit, and all paramedics and Emergency Medical Technicians have training in its administration. The first-line choice of treatment for the ambulance staff, however, is intravenous dextrose, with glucagon available as a back-up (personal communication). There appears to be overwhelming support from families for glucagon to be made available in schools, with 73% of families supporting availability compared to 10% who did not.
During network discussions, the diabetes team members raised concerns regarding the logistics of providing training to all schools, given the very infrequent need for glucagon administration and, hence, the difficulty in maintaining standards within school staff. A study in the US found that 75% of 185 children with diabetes required treatment for hypoglycaemia whilst at school, with a median of five episodes per student per year. However, only one of these episodes was severe, requiring administration of glucagon (Hellems and Clarke, 2007). The authors concluded that glucagon administration may be required at school for up to 3% of children with diabetes during a school year.
This study has some limitations. While there was a 100% response rate from the diabetes teams, only 15% of families returned their questionnaires. It is possible that these respondents were the families who felt most concerned about hypoglycaemia or glucagon availability/use, and that the results are thus biased to this population. In addition, whilst we have endeavoured to take into account opinions of both families and healthcare professionals, school staff were not consulted in this study.
Following this study, guidance was drafted and revised with input from the Yorkshire & Humber Network. The finished guideline, taking into account both parental and professional viewpoints, is shown in Figure 2. It concentrates on three key areas: availability of glucagon, training in its administration, and its availability and use in schools. It can be accessed at: https://is.gd/j48vnH.
It is hoped that this guidance will both improve professional practice across the network and improve the knowledge of families regarding glucagon use. The guideline also aims to provide standardised advice regarding the use and availability of glucagon in schools, which has been identified as an area of concern for families.
This survey has revealed inconsistencies in practice regarding glucagon availability and training across the Children and Young People’s Yorkshire & Humber Diabetes Network. In a number of cases, there appears to be both suboptimal practice and significant gaps in parents’ knowledge around glucagon. This work has resulted in the development of a gold standard regarding glucagon prescription and training within the network, with the aim of improving practice and knowledge.
The authors thank the members of the Children and Young People’s Yorkshire & Humber Diabetes Network for their assistance in shaping the final guideline, through completing the surveys and through feedback and discussion at network meetings. Thanks also to the patients of the network and their families for completing the surveys, which led to development of the guideline.
All four authors formed the working group, which devised the surveys, collated and analysed results, and designed the initial guideline. AN and JF presented the results and initial guideline to the network and led discussions to finalise the guideline. EF wrote the manuscript. All four authors edited and approved the manuscript prior to submission.