None listed
Conditions
Brief summary
Background: Young people with type 1 diabetes (T1DM) are life-long health service users. Good control of blood glucose can reduce or slow complications, but require services that support effective self-management. When teenagers must move to adult care, transition is often problematic; up to 40% attrition and poor diabetic control result in crisis use of acute services. Evidence is limited, especially outside urban services, but effective transition provides age-appropriate care and can maintain young people in the health system. Aims: To examine whether a new Systems Navigation model of transition and care for young people with type 1 diabetes in regional/rural NSW will result in the improved outcomes seen for this model in other settings; To examine the effectiveness of service redesign processes to support implementation of this new care model. Design is a single blind cluster randomized controlled trial, randomizing the 8 service clusters of Hunter New England Health to either intervention (new Systems Navigation model) or control (current) service models with patient-level outcomes assessment. Participants are young people with T1DM transitioning from paediatric care in their first two years with HNEH adult services. Sample size calculation is based on the primary outcome of usage of planned, routine preventive services; 152 subjects will convey 80% power to detect a 50% improvement in the intervention compared to control group. Outcomes: We aim to increase follow-up of young people with T1DM moving to adult services, and their retention in contact with services. This should improve indices of diabetes control such as HbA1c levels, reduce use of acute services and costs. Patient service satisfaction should be maintained. Data will be analysed on intention to treat basis, taking account of clustering of patients; appropriate regression models will determine if there is statistically significant difference between intervention versus control group outcomes.
Interventions
A Systems Navigation Model of Transitional Care comprising:
a) a transition preparation educational programme initiated and delivered on a combination of 1:1 and group basis by diabetes nurses educators employed by the local public health paediatric services, tailored to individual need (ie number of sessions will depend on assessment outcomes) within an agreed topic framework. The topic framework entails and records delivery of:
Age 14 years: Assessment of diabetes knowledge, dietary and social
A Systems Navigation Model of Transitional Care comprising: a) a transition preparation educational programme initiated and delivered on a combination of 1:1 and group basis by diabetes nurses educators employed by the local public health paediatric services, tailored to individual need (ie number of sessions will depend on assessment outcomes) within an agreed topic framework. The topic framework entails and records delivery of: Age 14 years: Assessment of diabetes knowledge, dietary and social work review, mental health assessment. Education covered: diabetes ‘Sick Day’ management; Insulin therapy and insulin adjustment; school issues and school camp; management of ‘hypos’; effects of puberty on diabetes; exercise and diabetes; diabetes complication screening; diabetes control; parental support and ‘letting go’; job rights at work. Age 15 years: options for adult care discussed with the young person; dietary and social work review and mental health assessment. Education delivered at this time: alcohol and related issues; diabetes and sexuality; feelings and emotions – burn out; confidentiality; Government allowances; smoking and recreational drugs; getting a driver’s licence; obtaining a Medicare card; getting a job – rights at work; what to expect from a medical consultation; parental support and ‘letting go’. Age 16-17 years: Re-assessment of diabetes knowledge and skills based on previous years’ content. Discuss options for adult care with the young person and their family; dietary and social work review and mental health assessment; referrals made to the ACI Transition Care Coordinator, the Diabetes Care Coordinator and Connecting Care service care coordinator; Education delivered/ discussed at this time: alcohol and related issues; HSC and school stress; smoking and recreational drugs; getting a driver’s licence; tertiary study; parental support and ‘letting go’; getting a job-rights at work; diabetes and travel; public health care system and costs; diabetes and sexuality; NDSS; obtaining a Medicare card; diabetes and ‘schoolies’ week; feelings and emotions – burn out; how to actively participate in a medical consultation. A Transition Clinic visit is arranged and letter sent to the GP discussing transition; joint or alternating visits may occur with paediatric and adult teams. Age 18+ years: Prior to transfer: re-assess diabetes knowledge and skills/ address any knowledge deficits; dietary and social work review and mental health review; arrange appropriate supplies, medications and prescriptions; make referral/ arrange discharge summary to adult diabetes service/doctor, GP and Transition Coordinator. Session frequency and duration will be recorded - the aim is for each participant to achieve knowledge and skills for self-management in line with the framework established for each age band. We are not aiming to simply spend a pre-set amount of time with participants, but to deliver the learning required for each individual. We will record duration and staff involved with every contact so we can estimate 'dosage' in relation to outcomes. b) a searchable clinical database of young people, their service contacts and outcomes, allowing clinicians easy access to monitor individual patient contacts and clinical data; c) a ‘Systems Navigation’ coordinator with a directory and comprehensive knowledge of and links to local service providers, who will conduct a needs assessment and liaise between patients and service providers, and function as a single point of contact for healthcare professionals, young people and families; d) an educational programme for rural healthcare practitioners on care planning for support and management of T1DM in young people, offering a minimum of 1 session attendance face to face with an endocrinologist, diabetes nurse educator, dietitian and social worker; at least one session delivered in each location every year; attendees free to attend in line with personal preference - multiple attendances acceptable if preferred; these will be group sessions, with a register of attendance, and content addressing the full range of clinical needs for care of young people with type 1 diabetes, with each session tailored to local preference. e) a locally tailored consumer-led programme of educational, social and peer support activities for young people, to be developed in response to locally-identified needs and preferences canvassed through a local survey/ interviews/ website, managed by a joint consumer/ healthcare professional management group. Overall intervention duration 2 years.
Sponsors
University of Newcastle
Study design
Allocation
Randomised controlled trial
Intervention model
Parallel
Primary purpose
Educational / counselling / training
Masking
Blinded (masking used) (Investigator)
Eligibility
Sex/Gender
All
Age
18 Years to 30 Years
Healthy volunteers
No
Inclusion criteria
Young people (aged 18 to 30 years) with T1DM maintained as young adults by Hunter New England Local Health District services
Exclusion criteria
Not type 1 diabetes
Outcome results
None listed