Improving the uptake of Occupational Therapy as an evidenced-based intervention to improve management of Chronic Fatigue Syndrome
Submitting InstitutionUniversity of Cumbria
Unit of AssessmentAllied Health Professions, Dentistry, Nursing and Pharmacy
Summary Impact TypeHealth
Research Subject Area(s)
Medical and Health Sciences: Public Health and Health Services
Summary of the impact
The work of Professor Diane Cox has been instrumental in enhancing
services and improving outcomes for patients with Chronic Fatigue Syndrome
/ Myalgic Encephalomyelitis (CFS/ME), and other fatigue related
conditions. Primarily, this has been through changing the interventions
used by Occupational Therapists and other Allied Health Professionals in
healthcare practice to manage such conditions. The research has influenced
amendments to professional standards, guidelines and training for use of
activity and lifestyle management approaches to treating CFS and related
conditions, and has had further impact through influencing the set-up of
specific CFS services using these techniques. The research has
demonstrated that Occupational Therapy can improve engagement and
participation in occupations through activity, and led to its widespread
uptake into practice throughout the UK. The research has underpinned the
National Institute for Health and Clinical Excellence (NICE) guidelines
for CFS/ME and directly influenced the form and implementation of NHS and
private service provision for these conditions in the UK.
The research was begun by Cox whilst working in the NHS as an
Occupational Therapist through the set up and appraisal of interventions
in an Occupational Therapy led CFS service (1988-1998). This was then
furthered at a previous HEI (1998-2000) and at the University of Cumbria
since Professor Cox's appointment in September 2000 as a Senior Lecturer
at St Martin's College, one of the legacy institutions which became part
of the University on formation in 2007. Cox was promoted to Reader in
February 2005, and Professor of Occupational Therapy in May 2011.
Early work identified the role of Occupational Therapy in managing
fatigue and identified the four levels of occupational disruption, which
have subsequently influenced treatment and organisation of specialist CFS
/ ME and other fatigue services. Subsequent research at Cumbria has
identified the effectiveness of Occupational Therapy interventions and
identified treatment approaches and factors which affect patient outcomes.
Whilst led by Professor Cox, the work has been in collaboration with a
number of other Higher Education Institutions, the Department of Health
and NHS Trusts in the UK. A number of studies have supported the work from
a process, pathway and intervention perspective, with the overarching
theme of encouraging engagement and participation in occupations through
Key research projects for Professor Cox include:
- PACE Trial. Pacing, Activity and Cognitive Behaviour
Therapy: a randomised evaluation. Funded 2004-2011. Cox's contribution
to PACE included writing therapist and participant Adaptive Pacing
Therapy (APT) manuals, and training and supervising the Occupational
Therapists undertaking the APT treatment arm of the trial, in addition
to contribution to the research design and resultant publications.
- The use of Telecare/ Telerehabilitation in the management of CFS/ ME,
North Cumbria CFS Service. 2008-2010.
- Exploration of the experience of a Mindfulness programme for adults
with CFS/ ME. North Cumbria CFS Service. 2009-2010
- Recovery Focussed Communication Study. Collaboration with Dorset CFS/
ME Service, University of Southampton, Bournemouth University,
University of Cumbria. 2010-2012.
- The relationship of Occupational Therapy to time, tempo and
temporality in CFS/ ME.
- Systematic literature review to determine the evidence on clinical
interventions for severe Chronic Fatigue Syndrome/ME Collaboration with
Dorset CFS/ ME Service, University of Southampton, University of
Cumbria. July 2012-July 2013
The main research insights include:
- The defining of the wide range of occupational disruption in CFS/ ME
into the four levels of mild, moderate, severe and very severe. The
levels of ability defined through the audits, surveys and intervention
studies (adopted by NICE Guidance 2007 and re-adopted in 2011). (Whilst
this work primarily took place before joining Cumbria (Cox and Findley,
1998), the exploration and testing of this structure in practice is the
basis for subsequent work by Cox, which has enhanced treatment practices
provided by practitioners).
- The level of severity of CFS/ ME does not preclude improvement
(further research currently in progress; collaboration with the
University of Southampton).
- Active treatment that includes activity and cognitive grading has a
better outcome than pacing alone (White et al 2011).
- Time & Occupational domains influence perception of activity
management (Pemberton & Cox 2011, 2013).
- Tele-rehabilitation is feasible and acceptable to people with CFS/ME
(Steel, Garry, Cox 2011).
- Video-conferencing has benefit and value as a face-to-face
intervention mode of delivery for those in rural communities with issues
of access to treatment due to geography and transport.
References to the research
• PD White, KA Goldsmith, AL Johnson, L Potts, R Walwyn, JC DeCesare, HL
Baber, M Burgess, LV Clark, DL Cox, J Bavinton, BJ Angus, G
Murphy, M Murphy, H O'Dowd, D Wilks, P McCrone, T Chalder, M Sharpe, on
behalf of the PACE trial management group (2011). Comparison of adaptive
pacing therapy, cognitive behaviour therapy, graded exercise therapy, and
specialist medical care for chronic fatigue syndrome (PACE): a randomised
trial. Online, February 18, 2011, The Lancet 377: 823-836.
• Steel K, Cox DL, Garry H (2011) Videoconferencing face-to-face
therapeutic interventions for the treatment of long term conditions Journal
of Telemedicine and Telecare 17;3:109-117; first published on 21
• Cox DL, Araoz G (2009) Experience of therapist supervision
within a multi-centre randomised controlled trial. Learning in Health
& Social Care 8; 4: 301-314.
• Pemberton S, Cox DL (2013) Perspectives of Time and Occupation:
Experiences of People with Chronic Fatigue Syndrome/Myalgic
Encephalomyelitis Journal of Occupational Science first view
on-line 4th June 2013.
• PACE Trial, multi-centred randomised controlled trial. Medical Research
Council (MRC) £3.5milion grant awarded to Profs PD White (QML &
Barts), M Sharpe (Edin), T Chalder (KCL); co-investigator 2004-2011. UKCRN
ID 4502. 2004-2011.
• The use of Telerehabilitation in the management of CFS/ ME, Grant from
Northern CFS/ME Clinical Network £20,000 to support a Research Assistant.
Awarded to Heather Garry (Cumbria PCT) and Diane Cox 2007-2009.
• The Management of Fatigue in patients with Advanced Cancer: a pilot
randomised controlled trial of a customised rehabilitation intervention.
£45,000 from Oxfordshire Health Services Research Committee (OHSRC)
Special Cancer Research Grant. Awarded to Mary Barker (nee Black), Oxford
Hospitals NHS Trust, 2007-2009.
Details of the impact
Professor Cox's research has directly influenced the take-up of
Occupational Therapy as a key intervention in the treatment of CFS/ME. It
has directly underpinned advances in the understanding of how fatigue
conditions are experienced in terms of occupational disruption, and has
trialled and disseminated Occupational Therapy interventions which provide
an effective treatment for this and related conditions. Primarily, the
research has provided evidence for interventions to improve outcomes for
mild and moderate presentations of CFS, and has pioneered the use of video
conferencing to improve access to patients with more severe presentations.
It has also led to the improvement of Occupational Therapy practice
through direct engagement with practitioners and services and through
training provision of practitioner training, based on the research
Identification of the levels of occupational disruption was taken up in
the 2007 NICE guidelines, which have subsequently been implemented into
specialist services. Subsequent work has concentrated on the effective
management through Occupational Therapy interventions, which was taken
into account during the 2011 guideline review, which specifically noted
the PACE trial as supporting the NICE guideline recommendations. The work
therefore directly underpins the practice of managing CFS in the UK. The
PACE trial itself also has direct implications for practice, as it
indicated that less active treatments such as APT did not have the same
impact on improvement as Cognitive Behavioural Therapy (CBT) and Graded
Exercise Therapy (GET). Activity Management and graded activity is a key
component of both CBT and GET. The trial showed that when pacing is used
in isolation of other graded programmes it is less effective. These
findings, which are further influencing practice in management of CFS, is
directly related to Professor Cox's research, as the research lead on the
APT elements of the trial.
Influence on practice and service delivery has been effected both through
direct engagement with providers of treatment and interventions (both
public and professional) and through dissemination to stakeholders through
practitioner orientated publications. Research reports and reprints by
professional bodies include:
- Pemberton, S. & Cox, D. (2011) What happened to time? The
relationship of occupational therapy to time. British Journal of
Occupational Therapy, 74, 78-85
Reprinted in Full In; Perspectives for Occupation-Based
Practice, 3rd edition. (2013) Bethesda: American
Association of Occupational Therapy (AOTA).
- Wright F, Cox DL (2012) The Use & Meaning of Activity
Management: A short summary report University of Cumbria &
North Bristol NHS Trust.
- Cox DL (2012) Chapter 19; Chronic Fatigue Syndrome, In, Matthews, G.,
Desmond, P.A., Neubauer, C., & Hancock, P.A. (Eds.), The
Handbook of Operator Fatigue. Farnham, Surrey, UK: Ashgate
Publishing. ISBN: 978-0-7546-7537-2.
- Steel K, H (2009) Using desktop videoconferencing for delivery of
CFS/ME interventions at home in the North Cumbria area: a pilot trial,
The exploratory research for NHS Cumbria has been used to support the
delivery of services via video-conferencing, and as a basis to seek
further funding for this method of intervention and for further research
to support this. Professor Cox also receives frequent requests from
practitioners for copies of these commissioned reports and articles in
practitioner orientated journals to aid in setting up the
videoconferencing approach in practice. Such interest extends beyond
Occupational Therapy interventions for CFS, and is valued by NHS Trust
policy makers exploring telerehabilitation and telecare more widely. The
British Journal of Occupational Therapy (BJOT) is a particularly important
tool for reaching practitioners, as the only monthly peer-reviewed
occupational therapy journal in the world, and subscribed to in over 40
countries worldwide as well as being sent monthly to all British
Association of Occupational Therapy members.
Professor Cox has directly contributed to the creation and development of
specialist CFS/ME services (such as Dorset, Chester, North Cumbria). An
example of development of services is involvement with the Dorset CFS
service, including review of a recovery focussed programme. For North
Cumbria CFS service this has involved piloting the use of telecare, which
particularly benefits service delivery in a region characterised by rural
and remote geography. Other work for North Cumbria has included evaluating
the effectiveness of a mindfulness programme for adults with CFS / ME.
Impact through supporting the establishment of CFS services has included
sitting on the Department of Health CFS/ME Service Investment Steering
Group that enabled the pump priming of new services in England and through
informing the content of rehabilitation programmes for the service
including energy and activity management. The programme has been a
catalyst to inform professionals, patients and carers nationally.
Professor Cox also provides professional supervision to a number of
individuals, directly influencing the services provided. These individuals
practice across the country, at North Cumbria CFS/ME Service (NHS
Cumbria); South Coast Fatigue Ltd, Hampshire; ME North East, Newcastle,
and Lancashire CFS/ ME Service.
The research insights have also been disseminated directly to
practitioners through a range of professional body conferences and other
engagement events. This includes at the College of Occupational Therapists
Annual Conference on a number of occasions, such as specific discussion of
experience of time and of telecare interventions, and at other events,
such as the International Congress on Telehealth and Telecare and the
British Association of CFS/ ME (BACME) conference.
Professor Cox has also delivered a range of continuing professional
development events within the period, including:
- Chronic Fatigue Research, Cumbria & Lancashire Comprehensive Local
Research Networks (CLRN) Musculoskeletal group, Lancaster University,
- Chronic Fatigue Syndrome Northern Clinical Coordinating Centre
Conference, CFS/ ME Therapy: activity management for people with CFS/
ME, Crosthwaite Conference Centre, Keswick, Cumbria, October 2009.
- Update on Chronic Fatigue Syndrome Therapy Research, Queens Hospital,
Romford, Essex, November 2009.
Keeping it tight: Quality control for intervention adherence and
therapeutic alliance in a multi-centred RCT, Oxford Brookes
University, Oxford, November 2011.
- Activity Management in CFS/ ME for the CFS/ME Collaborative and
Network Training. Manchester, October 2008.
- AHP Training in the Management of Chronic Fatigue Syndrome, St.
Cyril's Rehabilitation Unit, Chester, April 2010.
These examples include training provided to a mixed audience of Health
Professionals: Occupational Therapists, Physiotherapists, Nurses,
Psychologists and GPs. The research was used as a foundation for the
training and where appropriate actually demonstrated aspects of Activity
Management within GET and CBT. The training therefore had a direct impact
on clinical practice and the shaping of evidence based services for CFS/
ME in the UK, and methodological issues of research in practice.
Sources to corroborate the impact
Contacts to corroborate impact on practice in specialist CFS services:
- Specialist Occupational Therapist and Director, South Coast Fatigue.
- Therapy Director and Specialist Occupational Therapist, Yorkshire
- Occupational Therapist, North Cumbria CFS/ME Service, Cumbria
Partnership NHS Foundation Trust; (including impact on technology as a
means of delivering services in a rural location).
Statement to corroborate impact on practice in specialist CFS services
and through professional supervision:
- Research Fellow, Primary Medical Care, University of Southampton.