FOI 21/22-0693
DOCUMENT 1
Research – Therapy Best Practice
s47E(d) - certain operations of agencies
• For the following disability groups: Parkinson’s Disease, multiple sclerosis,
muscular dystrophy, dementia, Huntington’s Disease, arthritis, chronic
fatigue, chronic pain, amputation.
• What is considered best practice in terms of:
a) The allied health team members of a multidisciplinary team, i.e. who
Brief
should be involved in managing the disability?
b) The frequency of intervention i.e. approximate dosage – how many
hours per year is required for each professional?
c) Evidence based practice for widely accepted therapy approaches. Not
too much detail required, mainly eg “For MS, X therapy approach is
often recommended, which involves intensive blocks of 20 sessions
every X months”. Looking for information again regarding number of
hours that would be considered best practice.
Date
28/06/21
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Requester(s)
- Assistant Director (TAB)
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Researcher
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Cleared
N/A
Please note:
The research and literature reviews col ated by our TAB Research Team are not to be shared external to the Branch. These
are for internal TAB use only and are intended to assist our advisors with their reasonable and necessary decision-making.
Delegates have access to a wide variety of comprehensive guidance material. If Delegates require further information on
access or planning matters they are to call the TAPS line for advice.
The Research Team are unable to ensure that the information listed below provides an accurate & up-to-date snapshot of
these matters.
The contents of this document are OFFICIAL
1 Contents
2 Summary ......................................................................................................................................... 2
3 Parkinson’s disease ......................................................................................................................... 3
3.1
Clinician involved in management .......................................................................................... 3
3.2
Best practice treatment and frequency of intervention ......................................................... 3
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4 Multiple sclerosis ............................................................................................................................ 4
4.1
Clinician involved in management .......................................................................................... 5
4.2
Best practice treatment and frequency of intervention ......................................................... 6
5 Muscular dystrophy ........................................................................................................................ 7
5.1
Clinician involved in management .......................................................................................... 7
5.2
Best practice treatment and frequency of intervention ......................................................... 8
6 Dementia ......................................................................................................................................... 9
6.1
Clinician involved in management .......................................................................................... 9
6.2
Best practice treatment and frequency of intervention ......................................................... 9
7 Huntington’s disease ..................................................................................................................... 11
7.1
Clinician involved in management ........................................................................................ 11
7.2
Best practice treatment and frequency of intervention ....................................................... 11
8 Arthritis ......................................................................................................................................... 13
9 Chronic fatigue syndrome ............................................................................................................. 14
9.1
Clinician involved in management ........................................................................................ 15
9.2
Best practice treatment and frequency of intervention ....................................................... 15
10
Chronic pain .............................................................................................................................. 16
11
Amputation ............................................................................................................................... 17
11.1 Clinician involved in management ........................................................................................ 17
11.2 Best practice treatment and frequency of intervention ....................................................... 18
12
References ................................................................................................................................ 20
2 Summary
• Information provided has been obtain from a rapid review of the literature. This includes
best practice guidelines, systematic reviews from the Cochrane Collaboration and other high
quality meta-analyses and reviews.
• The personal circumstances, goals of each individual, and severity of the disease impacts the
level of intervention required. Therefore, it is often not possible to provide an exact number
of hours required for each intervention. This is reflected in the literature as studies
investigating the same intervention often deliver it at a different frequency, leading to a lack
of agreement around gold standard levels.
• If the agency requires precise numbers around how many hours of intervention are useful
per clinician they will need to commission systematic reviews of each type of intervention
delivered, across various disease severities. This is a substantial tasks. Current literature
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focuses on the effectiveness rather than the intensity of intervention. The level of
intervention is often decided by the allied health professional looking after the patient.
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9 Chronic fatigue syndrome
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9.1
Clinician involved in management
In most cases, a GP should be able to diagnose chronic fatigue syndrome (CFS). However, if, after a
careful history, examination and screening investigations, the diagnosis remains uncertain, the
opinion of a specialist physician, adolescent physician or paediatrician should be sought [31].
Other non-medical professionals include:
• Physiotherapists
• Occupational therapists
• Psychologists
• Social workers
• Dieticians
9.2
Best practice treatment and frequency of intervention
Care should be provided to people with CFS using a coordinated multidisciplinary approach. Based
on the person’s needs, include health and social care professionals with expertise in the following
[31, 32]:
• self-management strategies, including energy management
• symptom management
• managing flares and relapse
• activities of daily living
• emotional wellbeing, including family and sexual relationships
• diet and nutrition
• mobility, avoiding falls and problems from loss of dexterity, including access to aids and
rehabilitation services
• social care and support
• support to engage in work, education, social activities and hobbies
No detailed information could be sourced around how many hours are required per clinician for
each of these approaches. It is clearly stated that service providers should be “adapting the timing,
length and frequency of all appointments to the person’s needs” [32].
There is still little evidence to support any particular management or intervention for CFS in primary
care that can provide an effective early intervention [33]. The only two evidence based therapies
recommended by NICE are:
• Cognitive Behavioural Therapy
o Five to 16 sessions. Sessions ranged from 30 minutes to 150 minutes [34]
o People with CFS should not undertake a physical activity or exercise programme
unless it is delivered or overseen by a physiotherapist or occupational therapist who
has training and expertise in CFS [32].
o
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• Exercise Therapy
o Duration of the exercise therapy regimen varied from 12 weeks to 26 weeks
o three and five times per week, with a target duration of 5 to 15 minutes per session
using different means of incrementation, often exercise at home [35]
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31.
Working Group of the Royal Australasian College of Physicians. Chronic fatigue syndrome.
Clinical practice guidelines--2002. Med J Aust [Internet]. 2002 May 6; 176(S9):[S17-s55 pp.].
32.
National Institute for Health and Care Excellence (NICE). Myalgic encephalomyelitis (or
encephalopathy)/chronic fatigue syndrome: diagnosis and management. 2020. Available from:
https://www.nice.org.uk/guidance/gid-ng10091/documents/draft-guideline.
33.
Hughes JL. Chronic Fatigue Syndrome and Occupational Disruption in Primary Care: Is There
a Role for Occupational Therapy? British Journal of Occupational Therapy [Internet]. 2009
2009/01/01; 72(1):[2-10 pp.]. Available from: https://doi.org/10.1177/030802260907200102.
34.
Price JR, Mitchell E, Tidy E, Hunot V. Cognitive behaviour therapy for chronic fatigue
syndrome in adults. Cochrane Database of Systematic Reviews [Internet]. 2008; (3). Available from:
https://doi.org//10.1002/14651858.CD001027.pub2.
35.
Larun L, Brurberg KG, Odgaard-Jensen J, Price JR. Exercise therapy for chronic fatigue
syndrome. Cochrane Database of Systematic Reviews [Internet]. 2019; (10). Available from:
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