Abstract:
Background:
Children with Cerebral Palsy (CP) often develop neuromuscular hip dysplasia (NHD). If left undetected, this can result in painful hip dislocation and loss of function. In 1994, CPUP guidelines recommended regular hip surveillance (HS) X-rays according to the Gross Motor Functional Classification System (GMFCS). Since then, several other international guidelines have been published.
Objectives:
This research was designed to firstly ascertain health-professional knowledge/use of international guidelines; referral/reporting practices for hip X-rays; barriers/facilitators to HS programme delivery and secondly to determine the timing of the initiation and subsequent hip x-rays for surveillance along with outcomes for children with CP. Findings were benchmarked retrospectively against guidelines.
Methodology:
Firstly, Qualtrics™ surveys were distributed through relevant health professional societies and membership forums. Secondly, children born 2008-2018 residing in Auckland and Waitemata region were identified from the New Zealand CP Register (NZCPR) and their health data linked to radiological and out-patient databases using their unique electronic identifier. Thirdly the initiation and ongoing radiographic surveillance were retrospectively benchmarked against international guidelines.
Results:
48 health professionals replied to the survey, all reported awareness of, or were using guidelines for, surveillance but noted barriers such as limited knowledge, communication, poor patient engagement and complexity of care.159 NZCPR participants were included for analysis, 94 (60%) GMFCS level I/II; 65 (40%) GMFCS III-V. Median age of diagnosis of CP was 18 (1-96) months. 149 (94%) had a first hip X-ray at a median age 20 (5-83) months with 38 (24%) having a first hip X-ray prior to CP diagnosis. A delay of >4 months from diagnosis to X-ray was associated with increased risk of presenting with advanced NHD or dislocation [OR=5.6 (1.5-20.5), p=0.0094]. Māori children [n=32 (20%)] were more likely to be non-independently ambulatory (GMFCS III-V) (p=0.005), experienced more deprivation (p=0.0164) and present with more advanced NHD on first hip X-ray (p=0.0126). Applying guidelines retrospectively, 99 (66%) of children met CPUP recommendations for timing of first hip X-ray and 109 (69%) met the Australian Hip Surveillance Guidelines (AHSG).
Discussion:
There is a reported awareness of HS guidelines amongst health professionals; but only 69% of children met timing of first hip X-ray and none met follow up X-ray for AHSG. This led to 6% of children developing hip dislocation/ advanced NHD across surveillance. The opportunity exists to adapt and integrate international hip surveillance guidelines, unique to New Zealand’s health and population context, to reduced dislocation rate closer to zero. Current knowledge and experience of HS practice needs to be explored with whānau to empower families to be active participants of HS.