Clubfeet in the Top End

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1 Clubfeet in the Top End Kelly Paterson, Physiotherapist, RDH David Horman, Orthopaedic Registrar, RDH Oscar Brumby Rendell, Orthopaedic Registrar, RDH/RAH

2 Outline What is Clubfoot? Treatment of Clubfoot Incidence and epidemiology Clubfoot in the Top End Where to from here?

Clubfoot (Congenital Talipes Equino Varus) Idiopathic, congenital malformation of the lower limb Plantar flexed, inverted foot with forefoot adduction Identified on antenatal ultrasound 0.9 6.

3 Clubfoot (Congenital Talipes Equino Varus) Idiopathic, congenital malformation of the lower limb Plantar flexed, inverted foot with forefoot adduction Identified on antenatal ultrasound /1000 births internationally No combined Australian rate 1.1/1000 overall SA 1.0/1000 caucasian WA 3.49/1000 Indigenous WA High incidence PNG (2.7/1000), Hawaiin (6.9/1000) and reportedly NZ Maori (not published)

Clubfoot treatment Historically managed with extensive and repeated orthopaedic surgery Ignacio Ponseti introduced manipulation, serial casting and bracing with excellent outcomes Long term studies

4 Clubfoot treatment Historically managed with extensive and repeated orthopaedic surgery Ignacio Ponseti introduced manipulation, serial casting and bracing with excellent outcomes Long term studies => cost effective and largely curative; better outcomes than surgery Infants treated with Ponseti s method usually require no surgical procedures beyond a percutaneous achilles tenotomy (outpatient procedure)

90% Orthopaedic (Paediatric) Surgeon Post tenotomy

5 Ponseti Method Serial Casting Neonatal serial casting (~6 weeks) Percutaneous Achilles tenotomy (day procedure) 85 90% Orthopaedic (Paediatric) Surgeon Post tenotomy casting (2 3 weeks) 8 9 weeks in Darwin for casting +/ tenotomy

6 Ponseti Method Bracing Boots and Bars maintenance 23h per day first 3 months Nights until 4 years age Regular follow up to 4 years Compliance with Boots and Bars strongest predictor of relapse 95% who use Boots and Bars to 4 years require no further intervention

Top End Incidence 114 cases of CTEV 2000 2011 74% Indigenous 67% Remote 13% Remote Top End

7 Top End Incidence 114 cases of CTEV % Indigenous 67% Remote 13% Remote Top End Incidence 3.2/1000 overall 5.7/1000 Indigenous 1.2/1000 non indigenous 20% 67% Darwin Katherine

9 Top End Epidemiology Similar to other publications world wide Male:Female 2:1 (indigenous and non indigenous) 27% Left unlateral 25% right unilateral 48% bilateral

10 Unable to determine Antenatal diagnosis? Ponseti method? Relapse? Compliance? Surgical rate? Cost / benefit?

11 Discussion Research Improved data capture Evaluation of outcomes and impediments Engagement Strategies Clubfoot Coordinator Healing stick Footy boots Health Literacy Written Video Visits

12 Research Better data is critical Is Ponseti casting effective in the Remote Top End? Is there a role for the previously popular major corrective surgery? One trip to Darwin at an older age Can achieve the treatment goal: A stable, plantargrade foot with high function and low pain Typically less flexible then Ponseti Certainly not cost effective to have to have both!

13 Where is the Problem? Treatment Resources are available Access to staff trained in Ponseti casting PATS issues Accommodation and transport Follow up with Local and Visiting Specialists Need information to be relevant and culturally appropriate Need to convince parents of value of maintenance therapy

15 Impediments to Success Screening Early Ponseti casting Looks fixed Bracing What for? Maintenance vs Shame job Relapse Relapse 6% with B & B vs 80% without Recasting Looks fixed Bracing Viscous cycle, loss of engagement Lost to follow up

16 Boots and Bar Why is it so important? Maintains abduction and dorsiflexion

18 Healing Stick.?

19 Footy boots on a Boomerang?

20 Regional Ponseti Technician Requires training and skill maintenance Probably not enough cases to make it feasible Travelling Ponseti Caravan Funding / Cost vs Centralised management

21 Clubfoot Coordinator Indigenous / culturally experienced Aboriginal Health Worker ideal Engagement and education Joint sessions with physiotherapist Case management Follow up, appointments, data collection, tracking Weblink monitoring Point of contact In case of treatment issues

22 Health Literacy Printed materials with appropriate images, words, Audiovisual materials Clubfoot video Casting video Boots an bar video Appropriate language/s and images Community awareness Ngukurr, Ramingining, Minyerri (Hodgson Downs)

23 Global Help.org free information downloads.

25 Don t Forget the Big Picture Compliance What are the family s wishes Family priorities Bigger problems than clubfoot

26 Summary The incidence of CTEV in the indigenous Top End is amongst the highest in the world There is a proven, effective and cheap treatment We strongly believe that poor compliance is the main cause reduced success of CTEV management We look forward to sharing in your knowledge and experience in managing chronic conditions in rural and remote Australia.

27 Thank You Dr David Horman Miss Kelly Paterson

28 References Ponseti I. Congenital Clubfoot. Fundamentals of treatment. Oxford: Oxford University Press, Global Clubfoot Initiative. [cited 28/04/2015] Available from: Carey M, Bower C, Mylvaganam Rouse I. Talipes equinovarus in Western Australia. Paediatric and Perinatal Epidemiology. 2000; 17: Byron Scott R, Sharpe P, Hasler C et. Al. A South Australian population based study of congenital talipes equinovarus. Paediatr Perinat Epidemiol : Hegazy M, Nasef N, Abdel Ghani H. Results of treatment of idiopathic clubfoot in older infants using the Ponseti method: a preliminary report. J Pediatr Orthop B 2009; 18(2): Morcuende J, Dolan L, Dietz F, Ponseti I. Radical reduction in the rate of extensive corrective surgery for clubfoot using the Ponseti method. Pediatrics. 2004;113: Smith P, Kuo K, Graf A et. Al. Long term Results of Comprehensive Clubfoot Release Versus the Ponseti Method: Which is Better? Clin Orthop Relat Res. 2014; 472(4): Ippolito E, Farsetti P, Caterini R, Tudisco C. Long Term Comparative Results in Patients with Congenital Clubfoot Treated with Two Different Protocols. J Bone Joint Surg Am. 2003; Jul 01:85(7): Cooper DM, Dietz FR. Treatment of idiopathic clubfoot. A thirty year follow up. J Bone Joint Surg Am. 1995; 77A: Ponseti I, Smoley E. Congenital club foot: the results of treatment. J Bone Joint Surg Am. 1963; 45:261. Aronson J, Puskarich C. Deformity and disability from treated clubfoot. J Pediatr Orthop. 1990; 10:109 Laaveg SJ, Ponseti IV. Long term results of treatment of congenital clubfoot. J Bone Joint Surg [Am]. 1980; 62: 23. Lykissas MG, Crawford AH, Eismann EA, Tamai J. Ponseti method compared with soft tissue release for the management of clubfoot: a meta analysis study. World I Orthop. 2013;4: Morcuende J. Keynote Address. 5 th Australasian Ponseti Conference. 2014; Mar Melbourne, Australia. Dietz F The genetics of idiopathic club foot. Clinical Orthopaedics and Related Research. 2002; 401: Chapman C, Stott N, Port R, Nicol R. Genetics of club foot in Maori and Pacific people. J Med Genet. 2000; 37:680 3 Australian Bureau Statistics Regional Statistics of the Northern Territory [citied 21/04/15] Available from: Australian Bureau Statistics Births Australia [cited 21/04/15]. Available from:

Incidence, prevalence and challenges of managing CTEV in the Top End

Incidence, prevalence and challenges of managing CTEV in the Top End David Horman 1, Kelly Paterson 2, Oscar Brumby-Rendell 3 2 Physiotherapy Department, Royal Darwin Hospital, NT; 1 Orthopaedic Department,