Greater Glasgow & Clyde Group Of

Greater Glasgow & Clyde Group of

Allied Health Professionals

Guidance on “Good Practice” for the provision of 24 Hour Postural Management

2009

Issued November 2009

Review date November 2011

Contents

Background...... 3

Introduction...... 4

Why is postural management needed...... 4

Who is involved?...... 5

A.Patient selection/Children at risk...... 5

B.Assessment of Posture and Function and Outcome Measures...7

A.Goal setting...... 9

D.Postural Management Plan...... 10

Appendix 1

Postural Management Plan: Guidance Notes...... 11

Appendix 2

Spine Survey and Seating Protocol...... 12

Appendix 3

Example – Postural Management Plan Template...... 13

Appendix 4

Example – Photo Consent Form...... 15

Appendix 5

Example – Movement and Posture Passport...... 16

Appendix 6

Sources of Additional Information...... 10

Contacts:

Janice Clark , Lead Paediatric Physiotherapist, South Glasgow CHCP’s

Robert Greig, Manager, Paediatric Orthotic Service RHSC, Glasgow

Jennifer Lunan, Highly Specialist Physiotherapist, Acute and East Glasgow CHCP

;

Fiona McGrane, Highly Specialist Physiotherapist, Clyde

Laura Wiggins, Lead Paediatric Physiotherapist, North Glasgow CHCP

;

Guidance on “Good Practice” for the provision of 24 Hour Postural Management

Background

This guidance is targeted at Allied Health Professionals involved in the management of children with motor disorders where postural management may be an appropriate management strategy.

Although Postural management is a key strategy for children with neuromuscular disorders, therapy management may differ and there are separate care pathways for this condition.

Postural management is defined as:

“A postural management programme is a planned approach encompassing all activities and interventions which impact on an individual's posture and function. Programmes are tailored specifically for each child and may include special seating, night-time support, standing supports, active exercise, orthotics, surgical interventions, and individual therapy sessions.”

Tina Gericke. Developmental Medicine and Child Neurology. London: Apr 2006. Vol. 48 (4); p 244

This is a consensus based guidance on good practice for the provision of postural management programme for children from birth to 18 years with bilateral cerebral palsy and other motor disorders including acquired brain injury,spinal injury,Arthrogryposis and spina bifida.

Postural Management Working Group: the group was set up to consider the key questions:

Which children require 24 hour management – the at risk group
What are the most appropriate outcome measures to identify this population and to monitor the outcome of interventions with 24hour postural management?
What is the most effective method of implementing a management strategy which requires input from several services?
Do families perceive a benefit from delivery of this service by staff following an agreed pathway?

Produced with the support of:Clinical Governance support Unit;

Guidance on “Good Practice” for the provision of 24 Hour Postural Management1

2009

Introduction

Why is Postural Management needed?

Postural management is a programme of activity and controlled positioning, which manages a child’s posture. It enables a child to be comfortable in a sitting, lying, standing or moving position. Children that are comfortable are more able to learn and carry out normal daily activities.1

Postural management can be used to favourably alter movement experience and offers consistent sensory input.

The scientific literature supporting the use of postural management (PM) is limited and is predominantly based on populations of children with cerebral palsy. However, there is a wealth of support for PM based on clinical experience and the views of those working closely with children at risk of adverse posture.

Reported benefits of PM include:

Introduction of a postural management programme before the development of hip subluxation with positioning in lying, sitting and standing can reduce hip subluxation.2
Improved bone density.3
Improved access and participation in education.4
Weight-bearing programmes for children in GMFCS levels IV and V utilise a range of equipment to facilitate more upright posture in a variety of positions; some of these provide limited weight-bearing but encourage activity and experience in postures other than lying and sitting.
Weight bearing programmes may delay progression of lower limb deformities and scoliosis, also possibly improving respiratory function (preventing aspiration) and bowel/bladder function (urinary drainage and reducing constipation). There are also potential social and behavioural benefits if the experience is enjoyed, and if the posture facilitates improved social interaction.5 (p10)
Improved comfort and reduction of pain.
Musculo-tendinous contractures can be reduced by stretching for 5- 7 hours daily. This may require the use of day and/or night positioning equipment.6
Facilitation of communication, cognitive & functional skills.1

Spinal orthoses may reduce the rate of progression of scoliosis by reducing the deforming forces on the spine; hence delaying the timing of surgery until cessation of growth.

By stabilising trunk posture, they may provide other substantive benefits, including improved head control enabling the use of head switches and improving view perspective and/or upper limb function, and social interaction. Spinal orthoses can be used in conjunction with a seating system.5

References:

Gericke, T. 2006. Postural management for children with cerebral palsy: Consensus statement. Developmental medicine and child neurology. vol. 48 (4), p 244.
Pountney T, Mandy A, Green E, Gard P, Retrospective analysis of hip migration percentage in cerebral palsy. 2001
Caulton et al. 2004. A randomised controlled trial of standing programme on bone mineral density in non-ambulant children with CP. Arch Dis Child, 89, p131-135.
Dabbs, H, Richardson, M, & Harrison, C. 2004. The delivery of postural management programmes in special schools – Joint Health Education Review - Gericke, T. 2006. Postural management for children with cerebral palsy: Consensus statement. Developmental medicine and child neurology.Vol. 48 (4), p 244.
ISPO Recent Developments in Healthcare for Cerebral Palsy: Implications and Opportunities for Orthotics
APCP Evidence Based Practice in Paediatrics: hip subluxation and dislocation in children with cerebral palsy. 2001

Who is Involved?

Patient Selection/Children at Risk

Children with low levels of physical ability including persistent asymmetry of posture and an inability to walk independently are at greatest risk of developing hip subluxation.1
Asymmetrical activity of the muscles surrounding the hip and lack of load bearing increases the risk of subluxation and dislocation
The risk of scoliosis appears to be higher for non-ambulant children; therefore those in GMFCS levels IV and V are like to be at most risk for developing scoliosis.2
Changes in muscle and bone occur in response to growth and biomechanical forces. Muscle lengthening follows bone growth. Children with asymmetric postures are at risk of lengthening and shortening of opposing muscle groups and the development of joint contractures and boney deformity.

Children who do not achieve symmetrical lying at 3 months, sitting at 8 months and standing at 12 months, may be atgreater risk of abnormal musculoskeletal development
Children with the following impairments or conditions may benefit from postural management

References:

APCP Hip subluxation and Dislocation in children with Cerebral Palsy. 2004
ISPO Recent Developments in Healthcare for Cerebral Palsy: Implications and Opportunities for Orthotics. 2009 p10

B. Assessment of Posture and Functionand Outcome Measures

What is an Outcome Measure (OM)?

It measures change attributable to an intervention, thus changes in the individual’s status can be identified and attributed to the intervention aimed at influencing that status.
It should be relevant to the aims and focus of the intervention.
Its selection and implementation is critically dependent on an adequate understanding, from the outset, of the practical application of the identified measure.

What is the Main Purpose that the Selected OM Should Achieve?

To judge the effectiveness of an intervention –

Does it work in the ‘real’ world?

Does it reduce the ‘risks’ to the child/young person?

To judge the efficiency of an intervention –

What are the ‘costs’ of achieving the intervention?

To enable quality monitoring and service development.

Specification of the ‘Ideal’ OM

Potentially useful in the clinical, school and home settings.
Meets the needs of the therapist.
Feasible and practical.

Applicable.
Reliable and Valid.
Responsive/Sensitive to change.
Not too time consuming to complete.
Easy to complete, with easy to apply rating scales (where one is included).
Training requirements practical and achievable.
Rational for using the tool easy to explain to parents/carers.

‘Testing’ of an OM should focus on assessing:

The feasibility and practicality.

The applicability.
The potential usefulness in the setting where it is being used.

Assessment

World Health Organisation’s International Classification of Functioning, Disability and Health (ICF).

The ICF reflects the interactiverelationship between health conditions and contextual factors such as environment and social situation. It promotes a shift in language from negative terms such as impairment, disability, and handicap to the neutral terms body function and structure, activity, and participation. It encourages us to think beyond fixing impairments to placing equal value on promoting functional activity and enabling participation

Health care providers are encouraged to use the ICF model to guide the selection of measurement tools both to inform goal setting and decisionmaking processes and to determine meaningful outcomes. The outcomes that we measure need to be multidimensional, to encompass the impactof what we offer in treatment at different levels of body function and structure, activity, and participation.1

Ideally assessment should include both systems and participation measures.

Systems measure / Activity Measure / Participation measure
ROM
ASROMM / GMFM / COPM
Tone:
Ashworth/modified
Tardieu/modified
Height, Weight / GAS
QUEST
MACS / Quality of life
Sleep diaries
COSA
PedsQL
Muscle power MRC / Gait analysis
Selective motor control / Timed walk
Timed up and go / Admission to hospital
Pain scales
Pressure Mapping
Photographs
Antibiotic prescription / Chailey
Pedi

Recommendations:

References:

The World Health Organization International Classification of Functioning, Disability and Health: A Model to Guide Clinical Thinking, Practice and Research in the Field of Cerebral Palsy. Peter Rosenbaum and Debra Stewart, 2004 Elsevier Inc.

A. Goal Setting

“Individually-tailored postural management programmes are helpful for children with bilateral CP to facilitate communication, cognitive andfunctional skills, and enhance participation. Postural management programmes aim to increase children's comfort and may reducedeformity.”

Consensus statement

A goal should be defined as a standard of activity, probably but not necessarily motor, against which an observation of the child’s performance can be quantified. Aims differ from goals in that they reflect the general direction of change in the child’s performance and do not define achievement with any measurable precision.1

Goals provide structure for intervention and should be meaningful to the child and their families. They should be Specific, Measurable, Achievable, Realistic, and Timed (SMART)

Goal setting should be a collaborative process involving the child,parents and carers, nursery and school teachers and healthcare professionals Goals should be appropriate to the child’s age and consider the environment at home, respite provision and school.

Guidance on “Good Practice” for the provision of 24 Hour Postural Management1

2009

D. POSTURAL MANAGEMENT PLAN

Guidance on “Good Practice” for the provision of 24 Hour Postural Management1

2009

Appendix 1

POSTURAL MANAGEMENT PLAN: GUIDANCE NOTES

STAGE 1
IDENTIFY NEED FOR POSTURAL MANAGEMENT / STAGE 2
POSTURAL ASSESSMENT / STAGE 3
IDENTIFY RELEVANT OUTCOME MEASURES / STAGE 4
POSTURAL MANAGEMENT AIMS & GOALS / STAGE 5
PLAN
Is child at risk? eg:

GMFCS level
altered muscle tone
muscle imbalance
developmental delay
reduced core stability
muscle weakness

Who identifies risk? eg:

Paediatrician
Consultant
Therapist
Parent

Discuss with parent/ child need for postural management
Obtain consent to continue with postural management process / Assessment of child/ young person eg:

sitting posture
standing posture
preferred sleeping posture
voluntary movement
functional ability

MEASUREMENTS eg:

Goniometry - ROM
Tape measure
X-Ray - hip migration/ Cobb angle
Manual muscle testing – muscle power
Modified Ashworth Scale or Tardieu Scale – Tone

/ A range of outcome measures are available for use eg:
OBJECTIVE:

Gross Motor Function Measure (GMFM)
Chailey Levels of Ability

SELF/ CARER REPORT:

Paediatric Quality of Life Inventory (PedsQL)
Canadian Occupational Performance Measure (COPM)
Child Occupational Self Assessment (COSA)

/ GENERAL AIMS:

Promote symmetrical posture/ delay or reduce contracture development
Reduce pain
Provide comfort and pressure relief
Promote mobility
Enable inclusion
Facilitate communication
Promote good quality of life
Apply to child/ young person’s home, school & community

SPECIFIC GOALS:

SMART (Specific, Measurable, Achievable, Relevant/ Repeatable, Timed)
Jointly agreed with carer and child/ young person
Must guide therapeutic intervention
Review within agreed time scale

/ THERAPY INPUT: eg

Promote symmetrical standing/ sitting
Promote symmetrical sleeping posture
Promote positional change
Promote mobility and function

IDENTIFY RELEVANT EQUIPMENT: eg

Specialist seating
Sleeping systems
Standing equipment
Orthoses (AFOs etc)
Functional aides & appliances

ADVICE & TRAINING: eg

Parent/ carer
Child/ young person
Education staff
Support staff

REFERRAL: eg

Wheelchair & seating services
AHPs
Medical review e.g. medication
Orthopaedic review e.g. botox/ surgery
School pupil support

Guidance on “Good Practice” for the provision of 24 Hour Postural Management1

2009

Appendix 2

Guidance on “Good Practice” for the provision of 24 Hour Postural Management1

2009

Appendix 3

Example Postural Management plan template

Date
Name/
Identifier
GMFCS
Goal
Outcomes
Therapeutic Interventions
Other Management Strategies
Equipment - Assessment and Provision
Lying
(Daytime) / AssessedProvided
NTPM / AssessedProvided
Sitting / Assessed Provided
Standing / AssessedProvided
Walking / AssessedProvided
Wheelchair / AssessedProvided
Orthosis / AssessedProvided
Other

Appendix 3

Example Postural Management plan template (contd)

Profession / Contact / Involvement (related to postural management )
Medical
Community Paediatrician
Paediatric Neurology
Orthopaedic
Orthopaedic/Spinal
Respiratory
Nursing
School
Other
Physiotherapy
Occupational therapy
Speech & Language therapy
Eating and Drinking
Orthotic
Wheelchair/Bioengineering
Dietician
Education

Comments:

Appendix4

Example Photo consent form

Children & Young Peoples Specialist Services

VIDEODIGITAL PHOTOGRAPHY

I agree that the images of my child ______

May be used in the following:(Please tick appropriate box)

Teaching within the health centre environment

Publication in Scientific journal / text book

As part of a computerised CD slide presentation

Published on the internet

I understand that the images will be disguised to protect my child’s identity.

I have received a full explanation from ______

Date: ______

Signature of parent / guardian: ______

Signature of patient : ______

Signature of Doctor or other Health Care professional: ______

Position of Doctor or Health Care professional : ______

Appendix 5

Example Movement and Posture Passport

Standing: Photo of child using equipment

Age when standing is commenced

Benefits of standing

Activities to encourage

Moving and handling information

Precautions

Sitting: Photo of child positioned in seating options

Age when sitting is commenced

Support required – relate to specific activates if

appropriate

Moving and handling information

Precautions

Sleeping: Photo of positions for sleeping

Equipment in use and benefits and precautions’

Moving Around

Description of level of ability and equipment in use to support activities

Moving and handling information

Orthosis(Example Text; picture of orthoses and describe purpose and correct use)

A spinal orthosis is a brace designed to control the movement of the back

The brace should be put on with your child lying down on their back

The brace should be worn for most of the day

When you remove your child’s brace, always check his or her skin.

Movement Programmes: Use photos to illustrate, Indicate where further information can be obtained

Activities

Information on the child’s social and recreational activities

Appendix 6

Sources of Additional Information

Scottish Postural Management Network

The Scottish Posture and Mobility Network (SPMN) is an organisation that aims to advance the education of persons involved in the provision of posture and mobility services for people with physical disability, illness or impairment in Scotland.

Association of Paediatric Chartered Physiotherapists (APCP), publications

Physiotherapist working with children
Paediatric outcome measures
Hips in children with C.P

NHS Purchasing and Supply Agency, Centre for Evidence Based purchasing: Buyers Guide, Night time positioning equipment for children CEP 08030

Provides information on 6 commercially available NTPME systems, Technical, Operational, Economic considerations, Purchasing profiles and market reviews.

Chartered Society of Physiotherapy interactive network:

Various content including

The North West Group of Paediatric Physiotherapist and Childrens Occupational Therapists:

Good practice Guidelines to 24 hour Postural Management, 2008

North Devon’s Integrated Care Pathway for 24 hour Postural management

MHRA 01459; an Evaluation of Standing frames for 8 to 14 year olds 2004

International Society for Prosthetics and Orthotics (ISPO)

'The Chailey Approach to Postural Management'

Consensus Statement on Hip Surveillance for Children with Cerebral palsy

CanChild Centre for Disability research

Information on Outcome measures

Guidance on “Good Practice” for the provision of 24 Hour Postural Management1

2009