Energee – Innovating digital tools for management of chronic fatigue

CLAHRC YH team                                                                                        

Dr Peter Cudd – lead – p.cudd@sheffield.ac.uk

Prof. Sue Mawson - s.mawson@sheffield.ac.uk

Other team members

Dr David Paling – Neurology Clinical lead for MS – david.paling@sth.nhs.uk

Ms Sarah Lacey – Occupational Therapy - Sarah.Lacey@swyt.nhs.uk

Ms Daisy Cam – Multiple Sclerosis Specialist Nurse - Daisy.Cam@sth.nhs.uk

Ms Emma Broglia – Psychology & CATCH – e.l.broglia@sheffield.ac.uk

Dr Abigail Millings – Psychology & CATCH - a.millings@sheffield.ac.uk

Prof. Chris Burton – ScHARR & AUPMC - chris.burton@sheffield.ac.uk

Ms Lesley Crowther – Occupational Therapy – lesley.crowther@sth.nhs.uk

Ms Celina Roberts - Occupational Therapy - Celina.Roberts@sth.nhs.uk

Aims

To innovate evidence based digital tools that support management of disease associated chronic fatigue – across diseases.

To build a multidisciplinary collaboration to support the multiple disease approach.

Background

Chronic Fatigue is a significant symptom across many long term conditions, e.g. Cancer, Arthritis, Stroke and is the main symptom of ME or Chronic Fatigue syndrome. It is also common in Chronic pain patients. In many conditions it is described by people with the condition as their worst symptom. The causes of Chronic Fatigue are not well understood and a diverse variety of interventions have been tried across diseases. Because of the wide spread prevalence of fatigue across diseases there is a vast literature on the topic.

Chronic fatigue associated with disease became a CLAHRC YH topic because local hospital Neurologists and Occupational therapists in Cancer, Pain management and Arthritis all expressed a need to have better tools for managing their patients’ chronic fatigue. Discussion with these practitioners also showed there were some common interventions applied across diseases, while others were not. This suggested that a ‘plug and play’ platform solution could be investigated where, the professionals or patients would use intervention components with good evidence of patient benefit for the particular disease. All the stakeholders proposed a solution that would utilise mobile digital technology – because of the daily life help this may offer.

Activity

An MRC Proximity to Discovery funded exploration of the literature confirmed the possibility of adopting the platform approach for chronic fatigue management across diseases. It also confirmed the vastness of the literature; many criteria had to be added to reduce the task to a more manageable level – e.g. only considering studies: with the highest levels of evidence; interventions that could reasonably benefit from digital support/substitution. The review is ongoing.

Current interventions employed in the health service for chronic fatigue management have some evidence to support their use but none are based on an understanding of the causes and mechanisms that underlie chronic fatigue. The wider team is exploring physiological monitoring as one way to add insights and also to add self-management tools for patients.

Multiple sclerosis has become a significant focus for digital tool development in TaCT because of a clear demand established from NHS staff and public organisations of people with the condition. There is an accepted and evidenced intervention in the form of a six week face to face behaviour change based course with the acronym FACETS . An app has been envisioned that either through self-management or with low level involvement of NHS staff provides patients with an alternative to FACETS.

Organisations linked with our work

Genzyme Ltd.

Sheffield Teaching Hopsitals NHS Trust

Shift_MS

South-West Yorkshire Foundation Trust