Alexandra Sorhage

Aim: To analyse botulinum toxin A (BTX‐A) use in children with cerebral palsy (CP) in a high‐resource country and explore practice variations. Methods: Demographic data for 1149 children/young adults enrolled in the New Zealand Cerebral Palsy Register (born 2002–2018) were linked with hospital procedural records (2002–2023) and analysed using multivariable regression models. Results: Seven hundred and twenty‐five of 1149 children (63%) had ≥ 1 BTX‐A episode by age 15 years ( n = 3734 episodes), with 101 (8.8%) having ≥ 10 episodes. From 2009 to 2023, between 15% and 25% of children < 15 years old had one or more BTX‐A injections per year. Three thousand and four hundred episodes (91%) were under general anaesthesia, 3290 (88%) were linked to the orthopaedic surgical service and only 55 (1.5%) were linked to otorhinolaryngology service. Children classified as gross motor classification system (GMFCS) Levels II and III were more likely to have BTX‐A compared to GMFCS Level I (odds ratio (OR) 2.21 (95% CI 1.56, 3.11) and 3.11 (1.85, 5.22). Repeat injections were more common at GMFCS Levels III or IV hazard ratio 1.48 (1.25, 1.74) and 1.33 (1.13, 1.56). Those children living within a health district with a tertiary hospital (628; 55%), had twice the odds of ever receiving BTX‐A [OR 1.97 (1.49, 2.62)] and were younger at first episode. Conclusions: BTX‐A is widely used in childhood CP in New Zealand, particularly for those with moderate functional limitations. Total level of BTX‐A use remained similar from 2009 to 2023 but appears to be influenced by both individual clinical features and availability of local tertiary hospital services.

Aim: To assess oral health outcomes for children with cerebral palsy (CP) in Aotearoa New Zealand and examine whether the level of motor impairment, using the Gross Motor Function Classification System (GMFCS), is associated with increased dental caries at ages 5 and 12 years. Methods: Longitudinal study linking clinical data from New Zealand Cerebral Palsy Register (NZCPR) for 1220 individuals with CP (aged ≤ 21 years) to national Community Oral Health Service records, 2008–2023. Oral health outcomes were measured using dmft/DMFT indices (decayed, missing, filled teeth) for primary and permanent dentitions. Results: 981 (80%) participants had ≥ 1 dmft/DMFT records. 306/429 (71%) with recorded dmft at age 5 years and 167/230 (73%) with recorded DMFT at age 12 years were caries‐free. Caries‐free rates did not vary across GMFCS levels. Adjusting for confounders, dental decay was more common in children of NZ Māori, Pacific Peoples and Asian ethnicities compared to European children at age 5 years, [OR 3.60 (1.91, 6.80), OR 5.11 (2.36, 11.05), OR 3.06 (1.38, 6.79) respectively] and in NZ Māori at 12 years [OR 3.18 (1.42, 7.12)]. Conclusions: GMFCS was not associated with poorer oral health outcomes. However, significant ethnic disparities highlight the need for culturally responsive oral health interventions.

Background: Children with cerebral palsy (CP) face challenges in maintaining oral hygiene; data on their oral health practices and outcomes are limited. Aim: To examine oral health practices and their association with adverse oral health outcomes among children and young adults with cerebral palsy in New Zealand. Design: A cross‐sectional, observational survey of 90 individuals with CP (aged 0–26 years) collected data on oral health behaviours, experiences, Gross Motor Function Classification System (GMFCS) and Eating and Drinking Ability Classification System (EDACS). Results: Sixty‐one (69%) reported teeth‐brushing twice a day, 84 (94%) using age‐appropriate fluoride toothpaste and 73 (85%) seeing a dental professional in the last 2 years. Difficulty keeping teeth clean was reported by 36 (41%) of participants and associated with ‘poor’ oral health ( p < 0.001); toothache ≤ 12 months ( p = 0.032); bad breath ( p < 0.001) and bleeding gums ≤ 4 weeks ( p < 0.001). Difficulty keeping teeth clean was more commonly reported for participants classified as GMFCS IV–V [19 (59%), p = 0.005] and EDACS III–V [12 (60%), p = 0.034]. Conclusion: Difficulty keeping teeth clean was commonly reported by individuals with greater physical and swallowing limitations and observed with indicators of adverse oral health. Targeted, family‐centred strategies are needed to support effective oral hygiene in this population.

Background: In Aotearoa New Zealand (AoNZ), the cerebral palsy (CP) register (NZCPR) has collected national data since 2015. The dataset includes ethnicity and region of domicile; clinical characteristics; plus data on CP distribution and severity including GMFCS. Neonatal encephalopathy (NE) and hypoxic ischaemic encephalopathy (HIE) are potential causes of CP, so NZCPR data may assist prognostic counselling of whānau (family). Methods: The NZCPR dataset was interrogated to identify individuals born between 1992 and 2020 inclusive, with NE/HIE as a potential cause of CP plus consent for research. The dataset was reviewed for evidence of other potential aetiologies for the CP and these plus preterm infants < 35 weeks gestation were excluded. The distribution and severity of the CP for the NE/HIE cohort was then determined. Results: In total, 139 records were identified with NE/HIE as the likely CP aetiology, after exclusion of other conditions including childhood cardiac arrest, meningitis, bilirubin encephalopathy, hypoglycaemic injury and metabolic diseases. The median (IQR) birth gestation was 40 (38, 40) weeks and median (IQR) birth weight was 3330 (2910, 3650) g. Ten (7%) had died and approximately 70% were Gross Motor Function Classification System (GMFCS) Level IV or V, with quadriparesis as the most common distribution (63%). Associated other morbidities included epilepsy (47%), intellectual impairment (45%), severe visual problems (18%) or non‐verbal (34%). ACC cover was approved in circa 40.5%. Conclusions: In this novel dataset, if CP occurs after NE/HIE it is frequently severe affecting four limbs and associated with other morbidities.

Aim: To investigate the potential risk factors of respiratory illness (ethnicity, oral health, and eating and drinking ability) in children and young adults with cerebral palsy (CP).Method: This was an observational study using a validated CP Respiratory and Oral Health questionnaire with 90 participants (median age 12 years [range: 1–26 years]; 51 males; and 26 New Zealand Māori).Results: Multivariate analysis, accounting for ethnicity and Gross Motor Function Classification System (GMFCS) levels, showed that those participants who were classified in Eating and Drinking Ability Classification System (EDACS) levels III to V reported more previous respiratory disease episodes (odds ratio [OR] = 4.13, 95% confidence interval [CI] = 1.12–15.2, p = 0.033), increased daily/weekly respiratory symptoms (OR = 9.14, 95% CI = 2.03–41.2, p = 0.004), and increased mealtime respiratory symptoms (OR = 13.8, 95% CI = 2.48–76.8, p = 0.002). Both EDACS levels III to V and GMFCS levels IV and V were independently associated with increased propensity to reflux or seizures (OR = 8.16, 95% CI = 1.77–37.5, p = 0.007; OR = 3.37, 95% CI = 1.09–10.4, p < 0.034). Mealtime symptoms of vomiting or regurgitation (relative risk = 1.58, 95% CI = 1.17–2.13, p = 0.032) and daily coughing (relative risk = 1.55, 95% CI = 1.14–2.11, p = 0.023) were associated with a higher risk of reporting one or more oral health symptoms. Toothache was more common in participants classified in EDACS levels III to V (χ², p = 0.021).Interpretation: Children with CP classified in EDACS levels III to V are at a higher risk of respiratory disease and toothache and should be screened appropriately. Regurgitation or vomiting of food and daily coughing are linked with poorer oral health.

Background: Children with cerebral palsy (CP) can develop neuromuscular hip dysplasia (NHD) and radiographic surveillance is recommended, guided by gross motor function classification system (GMFCS) level. This study evaluated the clinical practice of hip surveillance for NHD in a children's hospital and risk factors for abnormal first and subsequent X‐rays.Method: Health data were extracted for 159 participants with CP, 98 male, 52 GMFCS level IV or V (birth years 2008–2018) and linked to electronic radiology datasets.Results: The median age at diagnosis of CP was 18 months (1–96 months). Thirty‐eight participants had X‐rays prior to diagnosis and 10 (6%) had no X‐ray. Seventy‐nine of 111 children classified as GMFCS levels II to V (71%) met both 2008 and 2020 Australian Hip Surveillance Guidelines (AHSG) having the first hip X‐ray by 24 months of age. Sixteen participants (11%) had abnormal first hip X‐ray (subluxation or migration percentage >30% in 14; MP 90%–100% or dislocation in 2). Univariate analyses showed NHD (MP > 30%) or dislocation at first X‐ray was associated with GMFCS IV or V (OR = 6.98 (2.12–22.94), P = 0.001); >4 months between diagnosis and first hip X‐ray (OR = 5.60 (1.52–20.59), P < 0.0009) and more common in NZ Māori children than non‐Māori children (OR = 3.71 (1.25–11.01), P = 0.012).Conclusion: Surveillance for NHD did not follow guidelines in almost a third of children, with delays in screening associated with greater risk of NHD at first X‐ray. Inequities found for Indigenous NZ Māori children with CP require further investigation and stakeholder consultation.

(1) Background: Respiratory disease is a leading cause of morbidity, mortality, and poor quality of life in children with cerebral palsy (CP). This study describes the prevalence of CP-related respiratory disease and the non-modifiable risk factors for respiratory-related hospital admissions in the Aotearoa New Zealand population. (2) Methods: New Zealand Cerebral Palsy Register (NZCPR) participant data and de-identified data from the National Minimum Dataset and Pharmaceutical Dispensing Collections were linked to identify all respiratory-related hospital admissions and respiratory illness-related antibiotic exposure over 5 years in individuals with CP (0–26 years). (3) Results: Risk factors for respiratory-related hospital admissions included being classified Gross Motor Function Classification System (GMFCS) IV or V compared to GMFCS I [OR = 4.37 (2.90–6.58), p < 0.0001; OR = 11.8 (7.69–18.10), p < 0.0001, respectively,]; having ≥2 antibiotics dispensed per year [OR = 4.42 (3.01–6.48), p < 0.0001]; and being of Māori ethnicity [OR = 1.47 (1.13–1.93), p < 0.0047]. Māori experienced health inequities compared to non-Māori, with greater functional disability, and also experienced greater antibiotic dispensing than the general population. (4) Conclusion: Māori children and young adults have a higher risk of respiratory-related illness. Priority should be given to the screening for potentially modifiable risk factors for all children with CP from diagnosis onwards in a way that ensures Māori health equity.

Cerebral palsy is a common cause of physical disability. The New Zealand Cerebral Palsy Register (NZCPR) was established in 2015 and reports national data. Internationally, an early CP diagnosis has been a focus, with imaging and clinical tools used to enable early accurate detection. Accordingly, guidelines are being developed for New Zealand, including a specific pathway for high-risk neonatal intensive care (NICU) graduates, reflecting the high rate of CP in this group. To inform this work, we reviewed imaging data from a retrospective NICU cohort identified from the NZCPR. In these 140 individuals with CP and a confirmed NICU admission during 2000–2019 inclusive, imaging frequency, modality, and rate of abnormality was determined. Overall, 114 (81.4%) had imaging performed in the NICU, but the frequency and modality used varied by gestational subgroup. For infants born at less than 32 weeks gestation, 53/55 had routine imaging with ultrasound, and IVH was graded as none or mild (grade 1–2) in 35 or severe (grade 3–4) in 18 infants. For the 34 infants born between 32–36 weeks gestation, only 13/19 imaged in the NICU were reported as abnormal. For 51 term-born infants, 41/42 imaged in the NICU with MRI had abnormal results.

Listening to the family experience is integral to identifying areas of strength and for improvement in health service delivery around diagnosis and early management of cerebral palsy (CP). Families of children with a diagnosis of CP were invited to complete a purpose-developed electronic survey that included items around the timing of diagnosis, their experiences and satisfaction. It also allowed families to expand on their experiences through free text. Of the 57 families responding, 49% of children functioned at Gross Motor Function Classification System (GMFCS) levels I or II, 8% at GMFCS level III and 23% at GMFCS levels IV or V. 51% of participants were satisfied or very satisfied with the diagnosis experience, 18% were neutral about the experience and 31% were dissatisfied or very dissatisfied. Though the findings of this study may be subject to selection bias, perceived delays in the receipt of diagnosis of CP appeared common with 60% of participants indicating concerns about their child by <6 months of age but only 21% provided with a diagnosis of CP <6 months of age. Approximately 18% of families experienced a delay of more than 12 months. Thirty-four (61%) participants noted a delay between referrals to a service and receipt of service management/therapy. Common themes impacting on families’ experience in the diagnosis and health service delivery journey related to provision of information, and the style of communication, with both direct and ongoing communication styles common for greater family satisfaction. Overall, families desired the diagnosis experience to be informative and timely, with early follow up support and assistance with health sector navigation.