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									                                                       2010 CATEGORY AWARDS ENTRY
The Category Awards recognise the diverse ways in which excellent public health and healthcare is achieved. The
seven categories, which are based on the Department of Health strategic priorities, honour initiatives and services that
demonstrate excellence, innovation and quality.

 Organisation                   Royal Children’s Hospital Melbourne, Melbourne
 Entry contact person           Alison Wray
 Email                          alison.wray@rch.org.au
 CEO endorsed                   Yes

 Which Category Award are you entering?                                                    Tick one Award
  Delivering sustainable and effective healthcare services
  Improving access performance
  Improving quality performance                                                                    
  Reducing inequalities
  Prevention and promotion
  Responding to mental health and drug and alcohol service needs
  Responding to an ageing population

 Title of entry                 Surgical Management of Paediatric Dystonia

 Has this initiative previously been commended or
                                                                         No       No
 won a Victorian Public Healthcare Award


Dystonia is a severely disabling and painful condition where children are afflicted by sustained
muscle contractions causing twisting and repetitive movements and abnormal postures. This
causes severe pain and disability with communication, walking, hygiene, feeding and swallowing.
It also impacts negatively on the child’s socialisation, education and development and often
contributes to marginalisation of the child and family.

Children with dystonia may benefit from early rehabilitation and drug therapy, however many
children remain refractory to medication. Recent international experience has shown that surgical
intervention with either placement of deep brain stimulating electrodes or, for those not suitable
for stimulation, implantation of a spinal infusion device, can limit the debilitating dystonia and
allow significant improvements in quality of life for these children.

The team at The Royal Children’s Hospital (RCH) recognised the need to improve the quality of
life and care for these children and their families and worked to fund, initiate and establish a
Victorian surgical dystonia management program.

With support from New Technologies the service was established 3 years ago. It’s assessed 31
children and surgically treated 16. With multidisciplinary follow-up, review and data collection we
have shown significant improvement in family identified goals and in quality of life.

Planning and preparation
Children with dystonia have traditionally accessed parts of their care through many different
services at RCH, and with our care partners. The clinicians involved recognised what was lacking
were both surgical management options and coordinated care.

The team researched the literature and complied evidence of safety, efficacy and cost
effectiveness of the interventions and presented these to the RCH New Technologies committee
for independent assessment.

Having identified the clinical need and the efficacy of intervention, the team mapped out the
service provision and care pathways. The focus was on providing quality care in a family centered
approach and also reaching out to our community providers and RCH care partnerships to ensure
equal access to the service for our target population.


   1. Provide clear access to the service for referring clinicians (internal and community /
      external care providers) and for families, achieved by the appointment of the clinical nurse
      coordinator(CNC) as access point, and by education of stakeholders and families.
   2. Coordination of care to streamline and reduce families visits to RCH
   3. Establishment of care pathways and RCH guidelines for IntraThecal Baclofen (ITB)
   4. Multidisciplinary assessment and therapy planning
   5. Surgical treatment of appropriate candidates
   6. Establishment of the Complex Movement Disorder (CMD)server and database for safe
      and ethical storage of patent data (video stc)
   7. Education
          a. Child and family – information book and fact sheets on the service and therapies,
              and education session with the CNC
          b. Clincians – education sessions for RCH staff and for community providers in
              keeping with RCH partnership/linkage policies

Methods and implementation

Our key stakeholders for the service are the referring clinicians, the families and team members.
After discussing care needs with referring services (orthopaedics, neurology (RCH and Monash
Medical Centre - MMC)), metabolic services the combined team mapped out the care pathways
and service establishment timelines.

Care Continuum / Pathway

     1.   Referral to Complex Movement Disorders Service RCH
     2.   Assessment Triage
     3.   Multidisciplinary Evaluation
     4.   Assessment as potential surgical candidate
     5.   Pre-operative family education and psycho-social assessment

             a. Surgical and Medical review
             b. Implantation – Inpatient stay 10 days
             c. Outpatient stimulation
             d. Outpatient rehabilitation to maximise functional benefit
             e. Functional assessments 6 months and yearly

             a. Surgical and Medical review
             b. Inpatient ITB trial / test dose with functional assessment
             c. Implantation – Inpatient stay 10 days
             d. Outpatient refills and therapy modulation
             e. Functional assessments 6 months and yearly

       6. Quality review Complex Movement Disorders Team

Referrals were triaged at the complex movement disorder meeting and then patients were
assessed in the multidisciplinary clinic. Validated assessment scales were employed and
recorded with video in the database. This was subsequently reviewed by the CMD team and if
appropriate surgery was offered and discussed with the family and child. Those thought not to be
suitable for surgery had management suggestions made. All opinions of the CMD team were fed
back to both the referring clinicians, any involved carers of the child and the family. As per the
pathway all surgically managed patients have been regularly followed and safety and efficacy
outcomes measured.

Results and outcomes

      Over the 3 year period 31 children and their families have been assessed and 16 children
       have been treated with ITB. Surprisingly, over the period we have not identified a suitable
       candidate for DBS as per our established guidelines.
      Safety has been ensured with no episodes of baclofen overdose or withdrawal
      Adverse events have been tracked and there has been one patient who developed a
       pump site infection and had to be explanted (reported infection rate in corresponding
       population 33%)
      All follow-up assessments have been completed at appropriate times
      All patients have had a decrease in their BAD scale (the gold standard measurement of
      All except one patient have had a statistically significant change in their COPM scores
       (validated scoring of patient/family identified goals).

As a team we have been pleased by the results and delighted with the functional quality of life
benefits this has translated into. Examples are:
    a family that was able to sleep through the night for the first time in 14 years once the
        painful movements were controlled
    a family that’s been able to go out together recreationally. Previously the uncontrolled
        movements made car seating unacceptably painful and dangerous
    a 15 year old girl being able to eat out at a restaurant for the first time as she could now
        control a fork.

Much of this has been documented in the quality of life forms our families have been filling for us
and with the regular video recording done in our clinics.

Status and sustainability

The program is continuing with increasing numbers of referrals. We are currently assessing the
cost-effectiveness of our multidisciplinary clinics and are working with Department Human
Services towards mainstream funding. RCH remains committed to providing quality care and
ongoing evaluation of the implanted children.

We continue to work with DHS on transition programs for this population and are liaising with
services at Royal Melbourne Hospital, St Vincent’s Hospitaland Monash Medical Centre.

We have a number of initiatives to support and grow the service including enrollment of our CNC
in the Nurse Practitioner Program at University of Melbourne, working with the Victorian
Paediatric Rehabilitation Service to establish regional clinics for programming and refills,
providing a formalised education program for community providers, and in-service training for
The team has been impressed by the number of unanticipated benefits seen such as
improvement in speech clarity, seizure reduction in some patients and swallowing improvements.
We are looking to formally establish a research component to the program to look at this and to
contribute our experience to the literature.

In establishing a new practice we have cautiously provided intervention to those felt highly likely
to benefit. Having established the safety of the intervention we are reviewing our current
guidelines, based on new literature and our own experiences, and hope to extend our target
population – particularly in regard to paediatric DBS.

Achieving quality, excellence, innovation

This program has provided safe effective treatment that is in line with international best practice.
We have created a service that is accessible to both families and care providers. We have worked
effectively as a multidisciplinary team spanning many departments and professions and have
created good care linkages with our referrers and healthcare partners.

A significant challenge identified was the limited resource of professional expertise. This was
effectively managed by the combined clinic allowing each professional to concentrate on their
expert involvement without repetition with the CNC ensuring all assessments / care /
programming / education / feedback had been completed. This also represents the best in family
centered care by providing expert opinions supported by written information and feedback in a
single hospital visit.

Feedback from our families is that we have achieved excellence in care provision and with the
establishment of our nurse practitioner there will be further time efficiency for families with cost
efficiency and better resource utilisation for RCH.

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