Bath Centre for Fatigue Services & West England AHSN: Replenish-ME

Executive Summary

Background

The “Replenish-ME” project, was co-designed to use the KiActiv^® Health self-management programme in parallel with NHS current services for patients living with Chronic Fatigue Syndrome (CFS) / Myalgic Encephalomyelitis (ME). The clinical team felt that KiActiv^® Health could be a valuable tool to provide patients with an alternative, or additional, method of recording engagement in their daily activities/occupations. The personalised intervention was perceived as enabling a more objective and detailed understanding of individual routines and energy expenditure, than the current activity, rest and sleep logs used in current services.

Innovation

KiActiv^® Health is a personalised and guided online behaviour change service that empowers participants to optimise everyday physical activity in the context of their condition.  KiActiv^®’s patented technology evaluates minute-by-minute physical activity data from a validated wearable monitor, which is displayed instantly in the user’s personalised online dashboard, and is available 24/7 to provide meaningful and actionable feedback. Patients are also supported remotely by phone calls with a dedicated KiActiv^® Mentor at 6 key time points during the 12-week programme, to help them build an understanding of the value of their daily activities and the confidence to plan, monitor and improve. At the end of the 12-weeks, the patients retain access to their personal dashboard and activity monitor, enabling them to continue their self-management using the technology if desired.

Purpose/Objective

This pilot looked to explore whether KiActiv^® Health could help those diagnosed with CFS/ME to improve the self-management of their condition by developing a greater understanding of how their day-to-day activities impact on their health and energy levels. In the context of CFS/ME, understanding how daily physical activities impact on energy balance, enables patients to maintain a level of movement within their energy availability, and is an important component of effective self-management.

Methodology

Between February and September 2020, referrals were made to KiActiv^® from an NHS Fatigue Management Service.

In addition to collecting objective physical activity data and qualitative data from 2-hours of Mentor calls, patients completed validated pre- and post- intervention questionnaires, including the Chronic Fatigue Acceptance Questionnaire (CFAQ-8), and the Visual Analogue Scale (VAS) extracted from the EuroQol five-dimension questionnaire (EQ-5D). Two single-item worded questions graded on a 4-point Likert scale relating to awareness and confidence were also asked.

Key Findings

• Demographic: 46 patients contacted KiActiv^®, and 43 patients (8 males, 35 females) were enrolled on the programme. Average age = 38 years, average BMI = 26 kg/m².
• Completion: 41 patients (95%) completed the 12-week programme.
• Engagement: The use of the technology was excellent and included 80% of days being classed as having complete data sets. 76% of patients continued to engage with their KiActiv^® technology beyond the initial 12-week programme.
• PROMS: Statistically significant improvements were seen in CFAQ-8, EQ5D, awareness and confidence.
  • 64% of patients felt better able to pursue life activities regardless of their fatigue
  • 60% of patients gained greater awareness of how different activities could impact on their energy expenditure
  • 60% of patients were more accepting of their fatigue, culminating in a statistically significant improvement in overall health
    • This was despite a wide array of negative impacts such as the Covid-19 pandemic and illness, as well as other negative impacts specific to a CFS/ME cohort
  • 54% of participants improved their confidence in their ability to manage and pace their daily activities to optimise energy levels
  • 71% of patients believed that KiActiv^® Health met or exceeded their expectations

• Patient reported benefits included:
  • An increased awareness of all movement, not just exercise. This translated into increased understanding regarding how various everyday activities contribute to daily energy expenditure, and their subsequent impact on energy levels
  • Enhanced knowledge regarding how to effectively pace daily activities to better manage energy levels, which translated into an improved ability to self-manage
  • The ability to keep a consistent log of objectively measured physical activity, replacing the need for physical diaries or logs, which are often time and energy consuming
  • By improving their ability to efficiently manage their energy levels, some participants were able to undertake physical activities which they had previously stopped (i.e., going out for a walk with their partner, when they had previously felt too fatigued as a result of ‘overdoing it’ earlier in the day, or on previous days)

Of the 2 patients who did not complete the full 12-week programme, 1 did not have the required technology to start the programme, and the other withdrew citing the desire to focus solely on their current care.

Conclusion

The results from this pilot indicate that the use of KiActiv^® Health can have a positive impact amongst patients diagnosed with CFS/ME. Once recruited to KiActiv^® Health, patients were highly adherent and unlikely to drop out of the programme. For these patients, engagement in the mentoring sessions, wearing of the physical activity monitor, and syncing of the device, suggested that CFS/ME patients valued the innovation. CFS/ME patients particularly liked how the technology allowed them to objectively assess their physical activity energy expenditure, which in turn enabled them to make better informed decisions to improve energy management.

The disruption caused by the COVID-19 pandemic to usual CFS/ME services has highlighted the appeal and accessibility to patients of this remote service, which suggests that it may similarly engage those patients unable or unwilling to attend current provisions going forward. This pilot was offered to CFS/ME patients only but the results suggest that it could be equally successful amongst those diagnosed with other fatigue-inducing conditions, such as long COVID. The programme delivers person centred care at home and without the need to travel.

The 12-week KiActiv^® Health programme is currently employed by the NHS in multiple pathways and can be scaled immediately across the country to offer eligible patients the support they need and deserve, as well as helping to manage growing waiting lists and reduce mounting pressure on rehabilitation services.