A special supplement: findings from the Australian Cerebral Palsy Register, birth years 1993 to 2006

Section: Discussionsupporting

confidence: 83%

Identification and measurement of dystonia in cerebral palsy

Rice

Skuza

Baker

et al. 2017

“…Fifty‐four per cent (54%) of the sample were male, 55 per cent were born preterm, 88 per cent had a spastic CP subtype, 70 per cent were ambulatory with or without assistance (GMFCS level I–III), and 61 per cent had one or more comorbidities (Table ). This approximates (with minor variation) the major features as published of the CP profile for both the CCPR, and for reports from other high resource nations . Almost all (99%) children had received rehabilitation services in the preceding 6 months.…”

Section: Resultssupporting

confidence: 71%

Family‐centred health care for children with cerebral palsy

Shevell

Oskoui

Wood

et al. 2018

Aim To identify characteristics of young children with cerebral palsy (CP), and intrinsic and extrinsic factors, that may be associated with parental perceptions regarding family‐centred health care services. Method We conducted a cross‐sectional study, drawing our sample from the Canadian Cerebral Palsy Registry (CCPR). Parents rated the extent of family‐centred care provided by their child's health care teams using the 56‐item Measures of Process of Care (MPOC) questionnaire. Environmental and CP phenotypic variables were extracted from the CCPR for group comparisons. Low and high MPOC‐56 raters were also compared. Results Valid responses were obtained from 282 families (90%). All MPOC‐56 subscales were highly rated (median ≥6.0), indicating satisfaction with health care services, with the exception of the Providing General Information subscale (median 4.8, interquartile range 3.2–6.0). Parents from Nova Scotia rated all subscales significantly higher than parents from other regions. CP subtype and severity were not significantly associated with MPOC‐56 subscale scores. Higher socio‐economic status was associated with lower MPOC‐56 subscale scores. Higher paternal educational attainment and household income were significantly associated with lower scores on the Providing General Information and Providing Specific Information about the Child subscales respectively. Interpretation Participants affirmed the provision of family‐centred services from Canadian pediatric rehabilitation centres. Sociodemographic factors were associated with parental perceptions of family‐centred services. What this paper adds Sociodemographic factors were associated with parental perceptions of family‐centred care. Factors intrinsic to the child's cerebral palsy were not associated with parental perceptions.

“…The other congenital anomalies identified in the BCPR were also seen in the other registers. [8][9][10][11][12][13][14] Musculoskeletal disorders comprised 10% of congenital anomalies, less than the 23% noted in the Merseyside and Cheshire Cerebral Palsy Register 11 but more than those noted in the Australian, 13 Canadian, 12 and other European CP registers. 9,10,14 Disorders of the eye, digestive system, and cleft lip were found in smaller proportions in the BCPR.…”

Section: Discussionmentioning

confidence: 93%

“…6 Congenital anomalies are more common in children with CP compared to the general paediatric population, both with regard to the central nervous system and other organ systems. [7][8][9][10][11][12][13][14] The Australian Cerebral Palsy Register reported that for the birth years 1993 to 2009, between 15% and 40% of children had a major congenital anomaly. 7 In the Western Australian Birth Defect Registry and Western Australian Cerebral Palsy Register for 1980 to 1994, it was reported that 30.6% of all CP cases had congenital anomalies; 46.2% had cerebral disorders and 53.8% had non-cerebral disorders.…”

mentioning

confidence: 99%

Congenital anomalies in children with cerebral palsy in rural Bangladesh

Manlongat

McIntyre

Smithers‐Sheedy

et al. 2020

Self Cite

Aim To determine the proportion of children with cerebral palsy (CP) who had major congenital anomalies, describe the types of disorders, and report on the children's functional outcomes. Method Data were extracted from the Bangladesh Cerebral Palsy Register (BCPR). Descriptive analyses were conducted on children with CP and major congenital anomalies. Odds ratios (ORs) with 95% confidence intervals (CIs) were calculated to measure the association between major congenital anomalies, clinical severity, and presence of comorbidities. Results Between January 2015 and December 2016, 726 children with CP were newly registered with the BCPR (277 females, 449 males; mean age [SD] at registration 90mo [54mo], 4mo–18y). Seventy‐eight children (11%) had a major congenital anomaly. Neurological (86%) and musculoskeletal congenital anomalies (10%) were the most common. Microcephaly was the most common congenital anomaly (83%). The odds of severe functional motor limitations (OR=2.4, 95% CI=1.9–2.9), epilepsy (OR=1.6, 95% CI=1.1–2.1), visual impairment (OR=2.6, 95% CI=2.0–3.2), presence of strabismus (OR=3.9, 95% CI=3.8–4.4), hearing (OR=1.2, 95% CI=0.6–1.9), speech (OR=5.4, 95% CI=4.6–6.2), and intellectual impairments (OR=2.3, 95% CI=1.8–2.8) were higher in children with congenital anomalies compared to children without. Interpretation The proportion of children with major congenital anomalies in the BCPR (11%) was lower than that identified in higher‐income countries. This may be because of differences in how congenital anomalies are diagnosed as well as the impact of survival bias. In Bangladesh, children with CP and major congenital anomalies are more likely to have severe functional motor limitations and associated comorbidities. What this paper adds Eleven per cent of children with cerebral palsy (CP) in Bangladesh had major congenital anomalies. Neurological and musculoskeletal congenital anomalies were the most common. Severe functional motor limitations and associated comorbidities were more common in children presenting with CP and major congenital anomalies.