Parents of Children Diagnosed with Congenital Anomalies or Cerebral Palsy: Identifying Needs in Interaction with Healthcare Services.

The changes deriving from the birth of a child with a congenital anomaly (CA) or cerebral palsy (CP) imply, in many cases, an increased interaction with health services. A cross-sectional descriptive study was conducted with a convenience sample of parents of children diagnosed with four groups of CA (severe heart anomalies, spina bifida, orofacial clefts, and Down syndrome) and/or CP. A semistructured online questionnaire to be answered by parents was sent by web link to focal points of five parent associations and professional institutions. Data were analyzed through thematic content analysis (open-ended questions) and descriptive analysis (closed-ended questions). The results indicate consistency of responses of parents of children diagnosed with different conditions, namely with respect to the perception of health services and professionals. Closed and open-ended responses indicated three main topics in the interaction between health services and parenthood: information, coordinated and integrated responses, and support. The less positive outcomes suggest unmet information needs, while positive aspects include confidence in the care provided and the "training" received from health professionals.

Embracing the Nutritional Assessment in Cerebral Palsy: A Toolkit for Healthcare Professionals for Daily Practice.

BACKGROUND: Nutritional status assessment (NSA) can be challenging in children with cerebral palsy (CP). There are high omission rates in national surveillance reports of weight and height information. Alternative methods are used to assess nutritional status that may be unknown to the healthcare professionals (HCP) who report these children. Caregivers experience challenges when dealing with feeding problems (FP) common in CP. Our aim was to assess the difficulties in NSA which are causing this underreport and to create solutions for registers and caregivers. METHODS: An online questionnaire was created for registers. Three meetings with HCP and caregivers were held to discuss problems and solutions regarding NSA and intervention. RESULTS: HCP mentioned difficulty in NSA due to a lack of time, collaboration with others, equipment, and childrens' motor impairment. Caregivers experienced difficulty in preparing nutritious meals with adapted textures. The creation of educational tools and other strategies were suggested. A toolkit for HCP was created with the weight and height assessment methods described and other for caregivers to deal with common FP. CONCLUSIONS: There are several difficulties experienced by HCP that might be overcome with educational tools, such as a toolkit. This will facilitate nutritional assessment and intervention and hopefully reduce underreporting.

Clinical features of cerebral palsy in children with symptomatic congenital cytomegalovirus infection.

BACKGROUND: Human cytomegalovirus is the most common cause of vertically transmitted viral infection, affecting around 1% of liveborns. Infection is symptomatic in nearly 10% of infected children who are at higher risk of development of severe neurological disorders, including cerebral palsy. AIMS: To study the clinical profile of children with cerebral palsy caused by symptomatic congenital cytomegalovirus infection in a multicenter study involving six countries from the Surveillance of Cerebral Palsy in Europe (SCPE) Network. METHODS: Data on 35 children (13 males, 22 females; mean age at last assessment 12y 6mo, age range 14y 6mo, min 4y, max 18y 6mo) on pre/peri/neonatal history and last clinical assessment were collected. Classification of cerebral palsy and associated impairments was performed according to SCPE criteria. RESULTS: The majority of children had bilateral spastic cerebral palsy, 85.7%, with a confidence interval (CI) [69.7-95.2], and 71.4% [CI 53.7-85.4] were unable to walk (GMFCS levels IV-V) while fine motor function was severely affected in 62.8% [CI 44.9-78.5] (BFMF levels IV and V). Most of the children with severe CP had severe associated impairments. 11.4% of children had severe visual and 42.8% severe hearing impairment, 77.1% [CI 59.9-89.6] suffered from epilepsy, also 77.1% had severe intellectual impairment, and speech was undeveloped in 71.4%. Female:male ratio was 1.69:1 and 80% of children were term born. CONCLUSIONS: Cerebral palsy following symptomatic congenital cytomegalovirus infection seems to be in most cases a severe condition and associated impairments are overrepresented.

Gastrostomy tube feeding of children with cerebral palsy: variation across six European countries.

AIM: To compare the prevalence of gastrostomy tube feeding (GTF) of children with cerebral palsy (CP) in six European countries. METHOD: Data on 1295 children (754 males, 541 females; mean age 5y 11mo, range 11y 2mo, min 6mo, max 11y 8mo) with CP born from 1999 to 2001 were collected from geographically defined areas in six European countries; four of the areas covered the whole country. Distribution of CP was unilateral 37%, bilateral 51%, dyskinetic 8%, and ataxic 4%. Sixty children were classified in Gross Motor Function Classification System (GMFCS) levels I and II, 6 in level III and 34 in levels IV and Vas Outcome measures were GTF, age at placement, feeding difficulties and the children's height and weight for age standard deviation scores (z-scores). RESULTS: The use of GTF among all children with CP was highest in western Sweden (22%, 95% confidence interval [CI] 16-29), and lowest in Portugal (6%, 95% CI 3-10), northern England (6%, 95% CI 3-9) and in Iceland (3%, 95% CI 0-13; p<0.001). The difference between areas was greater among children in GMFCS levels IV and V (non-ambulant); in this group, lower height z-scores were more prevalent in the areas with lower prevalence of GTF. The children's age at placement of gastrostomy also varied between areas (p<0.002). INTERPRETATION: The observed differences in the use of GTF may reflect differences in access to treatment or clinical practice, or both. Our results suggest that the use of GTF may improve growth in height and weight among children with more severely affected gross motor function - the group most likely to have associated feeding difficulties.