Symptom awareness: Why we must do our bit to ensure earliest possible diagnosis

This week in our clinic, we saw yet another child attend with diabetic ketoacidosis as a first presentation of type 1 diabetes. Sadly, recent evidence suggests that the incidence of type 1 diabetes in children is rising and may double by 2020 (Royal College of Paediatrics and Child Health, 2014). It is vital, therefore, that we educate parents about the signs and symptoms to ensure the earliest possible diagnosis.

Raising awareness
Diabetes UK’s “4Ts” campaign was designed to increase awareness of diabetes symptoms; “Toilet”, “Tired”, “Thirsty” and “Thinner”. A survey of 1088 parents found that the campaign successfully increased symptom awareness from 9% in 2012 to 15% in 2014. These new figures show, however, that there is still a long way to go before all parents understand what to look out for in their children (Diabetes UK, 2014).

The campaign aims to reduce the high proportion of children who become seriously ill because they are not diagnosed early enough. It is thought this happens in about a quarter of cases because parents do not associate their child’s symptoms with type 1 diabetes. Unfortunately, this is also sometimes true of our fellow healthcare professionals, who do not always “think diabetes” in young children and, in some cases, children have been sent away with antibiotics or are told “to wait and see” (Diabetes UK, 2014). Diabetes UK Chief Executive, Barbara Young said:

“It is vital that parents have the confidence to politely insist that their child gets a test for type 1 diabetes from their GP if they suspect their child may have the condition.”

As paediatric diabetes nurses, we have an important role to play in ensuring the Diabetes 4Ts campaign messages reach as many parents as possible. We can actively support the campaign by ensuring that we ask all the schools we visit to display the 4Ts posters during our staff training sessions. For more information on the 4Ts campaign, go to www.diabetes.org.uk/the4Ts.

Early diagnosis
It is important that young people are diagnosed earlier to help preserve beta cell function. Interestingly, a recent study by Davis et al (2013) demonstrated that 1 in 3 people with diabetes who took part in their study had residual beta cell function even 40 years after diagnosis. Among the participants with a 3–5 year disease duration, C-peptide was present in 78% of those diagnosed after age 18, and in 46% of those diagnosed before age 18 years old.

Intensive therapy for type 1 diabetes helps sustain endogenous insulin secretion, which, in turn, is associated with better metabolic control and lower risk for hypoglycaemia and chronic complications. These observations underscore the importance of initiating intensive diabetic management as early as safely possible after type 1 diabetes is diagnosed (The Diabetes Control and Complications Trial Research Group, 1998). And, to enable the best possible outcomes, we need to strive to diagnose children and young people as early as possible.

Patient engagement in clinical care
Patient and public engagement has been on the NHS agenda for many years, but the impact has been disappointing. There have been many public consultations, surveys and one-off initiatives, but the service is still not sufficiently patient-centred. In particular, there has been a lack of focus around engaging people with diabetes in their own clinical care, despite strong evidence that this could make a real difference to health outcomes (Coulter, 2012).

In this month’s section, there are two different examples of patient engagement. The diabetes team at Tayside Children’s Hospital have developed a novel video-based intervention to enhance the communication skills between the young people and their healthcare team. Effective communication and agreement of shared goals is a key component in achieving improvement in glycaemic control. The article describes in detail the feasibility of using the tool and demonstrated improved engagement among the young people who took part.

The second article has been co-written by the young person with diabetes. It outlines how she was successfully able to fully participate in a month-long adventure holiday arranged by her school. The trip involved participating in local projects in remote conditions and the young woman was able to gain her PADI diving certificate. The article demonstrates how effective planning and, importantly, patient-centred care allowed the young person to enjoy the holiday with little disruption.