1st Floor, North Wing, St Marys House
St Martins View
Chapel Allerton
Leeds
LS7 3LA
Robin Ellis/
Contact Person:Anne-Marie
Contact No:0113 855 9772Our Ref:FOI-2047
27th April 2017
Dear Mr Ellis,
Thank you for your further correspondence received on 29thMarch 2017, requesting information from our Trust.
Under the terms of the Freedom of Information Act 2000 we are able to provide you with the following information:
Re: your request for information on the changes in the physical health of Chronic Fatigue Syndrome (CFS) patients, as a result of attending the CFS, clinic/s between 2007-2017, including but not limited to each of the following parameters.
Physical functional capacity - objective changes
i) two day CPET test
ii) 6 minute walk test
iii) Up and go Test
iv) Oxygen uptake while walking
v) resting heart rate
vi) heart rate variability
vii) activity as per actigraph
viii) activity as per pedometer
ix) ataxia
x) daily temperature
Our CFS/ME Service does not use any of the above measures for tracking the physical changes of patients during treatment, however, some service users may work on physiological measures and targets if they undertake a graded exercise approach but such activity would be agreed with them on an individual basis and recorded with theirhealth care notes as part of the care pathway, and therefore cannot be separately identified and reported on.
Our programme in Leeds is based upon functional goals which are of value to the patient / agreed collaboratively with them. This may include sustaining work or valued occupations, cognitive, social goals etc. We use an activity management approach which grades the domains of most value to the patient. This may include exercise tolerance (we use some pedometers / Fitbits etc.) and charts if the patient wants to work in this way. We certainly do baseline setting and measureable goal setting but it is completely patient focused rather than a standard rehabilitation programme that is delivered.
We are currently undertaking a review of the patient rated outcome measures which includes consultation with staff and patients. The domains we have agreed include physical function, self-efficacy, perceived disability, symptom severity as well as change in status including benefit claimed and work.
Physical functional capacity - subjective changes
i) return to school/work part-time
ii) return to school/work full-time
ii) change in hobbies/sports
The Collin, White and Crawley Paper (2017 unpublished) also reports on functional domains in comparison with other services:
- Paid work (employed/self-employed) since attending CFS/ME service
- Education or training since attending CFS/ME service
- Unpaid work and domestic tasks (childcare, housework, voluntary work, driving, cooking, cleaning, etc.) sinceattending CFS/ME service
- Social and leisure activities (going out, inviting people over, hobbies, gardening, travel, exercise, etc.) since attending CFS/ME service.
Physiological changes
i) anaerobic threshold
ii) chrontropic incompetence
ii) diabetes insipidus
iv) orthostatic intolerance
We do not use the above measures to report on the effectiveness of “treatment”.
I do not seek information at the individual patient level, rather I seek information at the level used to determine the effectiveness and success rates of "treatments" provided at the CFS clinics.
Leeds and West Yorkshire CFS/ME Service have been participating in the CFS/ME National Outcome Database (NOD) based in University of Bristol since its inception in 2005. The latest results collated for patients assessed by our service between 1st Jan 2010 and 31st December 2014 is attached for reference. This includes Summary Outcome Data / the use of patient reported outcome measures (PROM) and Clinician rated Outcome measure (CGIS) – see attached.
With regards more recent outcomes; we have been taking part in a further piece of research which is being submitted for publication. As this is still in draft currently, we are unable to share information at this stage, although we are able to relate titles and who the authors are;
Outcomes among adults treated by NHS specialist chronic fatiguesyndrome/ME services in England: a cohort study, by Simon M Collin, Peter D White, Esther Crawley
The outcome measures used are:
SF36 Physical Function, Work & Social Adjustment
Visual analogue pain rating, HADS Anxiety Score, HADS Depression Score
Jenkins Sleep Jenkins, Fatigue Subscale Concentration, Motivation
Subscale (range 4-28) Activity Subscale
As this information is currently in the publication process, outcomes and findings relating to this piece of research are declined on the grounds that this data is exempt under Section 22(1)(a) of the Freedom of Information Act as this information is scheduled for future publication.
If you are still not satisfied you can contact the Information Commissioner’s Office, who oversees Freedom of Information and Data Protection in the UK.
Information Commissioner’s OfficeWycliffe House
Water Lane
Wilmslow
Cheshire
SK9 5AF
If there is anything that you need further clarification on, please do not hesitate to contact us.
Yours faithfully,
Anne-Marie Field
Information Governance Support Officer
Email:
/ A teaching organisation providing mentalhealth and learning disability services