An Early-Stage Type 1 Diabetes (T1D) Clinic aims to revolutionise diabetes care and support families navigating the beginning of an early-stage T1D diagnosis.
The clinic, an Australian-first co-designed model of care for early-stage T1D, is the result of a collaboration between WA families, The Kids Rio Tinto Children’s Diabetes Centre and the Child and Adolescent Health Services’ (CAHS) Diabetes department at Perth Children’s Hospital.
Thanks to the generous support of West Australians, funding from the Channel 7 Telethon Trust, Rio Tinto and Breakthrough T1D enabled the team to develop a much-needed new model of care. By working with WA kids and their families, the team were able to better understand what support and education they needed to help manage the early-stage T1D journey.
T1D is one of the most common chronic conditions in children. In Western Australia, there are more than 1200 children living with T1D and about 150 children are newly diagnosed with T1D every year.
Dr Haynes, who leads the epidemiology and early-stage T1D research at the Rio Tinto Children’s Diabetes Centre, said research advances in the field – such as T1D screening programs – meant children could now be identified early in their T1D journey, before they had any symptoms or signs when they are likely still feeling well.
“Identifying the early stages of T1D can occur months to years before kids become unwell and need to start insulin treatment. As research advances continue, such children may be able to be offered future treatments to slow the progression and delay the need for daily insulin treatment,” Dr Haynes said.
“While some families want to know whether their child has early-stage T1D so that they can prepare and be informed of research or clinical trials available for early intervention, this news can be difficult for many families to come to terms with. Families need to have resources and support available to provide them with advice on what their results mean for them and their child.”
Currently children identified with early-stage T1D, and their families, live with the knowledge that they have a high chance of needing lifelong treatment with insulin, but they do not know when this will happen. Up until now there has been no specific clinic or support pathway available for such families living in WA.
“We wanted to provide a model of care to meet the needs of families living with early-stage T1D so we undertook a co-design project that included community conversations, workshops and focus groups with community members and health care providers to understand their unique needs and gain feedback on a fit-for-purpose clinic to be established at Perth Children’s Hospital.”
Dr Sarah Black, who is leading the delivery of the resulting Early-stage T1D clinic, said the team were excited to launch the new model of care this week.
“Our research nurses have been working with WA families like these for years and could see the gap in existing care to meet the need for them to be supported in their early diabetes journey,” Dr Sarah Black said.
“In this new clinic, WA families will be cared for by a multidisciplinary team and receive medical and psychosocial support and relevant education.
“The goal of this clinic is to create a flexible and adaptable health care service that evolves with advances in the field and needs of affected families.”
Yvette Saint, mother of Emily, was part of the co-design process following Emily’s early-stage diagnosis. She attended the first clinic on Monday and said seeing their daughter begin care at the early-stage T1D clinic had been a tremendous relief for their family.
“Knowing she is now in a clinical setting brings us comfort during uncertain times, and having her health closely monitored eases much of the stress we’ve been carrying,” Mrs Saint said.