Objective
The primary objective (O1) of this study is to develop a digital psychosocial screening and monitoring tool for use by Diabetes Clinicians during routine consultations with young people living with Type 1 Diabetes. The tool will be developed with young people living with Type 1 diabetes (and caregivers) and Diabetes Clinicians. The digital tool will be used to collect information from young people about their psychosocial wellbeing (e.g. mood/feelings, concerns, and support needs) prior to their upcoming clinic appointment, to provide structure and to guide conversations and inform care planning between Diabetes clinicians and young people living with Type 1 Diabetes during routine diabetes appointments. The tool aims to: 1. Empower young people to shape their diabetes consultation according to their psychosocial health needs 2. Help Diabetes Clinicians to identify which psychological, social, and lifestyle issues are most important to discuss with young people at that point in time 3. Identify support needs and inform decisions about further intervention.
The second objective (O2) is to collect data to evaluate the usefulness and usability of the digital psychosocial wellbeing tool as part of routine Diabetes care for young people attending a Multidisciplinary Paediatric Diabetes Clinic in Northern Ireland. This testing process will involve collecting information on levels of engagement with the tool, gathering feedback on how easy the tool is to use, and exploring the usefulness or value of the tool from the perspectives of young people living with Type 1 diabetes. This information will help us decide on further evaluation research plans and will provide a sense of how useful the tool is in a Paediatric Diabetes service.
Background Rationale
Best practice recommends the psychosocial screening as a routine aspect of Diabetes care. At present, however, there is no structured and easy way to assess and reviewing holistic psychological and social well-being for young people living with Type 1 Diabetes. Currently, most psychological and social wellbeing screening tools come in the form of individual questionnaire measures. These often do not gather information in one place, and most of these measures are paper-based. This presents a challenge within a busy clinic context i.e., who promotes completion of the tool, privacy in completion, how scoring and interpretation is completed, where the tool results are stored. Young people have also been shown to disclose less sensitive information using paper-based tools, clinician administered or semi-structured interviews than digital tools. These types of screening measures can also be anxiety provoking for young people and language and literacy ability could be a barrier to completing written/verbal paper-based measures. Completion of traditional screening assessments is also a less empowering and engaging experience for young people. Manual scoring, interpretation, and provision of feedback to families may not be completed on the day the measure is administered, so the information gathered is often not available at the time of the diabetes consultation. Diabetes Clinicians therefore often lack the contextual information and time during the appointment to target conversations on what matters to young people, in order to identify psychosocial issues/support at the point of need.
Introducing holistic psychosocial wellbeing assessment and tracking in routine Diabetes Clinic appointments is the best setting to identify and target psychosocial support, so that advice and help can be gleaned from the entire Diabetes Team. In addition, given the limited availability of Paediatric Psychologists in Diabetes Teams, assessment of psychosocial well-being prior to routine diabetes clinic appointments could also be used to target which young person’s clinic appointment the Paediatric Psychologist needs to attend (as opposed to calendar choice). This can make better use of a limited capacity, so the Paediatric Psychologist will be in the right clinic for the young people who need it most.
While there have been advances in the development of a range of digital tools to measure and manage physical health needs related to Diabetes, there has been limited development of digital tools that monitor psychosocial needs, highlight areas of strengths and progress, and help Diabetes Clinicians to target resources available to young people living with Type 1 diabetes. In other Paediatric groups there have been some advances in this area. An Integrated Assessment Mapping Portal electronic platform has been designed by University Hospitals Bristol and Macmillan Teenage Cancer Trust for young people with cancer to assess the impact of cancer across all aspects of a young person’s life. The IAM PORTAL (https://www.iamportal.co.uk/) was co-designed with young people living with Cancer and provides a web platform and app for young people to easily explore, navigate, and convey their psychosocial wellbeing and lifestyle priorities and needs. The selections made by young people and information submitted on the IAM interface can be captured in one place, which provides a framework for multidisciplinary team discussion and to identify individualized needs. This process means that care planning is more person-centred and empowering for young people.
This research will develop and evaluate a similar digital psychosocial screening and monitoring tool to the IAM PORTAL (adapted for young people living with Type 1 diabetes). The tool will be designed for use by Diabetes Teams and will enable young people and Diabetes Clinicians to identify strengths in progress, track progress over time, and identify areas to target psychosocial intervention at the point of need.
Description of Project
Best practice recommends the psychosocial screening as a routine aspect of Diabetes care. However, at present, there is no structured and easy way to assess and reviewing holistic psychological and social well-being for young people living with Type 1 Diabetes. Most psychological and social wellbeing screening tools come in the form of individual questionnaire measures. Such measures do not gather information in one place, and most are paper-based. They can be anxiety provoking for young people and language/literacy ability could be a barrier to completing written/verbal paper-based measures. Completion of traditional screening assessments is also a less empowering and engaging experience for young people. They can be difficult to administer within a busy clinic context. Manual scoring, interpretation, and provision of feedback to families may also not be completed on the day the measure is administered, so the information gathered is often not available at the time of the diabetes consultation. Diabetes Clinicians therefore often lack the contextual information and time during the appointment to target conversations on what matters to young people, in order to identify psychosocial issues/support at the point of need. Addressing this Diabetes health service gap, we will develop and evaluate a digital psychosocial wellbeing tool for use by Diabetes Teams, to provide a more resourceful method of assessing and monitoring holistic psychosocial wellbeing. The information collected by the tool will guide the conversations during routine Diabetes appointments and will enable young people to share their needs, voices, and feel more empowered to shape consultations with their Diabetes healthcare team.
There are two steps to this research. Step 1 involves developing the digital psychosocial wellbeing screening and monitoring tool. A digital health company will be funded to deliver a series of Patient and Public Involvement (PPI) workshops to co-create the tool with young people living with Type 1 diabetes (and caregivers) and Diabetes Clinicians. Workshop attendees will help to shape the content features, information, and the appearance/style of the tool, as well as the branding and tool name. The company will develop prototypes of the tool for feedback, after which they will develop the tool based on the collective feedback from all workshops.
Step 2 involves collecting information to evaluate the usefulness and usability of the digital psychosocial wellbeing tool as part of routine Diabetes care for young people attending a Paediatric Diabetes Clinic in Northern Ireland. Following ethical approval, N=20-25 young people living with Type 1 diabetes aged 13-18 years who attend a Paediatric Diabetes Clinic in Northern Ireland will be invited to take part in the testing of the tool. Young people (or guardians on behalf of young people) who consent to take part will be encouraged to complete the tool prior to their upcoming standard clinic or annual review appointment. The selections made by young people and information submitted on their digital tool profile will be digitally sent to their Diabetes Team. Before to the appointment, the Diabetes Team will be able to review the young person’s well-being profile (using visual summaries automatically generated by the tool) and use the information to guide conversations reflecting on change and progress. This information will help to shape conversations during the Diabetes appointment. The research team will collect and analyse information on levels of engagement with the tool, gathering feedback on how easy the tool is to use, and exploring the usefulness or value of the tool from the perspectives of young people living with Type 1 diabetes. This information will help us decide on further evaluation research plans and will provide a sense of how useful the tool is in a Paediatric Diabetes service.
Anticipated Outcome
A primary outcome of this research is the development of a digital psychosocial wellbeing screening and monitoring tool, with young people living with Type 1 diabetes (and caregivers) and Diabetes Clinicians involved in the developmental process. This process gives voices to young people so that they can actively shape the future of their diabetes care. The tool will be designed for use by Multidisciplinary Diabetes Teams, to provide a quick and resourceful method of assessing holistic psychosocial wellbeing. The information collected by the tool will enable young people and Diabetes Clinicians to identify strengths in progress, track progress over time, and identify areas to target intervention at the point of need. The tool is intended to be completed prior to an upcoming Diabetes appointment, which means that Clinicians will acquire a holistic picture of the young person's wellbeing and can make better use of the time available with each young person. This will also provide young people with more opportunity to share their needs, voices, and feel more empowered to shape consultations with their Diabetes healthcare team. In addition to this, the pattern of psychosocial well-being recorded by the tool could also be used to target which young person’s clinic appointment the Paediatric Psychologist needs to attend, as opposed to calendar choice. This can make better use of a limited capacity, so the Paediatric Psychologist will be in the right clinic for the young people who need it most.
The second associated outcome of this research is to test the usefulness and usability of the digital psychosocial wellbeing tool as part of routine Diabetes care for young people attending Multidisciplinary Diabetes Clinics in Northern Ireland. This testing process will involve collecting information on levels of engagement with the tool, gathering feedback on how easy the tool is to use, and exploring the usefulness or value of the tool from the perspectives of young people living with Type 1 diabetes.
The intention is that this tool will become part of routine Paediatric Diabetes services if this research suggests that the tool is usable and useful. If usability and usefulness is discovered through this research, the research team will apply for a larger sum of funding to support longitudinal research to evaluate the potential health, service-related, and cost-benefits of the tool as part of routine Paediatric Diabetes care across Northern Ireland. There is potential also to collaborate with health services outside of Northern Ireland, for example with services in the Republic of Ireland and mainland UK or in other parts of the world where the research team developed connections e.g. Denmark, Germany, and California. This digital tool could also be adapted for adult Type 1 Diabetes populations and adapted to support use in different countries, languages, and cultures outside the UK and Ireland, so the potential benefits for people with Type 1 diabetes are far-reaching.
Relevance to T1D
Type 1 Diabetes is one of the most challenging life-long chronic health conditions for children and young people. It is estimated that 78,000 children under 14 years of age are diagnosed with diabetes globally on an annual basis. Living with Type 1 Diabetes requires maintaining a demanding and complex management plan, treatment and change in lifestyle. It is a full time job that is introduced at a stage of life where children and young people are adapting, growing and developing. It is well-recognised that psychological and social (psychosocial) factors play a role in adjustment and coping and keeping up with the Diabetes management plan, and have a significant impact on medical health. Given the wide impact and constant demands and responsibility of caring for their health, it is understandable that coping with Diabetes can affect psychological and social well-being. Despite putting time and energy into following a management plan, it can be confusing and frustrating understanding the fluctuations in blood glucose levels. Less healthy psychological well-being can impact on blood glucose levels and maintenance of self-management plans. Research studies (e.g., Ng et al., 2022) have outlined that adolescents, compared to adults, experienced higher rates of Diabetes-related distress, periods of burnout and feelings of being unable to cope with living with the daily burden of Diabetes.
Navigating life with Type 1 diabetes is challenging and psychosocial struggles are commonplace among young people living with Type 1 diabetes. The need to improve psychosocial support is well recognised within the Diabetes community. In current Diabetes clinical care pathways in Northern Ireland (and similarly in Ireland/UK), psychosocial support needs are not routinely assessed, monitored, and discussed in a way that makes best use of Diabetes Clinicians time with young people (and their caregivers). In addition, during Diabetes appointments, the agenda is typically set by the Diabetes Clinician (and sometimes caregivers), so young people attending clinics may have little opportunity for choice and control over the topics discussed during consultations. There is also often less consideration of factors outside of Diabetes which impact on care and management and which may not be known by healthcare providers. As well, while Diabetes Teams typically involve a Paediatric Psychologist, this is a limited staff resource, and Paediatric Psychologists are not always available to attend appointments to assess and discuss psychosocial needs.
This research will directly address this gap in Diabetes services (initially in a Northern Ireland context) by developing and introducing a digital psychosocial screening and monitoring tool, which can empower young people to explore, navigate, and convey their psychosocial wellbeing and lifestyle priorities and needs. The information obtained through the tool can then be used by Diabetes Clinicians to guide discussions during appointments with young people to identify individualized needs and improve communication and relationship building. This process means that care planning is more person-centred and empowering for young people.
This research has long-term benefits for young people living with Type 1 diabetes (and adults if later adapted), as the tool is intended to be integrated into Diabetes team clinical management to provide a quick and resourceful method of assessing holistic psychosocial wellbeing. The information collected by the tool will also enable young people and Diabetes Clinicians to identify strengths in progress, track progress over time, and identify areas to target intervention at the point of need. In the current research, young people living with Type 1 diabetes will be involved in the tool development and will be involved in the tool evaluation so that their perspectives are captured, to ensure that the tool best supports their needs and preferences.