Web-Based Intervention to Teach Developmentally Supportive Care to Parents of Preterm Infants: Feasibility and Acceptability Study.

BACKGROUND: Preterm birth affects 8% to 11% of the population and conveys a significant risk of developmental delays. Intervention programs that support child development have been shown to have a positive impact on early motor and cognitive development and on parental well-being. However, these programs are often difficult to implement in a real-life setting due to lack of resources. Hence, our multidisciplinary team developed Mieux Agir au Quotidien (MAQ) to teach developmentally supportive care to parents of preterm infants with the goal of improving child development and parental outcomes. Our intervention included 3 in-person workshops that occurred prior to hospital discharge and a Web-based platform with written and videotaped materials that addressed 5 main themes: (1) infant behavioral cues, (2) flexion positioning; (3) oral feeding support, (4) parent-infant interactions, and (5) anticipation of developmental milestones. OBJECTIVE: This study aimed to test the feasibility and acceptability of the intervention by parents of preterm infants and assess clinical benefits on child neurodevelopment and parental outcomes during the first year of life. METHODS: A total of 107 infants born at <30 weeks and admitted to Sainte-Justine Hospital neonatal intensive care unit and their parents were enrolled in a nonrandomized controlled before-and-after interventional study (intervention n=55, comparison n=52). Acceptability of the program was assessed with a user satisfaction questionnaire. When the infants were at 4 months' corrected age, all parents completed questionnaires on infant temperament, parenting stress, sense of competence, and parenting satisfaction. At 12 months' corrected age, neurodevelopmental testing was performed on infants using the Alberta Infant Motor Scale and the Bayley Scales of Infant and Toddler Development, Third Edition. Comparisons between the 2 groups were done using independent t tests, Wilcoxon rank-sum tests, and Fisher exact tests. RESULTS: The majority of parents (43/45) were satisfied with the intervention program and all would recommend MAQ to others. MAQ met their need for evidence-based information that proved useful to support their child development. No difference in parental or child neurodevelopmental outcomes was detected in this pilot study for most outcomes except for higher median scores for parental coercive behaviors in the intervention group, although proportions scoring in the coercive range did not differ. CONCLUSIONS: Acceptability of the program was high among parents thus supporting the relevance of such intervention. A larger study using a randomized controlled trial design is needed to better document impact on parent and children and investigate how Web-based technologies can efficiently complement individualized intervention to alleviate the burden on health care resources.

Evaluation of a youth agency's supervision practices: A mixed-method approach.

This research presents the findings from an evaluation and organizational development initiative that was requested by a Canadian youth agency working in a large urban setting. A team of four researchers affiliated with the Center for Research on Educational and Community Services (CRECS) at the University of Ottawa conducted the evaluation. The purpose of the evaluation was to identify the supervision needs and challenges of coordinators and front line staff, assess the efficiency of the current supervision practices, and evaluate the supervisors' and supervisees' satisfaction with these current practices. A literature review was performed to help provide a clear definition of 'supervision' and the different professional roles it encompasses. Additionally, research evidence pertaining both to what contributes to supervision efficacy and supervisor competency was reviewed to distill the most robust findings in the existing literature. The lines of evidence consisted of a document and file review, an online employee survey, group discussions (i.e. focus groups), and interviews with key informants. The results of the evaluation helped the research team formulate recommendations to the agency for the development of enhanced supervision practices across its various service areas.

Concurrent validity of ages and stages questionnaires in preterm infants.

BACKGROUND: Although preterm infants born at 29 to 36 gestational weeks (GW) are at risk for developmental delay, they do not always benefit from systematic follow-up. Primary care physicians are then responsible for their developmental surveillance and need effective screening tests. This study aimed to determine whether the Ages and Stages Questionnaires (ASQ) at 12 and 24 months' corrected age (CA) identify developmental delay in preterm infants. METHODS: With a cross-sectional design involving 2 observations at 12 and 24 months' CA, 124 and 112 preterm infants were assessed. Infants were born between May 2004 and April 2006 at 29 to 36 GW. The ASQ and the Bayley Scales of Infant Development were used. Concurrent validity was calculated by using κ coefficient, sensitivity, and specificity. RESULTS: At 12 months' CA, the ASQ did not perform well in identifying infants with mental delay (κ = 0.08-0.19; sensitivity = 0.20-0.60; specificity = 0.68-0.88). Agreement (κ = 0.28-0.44) and specificity (0.90-0.97) were better for the psychomotor scale, but the sensitivity remained insufficient (0.25-0.52). At 24 months, the ASQ had good sensitivity (0.75-0.92) and specificity (0.55-0.78) for detecting mental delays (κ = 0.45). Results remained unsatisfactory for detecting motor delays (sensitivity = 0.31-0.50; specificity = 0.73-0.92). CONCLUSIONS: Preterm infants with developmental delays at 12 months' CA are not adequately identified with the ASQ. At 24 months' CA, the ASQ identifies mental delays but not psychomotor delays. Additional measures should be used to increase yield of detecting at-risk preterm infants.

Prediction of developmental performance in preterm infants at two years of corrected age: contribution of the neurological assessment at term age.

BACKGROUND: The population of preterm infants is increasing and resources available for follow-up are limited. Early markers are needed to identify children who will show major as well as more subtle neurodevelopmental impairments. Such a challenge could be achieved with the Amiel-Tison Neurological Assessment at Term (ATNAT). AIMS: This study assesses the usefulness of the ATNAT in the prediction of developmental problems at two years of corrected age (CA) in infants born between 29 and 37 weeks of gestation. METHOD: Inclusion criteria were: gestational age between 29(0/7) and 36(6/7) weeks inclusively, birth weight below 2500g and minimal 24-hour stay in the Neonatal Intensive Care Unit of Sainte-Justine Hospital. A sample of 147 was prospectively recruited and assessed at two ages: at term with the ATNAT and at 24months CA with Bayley Scales of Infant Development-II. RESULTS: No major impairment such as cerebral palsy and no neurosensory impairment were observed. Developmental delay defined by an index<70 on the mental or psychomotor scale was reported respectively in 6.2% and 5.4% of the cohort. Significant differences in mental, psychomotor and behavioral performances were found according to neurological status. Neurological status was the only variable to enter the predictive model for psychomotor and behavioral indexes. Gender and neurological status remained in the predictive model for mental performance. CONCLUSION: This study supports the inclusion of the ATNAT among the eligibility criteria for systematic neurodevelopmental surveillance as it allows early identification of infants at higher risk of low developmental performances at 24months CA.

Stability of neurocranial signs in the first two years of life in infants at risk.

BACKGROUND: Acknowledgement of low-severity/high-prevalence disabilities in infants born preterm singles out the need to identify early markers of brain impairments which could predict these late emergent disabilities. The neurological status as assessed by the Amiel-Tison Neurological Assessments (ATNA) has been proposed as one such potential marker. However, the stability of the ATNA has never been formally assessed. AIM: This study aimed to assess the stability of the ATNA. STUDY DESIGN: A total of 89 infants born preterm with a gestational age ranging from 29 0/7 to 37 0/7 weeks inclusively and a birth weight below 2500 g were followed during their first two years of life (term age, 4, 8, 12 and 24 months corrected age) in a clinical context. RESULTS: Of these, 62 children (69.7%) were classified in the same category on the five assessments while 14 (15.7%) had only one divergent result and 13 (14.6%) had two divergent results over the follow-up. The neurological status throughout the assessments remains stable according to Cochran's Q. CONCLUSION: As the neurological status identified by the ATNA remained stable throughout repeated measurements in a regular clinical context and has been shown to correlate with later developmental performances, it should be included as a criterion to target children at risk and used during follow-up.

Physical and neurodevelopmental evaluation of children adopted from Eastern Europe.

BACKGROUND: Children adopted from Eastern Europe are at risk of prenatal alcohol exposure, consequently at risk of Fetal Alcohol Spectrum Disorders (FASD). To our knowledge, a systematic complete assessment of these disabilities among adoptees from Eastern Europe has not yet been reported. OBJECTIVE: To assess physical and neurodevelopmental status to identify FASD in children adopted from Eastern Europe. METHOD: Cross sectional study at International Adoption Clinic of a paediatric academic hospital. This evaluation was realized according to the 4-Digit Diagnostic Code (4-DDC). RESULTS: Twenty-nine children were evaluated. Five years after adoption, 7% (N=2) still presented growth delay and 24% (N=7) microcephaly. Facial evaluation demonstrated moderate Fetal Alcohol Syndrome (FAS) features in 7% (N=2) of children. Amiel-Tison Neurological Assessment was non optimal in 46% (N=13/28) of children. Visual-motor perception skills were mainly normal, but 14% (N=4) showed distal somatopraxic problems. Cognition, executive functioning, abstract reasoning and memory were normal. Full scale IQ was 105.5 +/- 13.3; verbal IQ < performance IQ (p<0.005), work memory < short memory (p<0.0001), receptive

Interexaminer reliability of Amiel-Tison neurological assessments.

Both the Amiel-Tison Neurological Assessment at Term and the Amiel-Tison Neurological Assessment From Birth to 6 Years Old are based on the same conceptual framework and both can be used throughout childhood; however, interobserver reliability must be evaluated before these assessments can be introduced into neurodevelopmental follow-up. The aim of this study was to evaluate the interobserver reliability of both assessments. Infants between 29 and 37 weeks gestation were examined with the Amiel-Tison Neurological Assessment at Term (n = 33) and with the Amiel-Tison Neurological Assessment From Birth to 6 Years Old (n = 26). The infants were assessed by two examiners, one after and in the absence of the other. The kappa coefficient and percentage of agreement were calculated. The majority of items in both assessments showed an excellent reliability. The kappa coefficient for the final synthesis was also excellent in both cases. Future studies on the predictive validity of both assessments are required to determine their utility in predicting long-term neurodevelopmental outcome.

Is waiting for rehabilitation services associated with changes in function and quality of life in children with physical disabilities?

OBJECTIVES: To determine whether longer waiting times for rehabilitation were associated with deterioration in child functional status and/or quality of life. METHODS: Parents of 124 children (mean age 45 months) with physical disabilities (e.g., cerebral palsy, global developmental delay, spina bifida) who were referred to pediatric rehabilitation centers were interviewed every three months, from referral until admission into the rehabilitation program. Information from parental interviews included socio-demographics, parental empowerment (Family Empowerment Scale), function (WeeFIM: Functional Independence Measure for Children), and quality of life (PedsQL). Data on date of referral, age, gender, and diagnosis were obtained from hospital databases. RESULTS: Half of the sample waited more than 9.1 months (95% confidence interval: 6.5-16.1) for admission to a public rehabilitation program. A total of 42% paid for some private services while waiting. Over the waiting period, there was statistically significant improvement in WeeFIM cognition and total scores but not in mobility scores. PedsQL psychosocial summary score declined over the waiting period (p< .05). CONCLUSION: Longer wait times for rehabilitation were associated with declining psychosocial quality of life. Reducing waiting times for rehabilitation services may allow rehabilitation specialists to address psychosocial problems for these children.

Wait times for paediatric rehabilitation.

BACKGROUND: Early therapy intervention for children with disabilities may improve functional outcomes. Access to paediatric rehabilitation services can sometimes be difficult. OBJECTIVES: To describe waiting time to receive physical therapy (PT) and occupational therapy (OT) services at rehabilitation centres for young children with physical disabilities; to examine factors associated with these waiting times. DESIGN: Prospective cohort. SUBJECTS: Two hundred and six children with physical disabilities, aged 6 to 72 months, referred in 2002-2004 from the Montreal Children's Hospital and Sainte-Justine Hospital to paediatric rehabilitation centres. MEASURES: Data on date of referral, age, gender and diagnosis were obtained from the hospital databases. Data on date of first PT or OT appointments at the rehabilitation centre, family socio-demographics and disability severity (WeeFIM) were obtained during parental interviews. RESULTS: Half of the sample waited more than 7 and 11 months for PT and OT services, respectively. Shorter waiting time was significantly associated with younger child's age and referral to one particular rehabilitation centre. CONCLUSION: Children with physical disabilities experience long waiting times for PT and OT rehabilitation services. Strategies to improve timely service delivery are needed.

Communicating a diagnosis of cerebral palsy: caregiver satisfaction and stress.

As part of the implementation of a population-based registry of children with cerebral palsy, caregiver satisfaction with the process by which diagnosis was originally communicated by a professional was assessed. Satisfaction with various aspects of the diagnosis process was assessed using a five-point Likert scale and related to child, family, and situational characteristics. Measures were then correlated with current caregiver stress as measured objectively by the Parenting Stress Inventory. During the registration process, 59 consecutive caregivers (55 mothers) were questioned. Overall, 62% (35/59) were satisfied with the disclosure process, with satisfaction ranging from 69% (41/59-hopefulness) to 92% (54/59-honesty) for professional qualities, and from 61% (36/59-sufficient information provided) to 78% (46/59-understandable) for disclosure content. Satisfaction was related to the quantity and content of information given at the disclosure session. Parenting Stress Inventory scores, both total and for parental distress, correlated significantly with both the severity of the child's cerebral palsy and caregiver satisfaction with varying elements of the disclosure process. Overall caregiver satisfaction with the process by which a diagnosis of cerebral palsy is given appears to be good. Together with the severity of a child's intrinsic cerebral palsy, it appears to relate to later parental adjustment to a setting of chronic disability, suggesting a portal through which improvements in information delivery may result in better familial adaptation to disability.

Neurosonography in the second half of fetal life: a neonatologist's point of view.

This article reviews the interpretation of the fetal motor repertoire in the light of neurophysiology and clinical neurology. The continuity of the maturative process from the fetus to the neonate allows us to speculate on the predictive value of optimal and non-optimal neurological function as observed in the fetus and their morphological consequences. Neonatologists know that early prediction concerning outcome is reliable only at the two ends of the spectrum, e.g., optimal and very abnormal situations. However, in intermediate situations the quality of observations achieved by 3D-4D ultrasonography already allows to demonstrate the prenatal onset of brain damage, based on morphologic and functional signs. Their identification during the second half of pregnancy may serve as a retrospective marker of a prenatal insult.

Rehabilitation services for children: therapists' perceptions.

The objective of this study was to examine occupational therapists' (OT) and physiotherapists' (PT) perceptions regarding waiting time and the quality and quantity of the services they provide for children with disabilities. A survey was sent by post to all paediatric OTs and PTs in Quebec, Canada. A Service Delivery Questionnaire included questions regarding therapist/client characteristics, waiting times and quality and quantity of services provided. The Measure of Processes of Care for Service Providers (MPOC-SP) rated use of family-centred care by responding clinicians. Waiting times were longest for OT services (p<0.0001), speech/language interventions (p<0.0001) and services in rehabilitation and community health centres (p<0.0001). Quality of services was rated higher by PTs, experienced therapists and those using more methods of keeping up-to-date. The frequency and duration of services varied according to profession, type of clientele and setting. According to clinicians directly involved in the provision of rehabilitation services, long delays exist for children waiting for rehabilitation services, and perceived quality of services differs according to specific therapist and client characteristics. These findings will assist those involved in planning the distribution of co-ordinated rehabilitation services for children.

When and by whom is concern first expressed for children with neuromotor problems?

OBJECTIVE: To describe when and by whom concern is first expressed for children referred to rehabilitation because of neuromotor problems. STUDY DESIGN AND SETTING: We conducted a survey of parents of 92 children (aged 0-6 years) who were on the waiting list for physical or occupational therapy services at rehabilitation centers in Montréal, Québec. We compared age of child at initial concern with who first expressed concern for children who were considered at risk due to their perinatal history of prematurity and those who were not born prematurely but were later diagnosed as having neuromotor problems. INTERVENTION: Parents were interviewed regarding their child's medical history and utilization of health care services. RESULTS: Parents were concerned later than physicians were regarding their child's development (mean difference, 8.2 months; 95% confidence interval [CI], 3.7-12.6 months). There was no significant difference in time of recognition of problems between the premature (10.2 months) and full-term (11.9 months) groups. Even after controlling for risk group, parental concern occurred later than physician concern (beta coefficient, 7.3; 95% CI, 2.5-12.2). The child's age at the time of initial concern was associated with the child's age at referral to rehabilitation (beta coefficient, 0.04; 95% CI, 0.01-0.06). CONCLUSIONS: Early recognition is important if a child is to benefit from early rehabilitation. It may be important to improve primary care screening of children for neuromotor problems and to increase parental awareness regarding normal motor development of their children. Prompt, simultaneous referral to medical evaluation and rehabilitation resources may decrease delays in rehabilitation.

The Amiel-Tison Neurological Assessment at Term: conceptual and methodological continuity in the course of follow-up.

The Amiel-Tison Neurological Assessment at Term (ATNAT) is part of a set of three different instruments based on a neuro-maturative framework. By sharing a same methodology and a similar scoring system, the use of these three assessments prevents any rupture in the course of high risk children follow-up from 32 weeks post-conception to 6 years of age. The ATNAT which takes 5 minutes to administer may be used in clinical setting as well as in research. Clustering of severe to mild neuro-cranial signs in the neonatal period permits identification of children who could benefit from early intervention.

The relationship between an aortic isthmus blood flow velocity index and the postnatal neurodevelopmental status of fetuses with placental circulatory insufficiency.

OBJECTIVE: The purpose of this study was to evaluate the association between an abnormal aortic isthmus blood flow index and postnatal neurodevelopmental outcome in fetuses with placental circulatory insufficiency. STUDY DESIGN Forty-eight children who were born between 1991 and 1999 were included in this study on the basis of abnormal umbilical artery Doppler velocimetry. Prenatal isthmus blood flow index was obtained by dividing the sum of the systolic and diastolic Doppler blood flow velocity integrals by the systolic blood flow integrals. Neurodevelopmental outcome between 2 and 5 years was classified as optimal, when neurologic assessment and developmental quotient were within normal limits and as nonoptimal when abnormal neurologic findings and/or a nonoptimal developmental quotient was present. Neurodevelopmental outcome was analyzed in relation to isthmus flow index and pulsatility indices in the umbilical artery. RESULTS: The mean gestational age at delivery was 33.0 +/- 2 weeks. Nonoptimal neurodevelopmental outcome was found in 60.4% of the children (29/48). An inverse correlation was found between the isthmus blood flow index and postnatal neurodevelopmental outcome. All 13 children with an isthmus blood flow index of <0.5 were in the nonoptimal group. All 19 children with an optimal outcome had an isthmus blood flow index of >0.5, but this was also the case for 16 other children with nonoptimal neurodevelopmental outcome. An isthmus blood flow index cut-off value of 0.70 was associated with the highest overall positive and negative predictive values. The pulsatility index in the umbilical artery did not provide any significant contribution in the explanation of the outcome. CONCLUSION: The isthmic blood flow index can help to identify a subgroup of fetuses with placental circulatory insufficiency that might benefit from early delivery.

Interobserver reliability of the Amiel-Tison neurological assessment at term.

The eligibility criteria currently used for neurodevelopmental follow-up are traditionally based on perinatal events and characteristics of the infants at birth. However, they seem unsatisfactory to target efficiently all children who will manifest long-term neurologic sequelae and eventually require rehabilitation services. The updated version of the Amiel-Tison's Neurological Assessment At Term (ATNAAT) is expected to allow a better prediction of the neurodevelopmental outcome in high-risk infants. The main objective of the present study, which was performed on 35 infants, was to analyze the interobserver reliability of the updated version of ATNAAT. The evaluator and the observer coded the items of the test simultaneously. Among the 35 items tested, 16 demonstrated an excellent reliability based on the kappa coefficient, 11 items yielded a fair to good reliability, whereas only two items produced an agreement below 0.40. The final synthesis, which was a global appreciation of the neurologic status based on the different findings, yielded a good reliability with a kappa coefficient of 0.76. Among the infants who had a nonoptimal outcome from the assessment, only 38.5% met the traditional criteria currently used for follow-up. It would be important to conduct further research on predictive validity to demonstrate the capacity of the ATNAAT to forecast the long-term neurologic outcome of infants at risk.

Influence of the state of alertness on the pattern visual evoked potentials (PVEP) in very young infant.

The aim of the study was to evaluate the pattern visual evoked potentials (PVEP) combined with an optimal state of vigilance, called liberated state (LS), in order to improve testing in very young infants. Transient PVEP were recorded in response to a checkerboard pattern of 120, 60 and 30 min of arc. in 56 fullterm newborns and 79 preterm infants from birth to 4 months of age. In the fullterms, 28 infants in each group were tested in LS or spontaneous alertness (SA) while in the preterms, 48 infants in each group were tested in LS or SA. No significant difference was found in the amplitude and/or peak time of the PVEP responses between subjects tested in LS compared to SA groups. However, the LS condition improved by approximately 25% the feasibility of prolonged PVEP testing in preterms aged less than 2 months (corrected age). This suggest that the LS condition enhances the clinical feasibility of PVEP testing in very young infants and should be used to optimize the evaluation of visual development in high risk infants in this age group.

Minor neurological signs and developmental performance in high risk children at preschool age.

The aim of this study was to establish correlations between minor neurological findings and developmental performance. A cohort of 72 preschool children was studied (38 females, 34 males; mean age 3 years 8 months, SD 1 year 2 months, range 2 to 5 years) who were considered to be at high risk due to placental insufficiency. The cohort was divided into four categories of neurological status: (1) minimal cerebral palsy (MCP) with independent walking before age 2 years; (2) Amiel-Tison triad (ATT) including imbalance of passive axial tone, phasic stretch reflex in triceps surae, and cranial signs, particularly on the squamous suture; (3) intermediate with one or two of the three ATT signs; and (4) absence of neurological findings. Six subscales of the Griffiths Mental Developmental Scales assessing locomotion, eye-hand coordination, interpersonal skills, language, performance, and practical reasoning were administered. Significant differences were found according to neurological status in three specific domains of development: coordination (F=2.84, p=0.04), language (F=3.65, p=0.02), and practical reasoning (F=3.62, p=0.02). In addition, significant differences were also found in language (L) and practical reasoning (R) performances according to the side of the abnormal stretch reflex: bilateral stretches (L=87.8; R=75.3) or an isolated right stretch (L=95.3; R=83.6) are more strongly associated with impaired developmental performances than an isolated left stretch (L=101.3; R=88.2) with F=2.94; p=0.04 for language and F=3.00, p=0.04 for practical reasoning. We concluded that a short neurological examination, easily performed by pediatricians and family practitioners, can identify permanent markers of minor brain damage occurring before, during, or soon after birth and so anticipate consequences.