Cerebral Palsy Integrated Pathway, Scotland. CPIPS. Mark Gaston FRCS PhD Royal Hospital for Sick Children, Edinburgh
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1 Cerebral Palsy Integrated Pathway, Scotland. CPIPS Mark Gaston FRCS PhD Royal Hospital for Sick Children, Edinburgh
2 Cerebral Palsy Integrated Pathway Scotland the story so far Background What CPIPS is Current status Future
3 1. Background UPPFÖLJNINGSPROGRAM FÖR CEREBRAL PARES Professor Gunnar Hägglund, Lund, Sweden
4 CPUP Sweden Surveillance Programme began in Southern Sweden in 1994 Since 2005 CPUP has been designated as a National Quality Register in Sweden All the regions and county councils in Sweden participate in CPUP
5 What can we learn from CPUP? Since the introduction of CPUP the number of children with a dislocated hip fell from 7.7% to 0.8% of the CP population in Southern Sweden Prevention of dislocation of the hip in children with cerebral palsy, The first ten years of a population based prevention programme. Hagglund G et al. J Bone Joint Surg 2005;87B:95-101
6 What can we learn from CPUP? The proportion of children treated with orthopaedic surgery for contracture or skeletal torsion deformity decreased from 40 to 15% Prevention of severe contractures might replace multilevel surgery in cerebral palsy: results of a population-based health care programme and new techniques to reduce spasticity. Hagglund G et al. J Pediatr Orthop B 2005;14:
7 What can we learn from CPUP? Hip dislocation Norway Sweden before CPUP with CPUP 15% 1% Prevalence of hip dislocation among children with cerebral palsy in regions with and without a surveillance programme: a cross sectional study in Sweden and Norway. Elkamil A I et al. Musculoskelet Disord 2011;12:284
8 What can we learn from CPUP? Hip displacement and GMFCS % of children with MP < 33% (green), 33 39% (yellow), > 40% (red) Incidence of hip displacement (MP>30%) and GMFCS level Hagglund et al. BMC Musculoskeletal Disorders 2007, 8:101 Soo et al. J Bone Joint Surg Am 2006;88:
9 How CPIPS started 2009 Joint Swedish Paediatric Orthopaedic Society and Scottish Paediatric Orthopaedic Club meeting 2010 Liverpool CP hip consensus meeting After this a group of Scottish children s orthopaedic surgeons met to consider introducing a hip surveillance programme based on CPUP
10 How CPIPS started
11 Shared demographics Scotland Sweden Population 5.3 million 9.5 million Birth rate (raw) 11/ /1000 Incidence of CP 2-3/ /1000 Both have socialised health care effectively free at the point of delivery
12 Population densities
13 But we didn t know 1. How many children with CP lived in Scotland 2. How they accessed an orthopaedic surgeon 3. If referral pathways were similar 4. If clinicians had a hip surveillance protocol 5. If standard positioning for hip x-rays was used
14 University of St Andrews MRes CP projects Madeleine Baines ( ) pathways - referral Kimberley Stevenson ( ) - applicability of the CPUP model to Scotland Alice Wright ( ) - transition from paediatric to adult services Professor Peter Donnelly, Dr Morven Shearer, Mr James Robb
15 Orthopaedic surgeons Agreed a protocol for hip radiography for children with CP at risk of hip displacement Agreed a protocol for X-ray technique Proposed a data set of clinical and radiological measures for hip surveillance
16 Migration percentage (Reimers) B A A/B x % Reimers J. Acta Orthop Scand Suppl 1980;184:1-100.
17 Frequency of X-rays Green annual Grey as indicated Yellow no X-ray
18 Frequency of X-rays Scotland Sweden Green: yearly x-ray Yellow : no x-ray Grey: as indicated clinically
19 Physiotherapy Meetings with paediatric PT representatives from all 14 health boards (regions) in Scotland began in November 2011 to propose a standardised examination and reporting protocol Very enthusiastic response By February 2012 we had an agreed orthopaedic and physiotherapy physical examination dataset
20 Data set Dominant neurological pattern GMFCS level Functional Mobility Scale Lower limb range of movement Spine - visual observation Spasticity management, surgery, fractures Migration Percentage Use of aids and orthosis Action plan
21 Funding Three years funding obtained from the Robert Barr Trust, Brooke s Dream and Scottish Government Health Informatics Centre Dundee (CHI number) CPIPS trialled in Lothian in Spring 2013 Went live in September 2013
22 2. What is CPIPS? Began as a surveillance programme Now is a patient management system based on CPUP for children with CP aged 2 years and above
23 Core: electronic database accessed through NHS Scotland Clinical examination - Physiotherapists GMFCS, FMS, range of motion lower limbs, spine posture and postural management Radiological examination - Orthopaedic Surgeons Migration percentage, record of hip surgery, record of fractures
24 Frequency of examinations Physical - depends on the child s age Radiological - depends on the child s age and GMFCS level
25 Physical examination (PTs) Six monthly for children between 2-6 years Annually for children over 6 years More frequent if red flag signs
26 Traffic light system Physical examination and radiological data values are compared with previously agreed ranges of acceptability within the database Examination data is displayed in a traffic light system Red further management or advice needed Yellow keep under observation or consider treatment Green values within normal ranges
27 Physical examination data set GMFCS I - III
28 Physiotherapy CPIPS is now part of the physiotherapy management of children with CP All 14 Health Boards have at least one PT who has been trained in CPIPS evaluations Annual competencies in physical examination have been agreed
29 Orthopaedic input Responsibilities for orthopaedic surgeons reporting MP across Scotland have been agreed Data on reliability of MP measurement in Scotland are now available (Kinch et al, J Pediatr Orthop Dec.) Anticipated that this will inform competency of MP measurements in the future
30 Migration percentage >40% 33-40% Green annual Grey as indicated Yellow no X-ray <33%
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38 Cerebral Palsy Integrated Pathway Scotland (CPIPS)
39 Cerebral Palsy Integrated Pathway Scotland (CPIPS)
40 Cerebral Palsy Integrated Pathway Scotland (CPIPS)
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42 3. Current status Launched September 2013 Status October patients on system 2914 assessments completed 1638 x-rays taken and MP reported
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44 Red zone x-rays MP > 40% 7.5 % (115 out of 1535 pts) MP > 100% 1.4 % (21 out of 1535 pts) (Sweden started at 11%)
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46 Orthopaedic access for patients PICUs in Glasgow, Edinburgh, Aberdeen and Dundee * * * * Hub and spoke system for orthopaedic surgeons and patients
47 Surgical management of the hip in CPIPS Surgeons report the MP and follow their own clinical philosophy Two strategies: reactive ( wait-and-see ) preventive ( early intervention ) Don t know at the moment if one strategy produces better results than the other
48 Adductor/psoas myotenotomy Femoral osteotomy Pelvic osteotomy When? When? When? What muscles? What degree? How? Tenotomy or lengthening? Uni- or bilateral? Shortening? Derotation? Uni- or bilateral?
49 The CPIPS Hip 3 y.o. GMFCS 5 Pain free. Wide range of abduc9on Clinically silent
50 The CPIPS Hip
51 CPIPS is changing practice Efficient use of clinic Fewer random X- rays Discharge to CPIPS Security for pa9ents / carers / surgeons Op9mal / equality of service delivery Life without CPIPS?
52 CPIPS organisational structure Executive two PT and two orthopaedic members Steering group PT representative from each health region and Executive meets six monthly Annual meeting audit and academic content Named contact in the Health Informatics Centre
53 4. Future Funding: Scottish Government Development: SDR and upper limb Communication: Other databases (CHI no.) Research: CP-E(urope) CPUK!
54 CP-E consortium
55 CPIPS is web based and allows Working together to advance practice Core physiotherapy and orthopaedic practice Evidence based approach based on CPUP Shared professional aims Clarity of purpose Excellent inter-professional working relationships
56 Cerebral Palsy Integrated Pathway Scotland Acknowledgements James Robb Professor Gunnar Hägglund Physiotherapy and Orthopaedic colleagues Keith Milburn / Kenny Morrison at HIC
57 Cerebral Palsy Integrated Pathway Scotland CPIPS Aim is to provide a high quality, standardised follow-up programme for children with CP that will identify musculoskeletal problems by regular physical and radiological examinations to enable effective management of these problems during childhood
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