The Winston Churchill Memorial Trust of Australia Report by ISABEL BAKER 2009 Churchill Fellow The Dr Dorothea Sandars Churchill Fellowship to investigate innovation in physiotherapy for children with acquired spinal cord injury I understand that the Churchill Trust may publish this Report, either in hard copy or on the internet or both, and consent to such publication. I indemnify the Churchill Trust against any loss, costs or damages it may suffer arising out of any claim or proceedings made against the Trust in respect of or arising out of the publication of any Report submitted to the Trust and which the Trust places on a website for access over the internet. I also warrant that my Final Report is original and does not infringe the copyright of any person, or contain anything which is, or the incorporation of which into the Final Report is, actionable for defamation, a breach of any privacy law or obligation, breach of confidence, contempt of court, passing-off or contravention of any other private right or of any law. Signed: Dated: 22/02/2010
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Report by ISABEL BAKER 2009 Churchill Fellow€¦ · Isabel Baker Churchill Fellow 2009 Acknowledgements As a sponsored Churchill Fellow, I gratefully acknowledge the late Dr Dorothea
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The Winston Churchill Memorial Trust of Australia
Report by ISABEL BAKER
2009 Churchill Fellow
The Dr Dorothea Sandars Churchill Fellowship to investigate innovation in physiotherapy for
children with acquired spinal cord injury
I understand that the Churchill Trust may publish this Report, either in hard copy or on the
internet or both, and consent to such publication.
I indemnify the Churchill Trust against any loss, costs or damages it may suffer arising out of
any claim or proceedings made against the Trust in respect of or arising out of the publication of
any Report submitted to the Trust and which the Trust places on a website for access over the
internet.
I also warrant that my Final Report is original and does not infringe the copyright of any person,
or contain anything which is, or the incorporation of which into the Final Report is, actionable for
defamation, a breach of any privacy law or obligation, breach of confidence, contempt of court,
passing-off or contravention of any other private right or of any law.
Major lessons ............................................................................................................................................................ 7
Data collection .......................................................................................................................................................... 9
The ASIA Standards examination & WeeSTeP ......................................................................................................... 10
Other clinical tools ................................................................................................................................................... 13
Arm girth: an anthropometric measure .............................................................................................................. 13
Medical photography of the growing spine ........................................................................................................ 13
Finding motor points for NMES – the water test ................................................................................................ 14
Prevention, proactive emergency care & piglets ....................................................................................................... 14
Life in motion – activity based rehabilitation ............................................................................................................ 17
Intensive gait training ............................................................................................................................................. 17
Gait training with additional sensory input ........................................................................................................ 19
Neuromuscular Electrical Stimulation ..................................................................................................................... 20 Drop foot stimulators.......................................................................................................................................... 20
Keeping it moving – other dynamic equipment & strategies .................................................................................. 24
Best position, best part of the day ............................................................................................................................. 26
Night time positioning ........................................................................................................................................ 26
A standing personal transporter ......................................................................................................................... 30
The problematic hip................................................................................................................................................. 32
World Wide Weehab – Rehab via the internet .......................................................................................................... 36
Major lessons Spinal cord injury in childhood is unique in its presentation and manifestation in the growing body. It can
impact on all aspects of development. Dedicated programs and rehabilitation facilities, such as Shriners
and Stoke Mandeville Hospitals and Kennedy Krieger Institute, offer expert knowledge, skills, specialised
equipment, surgical procedures and opportunity for peer interaction of affected children and families.
Clinical outcomes there are researched to advance knowledge and care.
A paradigm of activity-based rehabilitation and its science is influencing practice. Children may be
great beneficiaries of advancements in this area, in mitigating the devastating effects of spinal cord
injury on the growing body and harnessing potential in the immature nervous system. Evidence
substantiates positive health benefits but neurological recovery is variable and nominal. New
knowledge and technology is guiding anticipatory care and preventative strategies.
Strategies to optimise community integration and to support all areas of child development are
paramount to quality of life.
Highlights Being invigorated at two outstanding international conferences by a considerable array of state-of-
the-art scientific and clinical advancement in paediatric spinal cord injury and appreciating
interaction with inspiring, creative and highly respected international colleagues;
Experiencing firsthand the philanthropic Shriners network of world leading and exemplary staff;
Meeting Sir Hans Frankel at the ISCoS Conference opening ceremony in Palazzo Vecchio, Florence.
Recommendations & Implementation into Australia Adequately resourced specialist paediatric services should provide activity based therapies, education to
families and local service providers, specialist equipment and spinal specific group programs.
Acquired knowledge and skills will advance the Northcott Paediatric Spinal Outreach Service in NSW.
Proposed group programs will have multiple benefits. Web based strategies will be important.
Children with acquired spinal cord injury should be included in national data collection and research
initiatives. Low incidence and heterogeneous presentation may warrant international collaboration.
Selected tertiary paediatric facilities should be identified as centres of specialisation and motion
analysis facilities expand programs beyond gait and to a wider paediatric population.
Rehabilitation of complex and chronic paediatric conditions should be conducted by applying life
skill oriented and goal directed philosophies, in wellness environments. Dedicated children’s
rehabilitation centres and development of programs attached to existing services are desirable.
8 Isabel Baker Churchill Fellow 2009
Fellowship Itinerary
DATES LOCATION FACILITY KEY CONTACTS
19th
October & 30th
-
31st
October
Salisbury, Wiltshire, UK National Clinical FES (Functional Electrical Stimulation) Centre, Salisbury District Hospital
Ingrid Wilkinson, PT
Duncan Wood, PhD
21st
– 24th
October Florence, Tuscany, Italy International Spinal Cord Society (ISCOS) 48th
Annual Scientific Meeting
26th
– 29th
October Aylesbury,
Buckinghamshire, UK
Stoke Mandeville Hospital, National Spinal Injury Centre (NSIC)
Kirsten Hart, PT
Ebba Bergström, PT
5th
– 11th
November Vancouver, British
Columbia, Canada
British Columbia Children’s Hospital GF Strong (Adult Spinal Rehabilitation) Sunny Hill Children’s Health Care Centre (Children’s
rehabilitation) International Collaboration on Repair Discoveries
(ICORD), Blusson Spinal Cord Centre
Bonita Sawatsky,
A/Prof
12th
– 13th
November Saint Paul, Minnesota, US Gillette Children’s Specialty Healthcare Kath Roske, PT
14th
– 18th
November Chicago, Illinois, US Easter Seals Disability Services – (affiliated with Ability First Australia & Northcott Disability Services)
Shriners Hospitals for Children Chicago Rehabilitation Institute of Chicago
Ellen Harrington-
Kane, MS
Lawrence Vogal, MD
19th
– 25th
November Philadelphia,
Pennsylvania, US
Shriners Hospitals for Children Philadelphia
Christina Calhoun, PT
Randle Betz, MD
MJ Mulcahey, A/Prof
27th
November – 1st
December
Baltimore, Maryland, US Kennedy Krieger Institute (KKI) Karen Good, PT
2nd
– 5th
December Orlando, Florida, US Howard H. Steel Conference: Pediatric Spinal Cord Injuries & Dysfunction
7th
– 8th
December
Miami, Florida, US The Miami Project to Cure Paralysis Ryder Trauma Center, Holtz Children's Hospital &
Jackson Memorial Hospital Miami Physical Therapy Associates, Inc (Private
Practice) Miami Children’s Hospital
Kathleen Manella, PT
Gillian Hotz, A/Prof
Miriam Guanche, PT
Marlenne Burt, PT
9th
December Downey, Los Angeles, US Rancho Los Amigos National Rehabilitation Center Jan Furumasu, PT
11th
December Carlsbad, Los Angeles, US Project Walk Eric Harness
9 Isabel Baker Churchill Fellow 2009
Databases, classification & measurement
Data collection In Australia, little is recorded about the epidemiology of spinal cord injury acquired in childhood. While
the Australian Spinal Cord Injury Register (ASCIR) has taken the initiative to collate and publish data
from specialist spinal units, such information is incomplete and needs to be considerably expanded.
From this work, it is estimated that, in Australia, the age-adjusted incidence of childhood spinal cord
injury (SCI) is 14.9 cases per million (Cripps, 2009). Cases under the age of 15 are often omitted from
analysis due to a paucity of data. In Europe, the incidence of paediatric SCI is estimated to range
between 0.9 – 27 per million children per year (Augutis et al., 2006; Augutis & Levi, 2003a) and, in the
USA, 19.9 per million children per year (Vitale et al., 2006).
Children in Australia, with traumatic and non-traumatic SCI tend to be managed in a tertiary teaching
Children’s hospital. Many others with non-traumatic injuries may be managed elsewhere, as is the case
in adults (New, 2006).
Spinal cord injury is not a reportable condition in Australia or in the countries visited on my study tour.
Nonetheless, several of the facilities visited have been collating data on SCI for decades. I learnt of an
epidemiological and clinical data pool commenced in the 1970s from my host, Kirsten Hart,
physiotherapist (PT) at Stoke Mandeville Hospital, UK. This pool contains information on thousands of
children, such as anthropometric measures and medical photography. From this database, Ebba
Bergström, research physiotherapist, with whom I also conferred, completed her Masters of Philosophy
on “Childhood Spinal Cord Lesion: Its effect on skeletal development, growth and lung function – A
retrospective study” (Bergström, 1994), to offer insight and management recommendations that are
relevant today (Bergström et al., 2003; Bergström et al., 1999).
During an enlightening meeting with Lori Rutter, Nurse and SCI program coordinator at Shriners
Philadelphia, I was informed of the National Shriners Spinal Cord Injury database (Shrine Database) of
patients of the three Shriners Children’s Hospitals that specialise in spinal cord injury (Sacramento,
Chicago, Philadelphia). At Head office in Tampa, Florida, information is stored on injury, education
attendance (e.g. return to school post injury and type of education) and a range of clinical markers (e.g.
bowel and bladder management). Follow-up questionnaires on large samples are conducted annually to
determine effectiveness of intervention and to gain insight into this population. The earliest data
commence in the 1970s when the Shrine network expanded its mission to treating children with SCI
(McCollough, 2000). Recent publications convey trends from analysis of tens of thousands of patients
(e.g. (Shavelle et al., 2007). At the 2009 ISCoS conference, Dr DeVivo expressed the view that a
limitation in this database is that it is not population based and therefore that estimates of incidence
and prevalence cannot be made. In published work with Dr Vogel, data from both the Shrine Database
and the American National SCI Statistical Centre provide valuable insights into epidemiology of
childhood SCI in the US (DeVivo & Vogel, 2004).
10 Isabel Baker Churchill Fellow 2009
At the scheduled meeting of Members of the American Spinal Injury Society (ASIA) and experts in the
field in Copenhagen, May, 2010, Associate Professor Mary Jane Mulcahey from Shriners Philadelphia
and the panel aim to identify the most critical variables for a paediatric International Data Set. Current
ASIA International Data Sets are available at http://www.asia-spinalinjury.org/bulletinBoard/dataset.php.
During my visit to the Rick Hansen Institute (formerly SCI Solutions Network, Blusson Spinal Cord Centre,
ICORD), Dr Chris McBride, Director of the Translational Research Program, summarised the aims and
outcomes of the Institute. Of relevance here is the development of a novel technology platform for data
collection by the new National SCI Registry (http://rickhansenregistry.org). Currently the data collection
is limited to traumatically injured adults and when available, may have broader relevance for Australia
(e.g. children and non-traumatic injuries). The recently signed Memorandum of Understanding between
Australia New Zealand Spinal Cord Injury Network (ANZSCIN) and Rick Hanson Institute in Canada should
be a vehicle for collaboration.
The ASIA Standards examination & WeeSTeP At both ISCOS and Howard Steel 2009 conferences, the following key points, based on a large scale, high
quality reliability trial (Chafetz et al., 2009), were made in relation to children:
Motor and sensory examinations have utility for children as young as 6 years, with good to high
inter-rater reliability.
The ASIA exam should be reserved until a child reaches age 6 but the results be interpreted with
caution until the age of at least 8. A clinical estimate may be applied for children younger than 5
years. At age 5 a tester may attempt the exam within professional judgement.
The inter-rater reliability of the anorectal part of the exam is poor in children. The validity of this
part of the exam is questionable across all age groups. Results should be interpreted with
caution.
Cognition should be tested (informally) prior to engaging children in the exam. Language used
should be age appropriate (e.g. replace ‘sharp’ with ‘pointy’ during the sensory exam).
Children injured prior to being toilet trained may not understand instruction for the anorectal
exam. Modifications to instruction should be made accordingly.
The examiner must make provisions for presence of scoliosis, pelvic obliquity and hip dysplasia,
especially when testing dermatomes.
During my stay at Shriners Philadelphia, I completed the newly developed online training module
‘WeeSTeP’, which was pioneered by talented staff of the Shriners network and the American Spinal
Injury Association (ASIA). ‘WeeSTeP’ addresses considerations specific to children in the conduct of the
ASIA Standards exam and incorporates the latest research evidence of its use in children. It is available
at http://www.asialearningcenter.com with purchase of InSTeP (six module course for conducting the
ASIA Standards exam). The simple yet comprehensive instructions are supported by videos of clinical
CURRENT INVESTIGATIONS OF INTENSIVE GAIT TRAINING WITH ADDITIONAL SENSORY INPUTS
Researcher / Facility
Type of gait training
Dose Additional sensory stimulation
Proposed mechanism Provisional Outcomes
Andrea Berhman*, University of Florida and Brooks Rehabilitation
BWSTT & Overground (children)
60Rx (5 x 12 wks)
Auditory (acoustic startle response)
Intact reticulospinal tract
2/5 children recovered walking, 3/5 children improved in skills that were critical to function (e.g. trunk control)
Edelle Field-Fote & Kathleen Manella, The Miami Project to Cure Paralysis**
BWSTT & Overground (children)
40Rx (5 x 8 wks)
Sinusoidal Vibration using Power plate immediately prior to training, then hand held massager over tensor fascia lata ± common peroneal nerve stimulation during training
CPGs, Flexor withdrawal response
Improved walking speed with RGOs, improved trunk control & balance enabling reduced orthotic support at thorax
Katherine Pauhl, ICORD***
Robotics - Lokomat (adult)
36Rx (3 x 12 wks)
Resistance to lower limb swing (provided within the system)
CPGs, corticospinal tract Subject reports of improved walking patterns & distance in daily activities
* The Kids STEP (STepping Excites Plasticity), supported by Craig H Neilson Foundation. See
http://locomotor.phhp.ufl.edu/kidsstepstudy/
** Walking Training for Children with Incomplete Spinal Cord injury – Summer Camp Program
In another clinical session at KKI, NMES was used to evaluate the
suitability of a 4 year old for FES cycling, maintenance of muscle
bulk and skin health, ‘nourishing’ and ‘priming’ neural pathways.
The dual channel Empi 300PV™ (http://www.empi.com) is the
model of choice for partially innervated muscles, due to its
portability, multiple functions and external trigger capabilities. For
apparent denervated, or flaccid muscles, long duration pulses (1 ms) were applied using the ‘Swiss stim’
unit. While such pulse widths carry an inherent risk of tissue damage (e.g. burn), clinicians and patients
agreed on the advantages that this type of stimulation offers when no other options are available for
muscle contraction. Long pulse stimulation for this purpose has been available for decades but not
widely practised (Woodcock et al., 1999).
Keeping it moving – other dynamic equipment & strategies A prominent universal observation during my study tour was that people with SCI are engaged not only
in intensive, physically demanding programs but that they are frequently upright and involved in
dynamic (rather than static) and weight bearing /closed-chain activity.
Focussing on the nature and broad developmental needs of children, paediatric therapy in Australia (and
around the world) has traditionally emphasised standing programs, supported mobility (e.g. RGO
walking) and therapeutic play in a variety of physical positions and natural environments.
From my study tour, I deduce that the following concepts appear to influence innovative practice:
1. General SCI therapy makes use of traditional paediatric practice models such as standing
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46 Isabel Baker Churchill Fellow 2009
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