Multi-stakeholder activity management for children with Chronic Fatigue

Chronic fatigue syndrome (CFS) or myalgic encephalomyelitis (ME) is a complex condition characterised by severe mental and physical fatigue, accompanied by a range of other symptoms including muscle pain, sleep disturbance and headaches (Baker & Shaw, 2007). It is thought that CFS/ME affects approximately 0.1-2% of adolescents, but the prevalence in primary school aged children (5-11 years) is unknown (Brigden, Shaw & Crawley, 2021). However, disability in primary school aged children due to the condition is quite high, with low school attendance and high levels of pain, anxiety, and fatigue (Davies, & Crawley, 2008). Most primary school aged children (5-11 years) are not able to manage their treatment plan independently and thus rely on adults for support (Erickson, Gerstle & Feldstein, 2005). As children usually spend a significant amount of time at school, a large proportion of this support is required from teachers. Despite this, teachers are often ill-equipped to support children living with a chronic condition (St Leger, 2014).
This project aims to improve the fatigue management in children with ME/CFS and communication between key stakeholders involved in their care (parents/teachers). This project will develop and assess the feasibility of a interactive wearable/digital system that can facilitate self-monitoring of physical activity (e.g. step count, HR) and subjective activity and symptom ratings. It is anticipated that this will connect to a dashboard which will allow stakeholders to monitor the child's activity and facilitate teachers and parents having greater involvement in day-to-day management of care whilst at school.
The beginning phase of this project will use qualitative, co-design methods with teachers, parents, and children to understand the design requirements of the wearable and digital system. The second phase of the project will involve development of the system; this will be a largely iterative process as part of co-designing alongside the stakeholders until a final design is reached. The final phase of this project will involve evaluating the feasibility and effectiveness of the multi-stakeholder tool in improving activity management. This is important moving forward to understand whether this technological approach is feasible to implement into schools and has a positive impact on the management of CFS/ME in primary school children.
References
Baker, R., & Shaw, E. J. (2007). Diagnosis and management of chronic fatigue syndrome or myalgic encephalomyelitis (or encephalopathy): summary of NICE guidance. Bmj, 335(7617), 446-448.
Brigden, A., Shaw, A., & Crawley, E. (2021). "it'sa medical condition... you need to support as much as possible": a qualitative analysis of teachers' experiences of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). BMC pediatrics, 21(1), 1-9.
Davies, S., & Crawley, E. (2008). Chronic fatigue syndrome in children aged 11 years old and younger. Archives of Disease in Childhood, 93(5), 419-421.
Erickson, S. J., Gerstle, M., & Feldstein, S. W. (2005). Brief interventions and motivational interviewing with children, adolescents, and their parents in pediatric health care settings: a review. Archives of pediatrics & adolescent medicine, 159(12), 1173-1180.
St Leger, P. (2014). Practice of supporting young people with chronic health conditions in hospital and schools. International Journal of Inclusive Education, 18(3), 253-269.

Impact on Health and Care
The CDT primarily addresses the most pressing needs of nations such as the UK - namely the growth of expenditure on long term health conditions. These conditions (e.g. diabetes, depression, arthritis) cost the NHS over £70Bn a year (~70% of its budget). As our populations continue to age these illnesses threaten the nation's health and its finances.

Digital technologies transforming our world - from transport to relationships, from entertainment to finance - and there is consensus that digital solutions will have a huge role to play in health and care. Through the CDT's emphasis on multidisciplinarity, teamwork, design and responsible innovation, it will produce future leaders positioned to seize that opportunity.

Impact on the Economy
The UK has Europe's 2nd largest medical technology industry and a hugely strong track record in health, technology and societal research. It is very well-placed to develop digital health and care solutions that meet the needs of society through the creation of new businesses.

Achieving economic impact is more than a matter of technology. The CDT has therefore been designed to ensure that its graduates are team players with deep understanding of health and social care systems, good design and the social context within which a new technology is introduced.

Many multinationals have been keen to engage the CDT (e.g. Microsoft, AstraZeneca, Lilly, Biogen, Arm, Huawei ) and part of the Director's role will be to position the UK as a destination for inwards investment in Digital Health. CDT partners collectively employ nearly 1,000,000 people worldwide and are easily in a position to create thousands of jobs in the UK.

The connection to CDT research will strongly benefit UK enterprises such as System C and Babylon, along with smaller companies such as Ayuda Heuristics and Evolyst.

Impact on the Public
When new technologies are proposed to collect and analyse highly personal health data, and are potentially involved in life or death decisions, it is vital that the public are given a voice. The team's experience is that listening to the public makes research better, however involving a full spectrum of the community in research also has benefits to those communities; it can be empowering, it can support the personal development of individuals within communities who may have little awareness of higher education and it can catalyse community groups to come together around key health and care issues.

Policy Makers
From the team's conversations with the senior leadership of the NHS, local leaders of health and social care transformation (see letters from NHS and Bristol City Council) and national reports, it is very apparent that digital solutions are seen as vital to the delivery of health and care. The research of the CDT can inform policy makers about the likely impact of new technology on future services.

Partner organisation Care & Repair will disseminate research findings around independent living and have a track record of translating academic research into changes in practice and policy.

Carers UK represent the role of informal carers, such as family members, in health and social care. They have a strong voice in policy development in the UK and are well-placed to disseminate the CDTs research to policy makers.

STEM Education
It has been shown that outreach for school age children around STEM topics can improve engagement in STEM topics at school. However female entry into STEM at University level remains dramatically lower than males; the reverse being true for health and life sciences. The CDT outreach leverages this fact to focus STEM outreach activities on digital health and care, which can encourage young women into computer science and impact on the next generation of women in higher education.

For academic impact see "Academic Beneficiaries" section.