Research – Therapy Best Practice | FOI document library

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 s22(1)(a)(ii) - irrelevant mate - Assistant Director (TAB) s22(1)(a)(ii) - irrelevant material Requester(s) - Senior Technical Advisor (TAB) Researcher s22(1)(a)(ii) - irrelevant material - Research Team Leader (TAB)

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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. s22(1)(a)(ii) - irrelevant material

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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] s22(1)(a)(ii) - irrelevant material

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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.].

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.

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.

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: s22(1)(a)(ii) - irrelevant material

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