Setting up a specialist paediatric diabetes sports service

Participation in exercise and sport is important in maintaining the health and well-being of children and young people (CYP) with type 1 diabetes (T1D) (National Institute for Health and Care Excellence, 2016; JDRF, 2018). Exercise in CYP with T1D is shown to have beneficial effects on physical and mental health: reduction in long-term cardiovascular disease risk, reduced insulin resistance, improved blood pressure and endothelial function, reduced glycated haemoglobin (HbA_1c) plus improved fitness and sense of well-being (Zoppini et al, 2003; Miculis et al, 2010; Quirk et al, 2014). Getting CYP in general – particularly adolescents – to engage in physical activity is challenging, and research has shown that CYP with T1D tend to be more sedentary and less active compared to their non-diabetic peers (Wilkie at al, 2017). It is recognised that managing T1D and exercise is challenging; CYP and their families report obstacles that prevent them from engaging in sport (Pivovarov et al, 2015; Jabbour et al, 2016; Riddell et al, 2017). In addition to the barriers reported in the general population, surveys of CYP with T1D highlight a number of additional limitations:

• Fear of hypoglycaemia
• Worrying about under-performing when blood glucose (BG) readings are high
• Families/patients being unsure what to do with diabetes and no-one being available to give advice
• Families/CYP find it hard to have spontaneous fun/exercise due to a need for planning around diabetes.

CYP with T1D who take part in high-level and/or competitive sports may experience these concerns more frequently or severely. Such athletes train regularly – often for long periods at a time – take part in competitions and tournaments, and may travel away from home or family (Griffiths, 2018). All of these factors impact on their diabetes management strategies.

Calculating nutritional requirements in very active CYP with T1D can be very challenging (Iafusco, 2006). Paediatric diabetes healthcare professionals have to take into account the energy requirements needed for growth, basal metabolic rate and the increased demands associated with sport, training and exercise (Smart et al, 2018). Ensuring the right type and right amount of nutritional intake, for example avoiding ingestion of large quantities of fast-acting sugar to treat recurrent hypoglycaemia, can be particularly challenging for those trying to maintain their weight for weight category sports or build muscle bulk/strength for power-based sports. 

The Oxfordshire Paediatric Diabetes Service recognised that we have a number of CYP who are ‘elite sports-persons’ who perform competitively and often at regional or national level. Some reported that they were struggling with severe, frequent hypoglycaemia that was affecting their confidence in taking part in sport. A number also noted that their performance was ‘off’ when they experienced high BG levels. We wanted to offer these CYP encouragement and support in pursuing their sporting goals. They needed more than the standard exercise management advice offered during routine clinic appointments, indicating a gap in service provision and the potential need for a more dedicated service.

Planning and implementing a paediatric diabetes sports service
As part of team discussions, the Paediatric Diabetes Service identified members within the paediatric and adult diabetes services with an interest in diabetes sports management. Three individuals then formed a specialist multidisciplinary team (MDT): 

• Alistair Lumb, an adult diabetologist with a keen interest in sport outside of work and experience in looking after adult sportspeople with diabetes
• Anne Marie Frohock, a paediatric dietitian and qualified yoga instructor with an interest in sports nutrition
• Taffy Makaya, a paediatric endocrinologist and keen runner with an interest in adolescent medicine.

This MDT held focus-group discussions with other members of the diabetes service to gather ideas on the challenges facing CYP doing lots of sport. The MDT also attended the inaugural UK JDRF Performance in Exercise and Knowledge Conference in 2015 (JDRF, 2015), which provided an opportunity to interact with experts within the field of T1D sports management. Learning opportunities included lectures on the physiology of exercise in T1D, the challenges of – and strategies for – management; and focus group discussions. 

Identifying aims and objectives for the clinic
The paediatric diabetes sports clinic was developed with the aims of establishing a supportive environment within which to nurture CYP’s enthusiasm for sport and to empower families and CYP with T1D to become more independent and confident in managing the challenges of sport and diabetes. The specific objectives of the sports clinic are given in Box 1.

Clinic set-up
The specialist MDT produced specific referral criteria for the sports clinic, see Figure 1. The clinic accepts new referrals up to age 17 years. They produced a pre-clinic letter asking family members to collect information on BG levels, type of sport/training schedule, hypoglycaemic events, meals and snacks, etc, for several weeks prior to the appointment. The child/young person and their family were given a 40-minute consultation with the MDT during which the individual challenges faced by each child/young person were explored in depth. During this consultation, the MDT completed an individualised care plan with recommendations for insulin dosage before, during and after participation in sport. The CYP’s carbohydrate and/or protein intake was tailored to their specific needs, see Table 1 for an example. Copies of the sports clinic letters and plans were sent to the parents and CYP, their GP and the patient’s diabetes specialist nurse for information. The families were supplied with Anne Marie’s email address as well, in case they needed additional support or the clarification of plans. The MDT piloted the first diabetes sports clinic in 2014 and received very positive feedback and led to the establishment of a regular clinic. 

In addition to establishing a regular clinic, the MDT developed family information leaflets for children on multiple daily insulin injections and on insulin pumps, focusing on how they can manage exercise/sport (available here). Family-centred education days were established. These were targeted at sharing information with parents/carers and CYP on the physiology of exercise in T1D. Motivational speakers gave presentations at these events. The team also shared information with their peers and colleagues at national and regional training days, such as British Society for Paediatric Endocrinology and Diabetes, JDRF Discovery and National CYP Diabetes Network days.

Monitoring outcomes
Attendance and satisfaction
Over the initial 2.5-year period, a total of 20 appointments were offered for the specialist diabetes sports clinic. The attendance rate was 90%, as two individuals did not attend their appointments. The 18 families and CYP with T1D who were seen were sent questionnaires with a covering letter and self-addressed return envelope to gather feedback about their experiences. The questionnaire form was anonymised to encourage free and open responses. There were seven questions, see Box 2. The first six questions offered a choice of five responses from ‘very satisfied/strongly agreed’ to ‘very dissatisfied/strongly disagreed’. The last question had a ‘yes’ or ‘no’ response. There was also space for free text comments. 

Fourteen forms were returned, representing a 78% response rate. Of the responses:

• 86% of families were ‘very satisfied’ or ‘satisfied’ with the pre-clinic information (including details of the information that would be useful for them to collect prior to coming to the appointment)
• 100% of families were ‘very satisfied’ or ‘satisfied’ with the length of the clinic appointment (40 minutes), the knowledge of the MDT, and found the discussion in clinic useful
• 93% of families ‘strongly agreed’ or ‘agreed’ that they were able to make improvements to their child’s care using the information provided in the diabetes sports clinic. The remaining 7% ‘neither agreed nor disagreed’.
• 100% of families were very likely or likely to recommend the clinic to family or friends who had CYP with T1D.
• 93% of families believed that they would benefit from a follow-up appointment.

The free text responses were very positive, see Box 3. The feedback received was used to inform future plans for changes to the service.

Blood glucose control 
We compared the number of hypoglycaemic episodes – blood glucose <4 mmol/L, as measured by finger prick meters – in patients in the 3 months before and after attending their diabetes sports clinic appointment. (In our service, continuous glucose sensor values <4 mmol/L have to be confirmed by a finger prick check.) Data were retrieved from Diasend^® downloads, and paired data were available for 16 of the 18 patients who attended the sports clinic. There was a reduction in hypoglycaemic episodes in 10 of the 16 patients (63%), see Figure 2. Hypoglycaemic episodes were seen more frequently in patients taking part in endurance sports/activities.

Average HbA_1c prior to the clinic appointment was compared to the HbA_1c in the 3–4 months after the clinic appointment for the 17 patients we had data for, see Figure 2 and Figure 3. The results showed that, despite the reduction in hypoglycaemic episodes there was no significant rise in HbA_1c for the group, with an average pre-clinic HbA_1c of 58.3 mmol/mol (7.5%) and post-clinic HbA_1c of 60.9 mmol/mol (7.7%).

Future plans for service growth
Response from patients and families and the local NHS foundation trust has been encouraging. As a result, improvements have been made to the service. The number of clinics has been increased from two to four a year, doubling capacity. This means that the MDT now has the capacity to offer follow-up appointments to review progress, and to accept out-of-area referrals from the Thames Valley Network, which has generated extra income.

Despite improvements, there are ongoing challenges faced by the service. The MDT has been approached by other healthcare professionals from the region who would like to join us and sit in during clinics as a learning opportunity, but this has not been possible so far due to limited space. There are also issues around the provision of funding to cover staff education and training. Staff members have made adjustments to their job plans to account for this new service. Negotiating this in the absence of substantial extra income can be challenging, which is why it is important to have the support of the extended team. 

Discussion
It is important within clinical practice to identify areas of need or areas for potential growth. The Paediatric Diabetes Service and MDT has recognised the importance of empowering families and CYP with T1D who are actively engaged in high levels of sport and training by providing targeted education in a number of areas, such as:

• The effects of different forms of exercise, such as aerobic versus anaerobic exercise, resistance versus cardiovascular workouts, endurance versus high-intensity workouts, on the body of the CYP with T1D and his/her BG readings
• Strategies for preventing sports-related hypoglycaemia
• Preventing/minimising high BG, which can have a negative impact on concentration, coordination and decision-making – all critical skills when taking part in sport at a high level
• Balancing the nutritional and metabolic requirements of growth, diabetes and exercise.

This level of input and education is difficult to provide within a general diabetes clinic setting. By establishing a separate sports clinic, the MDT is able to focus on sport and provide specific teaching and expertise to meet the needs of participating CYPs and their families. There have been very positive results from this initiative, including excellent user uptake, reduction in hypoglycaemic episodes, and increased confidence in self-management of diabetes around sport and exercise. These results led to the Oxfordshire Diabetes Sports Service receiving a commendation award at the 2016 National Quality in Care Awards, in the category for Diabetes Team Initiative of the Year. 

Conclusion
Sport and exercise in CYP T1D have recognised benefits but several barriers exist. A service gap for a dedicated paediatric diabetes sports service was identified and a specialist, MDT approach to managing sports and diabetes instigated that has resulted in improved outcome measures. This clinic can serve as a reference for other centres setting up a similar, specialist service.

Establishing a new service can be time-consuming and logistically challenging; however, with dedication and commitment it is possible. It is important to have a clear plan, aims and a strategy for implementing the proposed service. It is also recommended practice to audit work and actively seek feedback. The authors believe in sharing practice and ideas to encourage the growth of services within other teams. 

Acknowledgements: The authors would like to thank Dr Andrew Marshall for providing advice on statistical analysis and the members of the Oxfordshire Children’s Diabetes Service for their support with running the Sports Service.