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Glossary

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24 hour positioning

[Comprehensive night and day programs which involves pressure care and positioning in sitting, lying and standing.] These carefully planned programs aim to enhance comfort, function, communication and ability to participate for people with cerebral palsy. The programs may involve special seating, sleep positioning systems, standing frames, wheelchairs, splints/orthoses, surgery and therapy. The text in brackets should be in the rollover and the remainder provides the full definition.

A


Adaptive equipment

Specialist equipment or devices to adapt or modify task demands, to improve independence. Examples include: i) Mobility aids such as wheelchairs, powered wheelchairs, walkers, scooters and vehicle modifications and ii) Environmental control systems such as alternative switching devices.

Adolescents

13-17 years old.

Adults

18 years and older.

Alternative and augmentative communication (AAC)

Methods of communication which supplement or replace oral speech to improve overall communication of people with speech difficulties. AAC can be aided or unaided. Aided AAC uses external items (aids) to assist communication. Aided AAC can be “low tech” and use pictures or symbols arranged in communication books and boards. Alternatively “high tech” AAC includes technology such as speech-generating devices. Unaided AAC involves the person using sign language or gesture to communicate

Aspiration

Food, drinks or other foreign material “going down the wrong way” – breathed into the airways/lungs.

Assistive technology

See Adaptive Equipment.

Ataxia

Jerky, poorly coordinated movement; ataxic cerebral palsy.

Athetosis

A form of dyskinetic cerebral palsy where movements are involuntary and slow and writhing; athetoid cerebral palsy.

B


Balance

Static balance refers to the ability to maintain one’s balance when stationary. Dynamic balance is the ability to maintain one’s balance while the body is in motion or changing from one balanced position to another.

Bimanual

Bimanual means using two hands together. A bimanual activity is one that needs two hands to complete.

Botox®

See Botulinum toxin A

Botulinum toxin A (BoNT-A)

An anti-spasticity medication used for children and adults with cerebral palsy. It is injected into muscles to temporarily decrease unwanted muscle tightness. Botulinum toxin A is also known by trade names including BOTOX® and Dysport®.

C


Case studies

Evaluates the outcomes of individual participants or a small number of individuals who receive an intervention. Results are generally reported for each individual separately rather than collating data across individuals. Case studies are different from single case experimental design studies (single system design studies).

Case-series

Evaluates the outcomes of an intervention in a single group of participants. Measurements of interest are usually taken before each person starts treatment and compared with results taken after treatment.

CFCS

Communication Function Classification System (CFCS) – classifies severity of everyday communication of people with cerebral palsy.
CFCS Level I
Effective Sender and Receiver with unfamiliar and familiar partners.
CFCS Level II
Effective but slower paced Sender and/or Receiver with unfamiliar and/or familiar partners.
CFCS Level III
Effective Sender and Receiver with familiar partners.
CFCS Level IV
Inconsistent Sender and/or Receiver with familiar partners.
CFCS Level V
Seldom effective Sender and Receiver even with familiar partners.

Cohort studies

A group of participants are assessed before and after an intervention to measure any change which might be attributed to intervention.

Communication participation

Someone’s ability to join in and take part in everyday interactions with other people.

Constraint-induced movement therapy

An intervention used with children with hemiplegic CP. The unaffected hand is restrained using a mitt, splint or cast, while therapy is completed to improve the use of the affected (hemiplegic) hand.

Contracture

Shortening of muscles which can lead to loss of movement at a joint, loss of function and sometimes pain.

D


Diplegic cerebral palsy

Both legs are affected more than the arms.

Dysphagia

Difficulty with swallowing.

Dystonia

A form of dyskinetic cerebral palsy where movements are involuntary and involve a sustained posture or twisting and repetitive movements.

E


Expressive communication

Ability to send messages to others using speech, gestures, signs or communication devices.

F


Fibre optic endoscopic evaluations of swallowing (FEES)

Fibreoptic Endoscopic Evaluation of Swallowing (FEES) is an instrumental assessment tool used to evaluate swallowing function and guide the treatment of swallowing disorders (dysphagia). A very small tube with a camera and light on the end (called an endoscope) is gently inserted through the nose into the throat. The endoscope is flexible and connects to a computer and video monitor. The person is given some things to eat and drink. They may be colored with food coloring so that they are easier to see. The speech pathologist and doctor can see a picture of the throat and what happens during a swallow on the computer screen.

Functional ability/independence

An individual’s ability to perform activities of daily living, to function in daily life.

Functional communication

The ability of an individual to understand and be understood in a real situation with another person.

G


Gastro-oesophageal reflux

This occurs when the acid from the stomach leaks up into the food pipe (oesophagus). It can cause pain, discomfort, difficulty swallowing and sometimes more severe complications. It is also called GORD, gastro-oesophageal reflux disease or just ‘reflux’.

General Movements Assessment

An assessment which is accurate in predicting whether an infant has cerebral palsy. Infants are born with spontaneous whole body movements (called general movements). These general movements lose their unique character if an infant’s nervous system is impaired. Trained health professionals use the General Movements Assessment to measure the quality of an infant’s general movements to see whether the movements are normal or abnormal. The presence of specific abnormal general movements is accurate in predicting whether an infant has cerebral palsy. The General Movements Assessment is used during the preterm period right up to 20 weeks post term age. This early identification of the risk of cerebral palsy ensures intervention and therapies can start early.

GMFCS

Gross Motor Function Classification System (GMFCS) – classifies severity of mobility difficulties of children and adolescents with cerebral palsy.
GMFCS Level I
Walks without limitations in the home and community, climbs stairs and can run and jump, difficulties with speed and coordination.
GMFCS Level II
Walks with limitations, difficulties with long distances and uneven surfaces, uses a railing for climbing stairs, limited running and jumping.
GMFCS Level III
Walks using a hand-held mobility device such as crutches or walking frame, may use wheeled mobility for long distances.
GMFCS Level IV
Usually relies on wheeled mobility with assistance, may use powered mobility, usually needs special seating and assistance with transfers.
GMFCS Level V
Usually transported in a manual wheelchair, requires specialised seating and full assistance for transfers.

Goal directed training

Involves a person with cerebral palsy practising specific tasks and activities, which have been chosen as goals to achieve following intervention.

Gross motor skills

Are movements using the large muscles of the body. In babies these include holding up the head, rolling, learning to sit, crawling, pull to a standing position and walking. In older children and adults, gross motor skills are walking, running, stair climbing, hopping, playing sports etc.

H


Hand held dynamometry

A portable device, held by the professional conducting the assessment, which measures strength. The person being tested squeezes, pushes or pulls against the device which registers the force applied.

Hemiplegic cerebral palsy

Also called unilateral cerebral palsy. The arm and leg on one side of the body are affected.

Hip displacement

Hip displacement refers to abnormal positioning of the thigh bone (femoral head) in the hip bone (acetabulum). Pain, loss of movement and reduced function often result from hip displacement. Hip migration percentage is one measure of how far the thigh bone is displaced from the normal position in the hip. Click here to see the Australian Hip Surveillance Guidelines for Children with Cerebral Palsy 2014.

Hip surveillance

Children with cerebral palsy are at risk of developing hip displacement. Early detection is part of the strategy for preventing hip difficulties. Hip surveillance is the process of monitoring children, starting early and continuing over time, to identify the early indicators of hip displacement. Click here to see the Australian Hip Surveillance Guidelines for Children with Cerebral Palsy 2014.

Hip stability and hip migration

Unstable hips can result in pain and loss of movement and function.  Hip migration is a measure of how far the leg bone is out of alignment with the hip joint.

Historically controlled studies

Outcomes of a group of people who receive an intervention are compared with those of a group of people whose outcomes were measured in the past after a different, or no, intervention.

Hypotonia

The muscles and limbs feel floppy; hypotonic cerebral palsy.

I


Infants and toddlers

0-3 years old.

Intellectual ability

A person’s thinking skills - ability to understand ideas, learn and solve problems. People with intellectual disability have difficulty with intellectual functioning which may influence learning, communication, social and daily living skills. Intellectual disability may be mild to very severe.

Intellectual disability

People with intellectual disability have difficulty with intellectual functioning which may influence learning, communication, social and daily living skills. Intellectual disability may be mild to very severe.

International Classification of Functioning, Disability and Health (ICF).

The ICF was developed by the World Health Organisation (http://www.who.int/classifications/icf/en/) to describe and organise information on health and disability. Assessments and interventions are classified according to these categories. The categories of the ICF are:
  • Body function and structure - the anatomy and physiology/psychology of the human body.
  • Activity - a person’s ability to complete tasks or activities.
  • Participation - a person’s is involvement in all areas of life.
  • Environment - aspects of a person’s environment that help or hinder health a person’s ability to participate in daily life - such as family, work and the social and physical community that a person lives in
  • Personal factors – such as personality, motivation, and learning ability which may influence a person’s health and disability.

L


Levels of evidence

Different types of studies which evaluate the effectiveness of interventions are considered to form a hierarchy. Generally we rely more on Level I and II studies to inform about the effectiveness of interventions than lower levels of evidence (III, IV and V).

M


MACS

Manual Ability Classification System (MACS) – classifies severity of upper limb impairment: how children with cerebral palsy use their hands to handle objects in daily activities in the home, school, and community settings.
MACS Level I
Handles objects easily and successfully.
MACS Level II
Handles most objects but with somewhat reduced quality and/or speed of achievement.
MACS Level III
Handles objects with difficulty; needs help to prepare and/or modify activities.
MACS Level IV
Handles a limited selection of easily managed objects in adapted situations.
MACS Level V
Does not handle objects and has severely limited ability to perform even simple actions.

Mechanism-based reasoning

Expert opinion, not necessarily based on research evidence. May also be evidence inferred from a related mechanism, such as based on animal or laboratory studies.

N


Neurodevelopmental therapy

Hands on approach which addresses posture and movement problems aiming to improve functional, everyday activities.

Non-randomized controlled cohort/follow-up study

Participants are allocated to 2 or more treatment or control groups but not in a randomised way.

O


Observational study

Researchers observe the outcomes of groups of people who have an intervention and those who do not. The researchers do not allocate people to interventions.

Oral and intrathecal baclofen

Baclofen is medication with muscle relaxing properties used to reduce spasticity or dystonia. Baclofen can be taken orally or through a surgically implanted pump which places the medication into the space around the spinal cord. These pumps are called intrathecal pumps or baclofen pumps.

Orthoses

See splints.

Orthotist

Often called orthotists/prosthetists, these health professionals prescribe, design, fit and monitor orthoses and prostheses. See The Australian Orthotic Prosthetic Association for more information.

Outcome measures

Different ways to evaluate the effectiveness of an intervention.

P


Participant

The people, subjects or patients who are in a study.

PICO question

A question used to carefully devise an efficient strategy to search for research evidence.

Preschoolers

4-6 years old.

Q


Quadriplegic cerebral palsy

Sometimes called bilateral cerebral palsy. Both arms and legs are affected. Muscles of the neck, trunk, face and mouth may also be affected.

Quality of evidence

Overall quality rating (high, moderate, low, very low) given to 1 or more studies used to determine whether an intervention is effective .

Quality of studies

Each study is appraised to determine whether it is of high quality and the results can be trusted, or of low quality with stronger risk of bias.

R


Randomised controlled trial (RCT)

A type of research study where participants are randomly allocated (by chance) into one or more treatment groups or control (no treatment groups). Outcomes are measured before and after treatment to work out if one treatment is more effective than another, or more effective than a control group. Randomly allocating participants is to achieve groups with similar characteristics, so that the only expected differences between groups is the treatment they have receive. Any differences between groups after treatment are therefore considered to be due to the treatment.

Risk of bias

Bias is where aspects of the design of a study or the way the study is carried out, in addition to the intervention itself, influence the results. .

S


Serial casting

Involves applying a series of casts in succession to gradually increase range of motion of tight or contracted muscles. Casts are applied by occupational therapists or physiotherapists using synthetic or plaster of Paris bandages which, when applied, set rigidly to support the casted limb in the required position.

Single case experimental design studies

Individuals serve as their own controls. Outcomes are measured at multiple time points during two or more phases. For example, in the most simple "A-B" design, the "A" phase represents baseline and multiple data points collected during this phase determines status without intervention. During the "B" phase, an intervention is introduced. Multiple data points collected during this phase are compared to data in the "A" phase to identify whether the intervention has resulted in a change in status.

School aged

7-12 years old.

Selective dorsal rhizotomy

Surgery to the lower part of the spinal cord used with some children with cerebral palsy to reduce spasticity in the legs. After surgery children participate in a physiotherapy programme to assist with improving movement and walking.

Spasticity

Muscles feel stiff and tight, movement may be difficult.

Splints and orthoses

Devices used to support, stretch or immobilise body parts. Splints are typically used on wrists and hands, ankles and knees of people with cerebral palsy with the aim of improving range of available movement and improving function.

Systematic review

An appraisal and summary of all available research studies on a treatment. A good quality systematic review of randomised controlled trials is the best evidence to inform about the effects of intervention. A systematic review may include a meta-analysis, which is where the results from individual studies are analysed statistically.

T


Type of cerebral palsy

Diplegic cerebral palsy
Both legs are affected.
Hemiplegic cerebral palsy
Also called unilateral cerebral palsy. The arm and leg on one side of the body are affected.
Hypotonia
The muscles and limbs feel floppy; hypotonic cerebral palsy.
Quadriplegic cerebral palsy
Sometimes called bilateral cerebral palsy. Both arms and legs are affected. Muscles of the neck, trunk, face and mouth may also be affected.

Type of movement disorder

Ataxia
Jerky, poorly coordinated movement; ataxic cerebral palsy
Athetosis
A form of dyskinetic cerebral palsy where movements are involuntary and slow and writhing; athetoid cerebral palsy
Dystonia
A form of dyskinetic cerebral palsy where movements are involuntary and be involve a sustained posture or twisting and repetitive movements
Spasticity
Muscles feel stiff and tight, movement may be difficult

U


Unhelpful thoughts

Unhelpful thoughts and beliefs lead an individual to feel more anxiety, pain, distress, frustration or hopelessness and can include thoughts and beliefs such as “I can’t cope” or “this will never change”. Unhelpful thoughts and beliefs about pain can in turn worsen an individual’s pain experience.

V


Videofluoroscopic swallowing studies

This is a commonly used medical assessment of a person’s ability to swallow. In this test, an x-ray is taken of food and drink of different consistencies as it is swallowed. The food and drink has a substance added that shows up on the x-ray. The x-ray will show whether food/drink goes into the airway instead of the stomach. Food/drink which goes into the airway is thought to place a person at greater risk of aspiration pneumonia. The x-ray will also show which parts of the mouth and throat are not working well. The test results inform decisions about which textures of food/drink may be safest for the person to swallow. The source of this information was the American Speech-Language-Hearing Association. Videofluoroscopic Swallowing Study (VFSS).

U


Walking efficiency

The energy expenditure used for walking.

Y