64 Is it enough: An Assessment of Parental Satisfaction with an International Adoption Clinic at a Pediatric Tertiary Care Center

Background The circumstance in which internationally adopted children are born and live prior to adoption put them at high risk for health issues. Nearly all adoptees have complex medical conditions, the most common being cleft lip/palate, orthopaedic problems, infectious diseases, congenital heart diseases, and/or nutritional deficiencies, as well as cognitive impairments, and/or developmental delays. Specifically, nearly all institutionalized children will have expressive language delays and most will have motor delays. Although improvement can be seen with time, most do not attain their full potential. Additionally, by nature of adoption, all children experience trauma. In some situations, this will be further compounded by neglect and/or abuse faced prior to adoption, or during institutionalization. Consequently, almost all adoptees develop attachment difficulties. Trained medical professionals are required to screen, monitor, and provide management suggestions for this complex and unique population. Objectives To our knowledge, parental experience of an international adoption clinic has not yet been published. This parent-based evaluation of the parental experience at a pediatric tertiary care center’s international adoption clinic, provides insights that may help guide provision of care for this high-risk population in our centre, throughout the country, and internationally. Design/Methods A qualitative, exploratory design was employed using telephone interviews of eighteen parents of adoptees assessed by a pediatric tertiary care center’s international adoption clinic since 2010. This approach was chosen to allow for more extensive exploration of parental experience, and to identify barriers and facilitators of care. Interviews were 30 to 90 minutes, semi-structured, and transcribed verbatim. Field notes were made during the interviews to note intonation and major concerns, and were used to supplement transcripts during data analysis. Questions covered experiences with pre-adoption counselling, arranging the first clinic visit, health and developmental assessments, life after clinic discharge, and general comments/suggestions. Thematic analysis was performed on the transcripts using Maguire’s step-by-step guide. Results Analysis resulted in four main themes and seven subthemes. The first theme was “difficulty of international adoption”. The second theme “utility and impact of services offered” was subdivided into “pre-adoption counselling”, “clinic visits and medical assessments”, and “post adoption seminars”. The third theme “the administrative procedures of the clinic” was subdivided into “timing and ease of organizing a first visit”, and “hours of operation”. The final theme “gaps in care” was divided into “ongoing difficulty with attachment”, and “allied healthcare services”. These results demonstrate that parents of internationally adopted children often feel overwhelmed by the medical needs of their children and feel unsupported. They recommend comprehensive and in-person pre-adoption counselling with standard referral processes to ensure timely access to care. Post-arrival medical and developmental assessments should be flexible and complete. Most importantly, clinics should incorporate support from allied healthcare professionals, including social work, psychology, occupational therapy, and physiotherapy. In particular, parents were interested in further management of attachment. Conclusion This first parent-based evaluation of the parental experience at a pediatric tertiary care center’s international adoption clinic provides insights that may help guide provision of care to this high-risk population in centres across Canada and internationally.

Novel approaches to quantify CNS involvement in children with Pompe disease

ObjectiveTo characterize the extent of CNS involvement in children with Pompe disease using brain MRI and developmental assessments.MethodsThe study included 14 children (ages 6–18 years) with infantile Pompe disease (IPD) (n = 12) or late-onset Pompe disease (LOPD) (n = 2) receiving enzyme replacement therapy. White matter (WM) hyperintense foci seen in the brain MRIs were systematically quantified using the Fazekas scale (FS) grading system with a novel approach: the individual FS scores from 10 anatomical areas were summed to yield a total FS score (range absent [0] to severe [30]) for each child. The FS scores were compared to developmental assessments of cognition and language obtained during the same time period.ResultsMild to severe WM hyperintense foci were seen in 10/12 children with IPD (median age 10.6 years) with total FS scores ranging from 2 to 23. Periventricular, subcortical, and deep WM were involved. WM hyperintense foci were seen throughout the path of the corticospinal tracts in the brain in children with IPD. Two children with IPD had no WM hyperintense foci. Children with IPD had relative weaknesses in processing speed, fluid reasoning, visual perception, and receptive vocabulary. The 2 children with LOPD had no WM hyperintense foci, and high scores on most developmental assessments.ConclusionThis study systematically characterized WM hyperintense foci in children with IPD, which could serve as a benchmark for longitudinal follow-up of WM abnormalities in patients with Pompe disease and other known neurodegenerative disorders or leukodystrophies in children.

VALIDITY OF PARENT-COMPLETED DEVELOPMENTAL SCREENING IN CHILDREN WITH NEW-ONSET EPILEPSY BELOW THE AGE OF 3

BACKGROUND Infants with childhood-onset epilepsies, including epileptic encephalopathies, are at high risk of developmental challenges such as motor and language delays. There has been a growing focus on developmental screening instruments due to the association between delayed development and long-term adverse outcomes, including negative impacts on health-related quality of life, school achievement and social participation. Therefore, children with developmental delays should be referred as early as possible to rehabilitation services such as occupational, physical, or speech therapy. Developmental screening using standardized tools is recommended in order to identify the high-risk children that require additional developmental assessments. The Ages and Stages Questionnaires (ASQ), a parent-completed developmental screening tool, is one of the more cited and recommended developmental screening tools. However, its utility in children with early-onset epilepsy has yet to be validated. OBJECTIVES This study aimed to determine the validity of the ASQ for identifying children with new-onset epilepsy who require further professional developmental rehabilitation. DESIGN/METHODS Fifty infants (25 males) with seizure onset under 3 years of age were prospectively recruited. Parents completed the ASQ-3 before the first clinic appointment. The ASQ-3 evaluates 5 domains of development. An ASQ score below 2 standard deviations (SD) on any one of the domains was considered abnormal. Once completed, all infants were evaluated by a multidisciplinary team including neurologists, occupational therapists, and physical therapists to determine if they should be referred for further rehabilitation interventions. Accuracy of the ASQ was calculated in terms of sensibility, specificity, positive predictive value (PPV) and negative predictive value (NPV). RESULTS Mean age at the initial evaluation was 13.1 months (SD=8.22). Among the 50 infants, 36 (72%) received a score <-2 SD in at least one domain of the ASQ and 43 (86%) were referred for further rehabilitation services after the multidisciplinary assessment. The ASQ had a sensitivity of 81%, a specificity of 71%, a PPV of 93% and a NPV of 36% in identifying children with new-onset epilepsy who would require further rehabilitation services. CONCLUSION The ASQ, a well-known parent-completed developmental screening tool, when abnormal shows adequate validity for the identification of children with early-onset epilepsy who require developmental assessments and interventions by rehabilitation professionals. Our results also provide further evidence that development delay is the rule rather than the exception in infants with new onset epilepsy.

COMPARING WAIT TIMES OF SINGLE-MOTHER AND TWO-PARENT HOUSEHOLDS ACCESSING DEVELOPMENTAL SERVICES THROUGH SCHOOL-BASED HEALTH CLINICS

BACKGROUND Families in inner-city neighborhoods experience socioeconomic challenges that inhibit access to healthcare providers who could detect development concerns in children. Additionally, studies show low-income, single motherhood to be a significant risk factor for childhood developmental issues. With wait times for developmental assessments and publicly funded services ranging from 9 to 18 months, children may not receive diagnosis and support in a timely manner. School-based health clinics (SBHCs) are easy access points for children to receive necessary services, such as diagnoses and management of health and developmental concerns especially for inner city children facing barriers to health care access. OBJECTIVES To measure the efficacy of SBHCs in alleviating barriers to developmental services for children from inner-city, single-mother households, by comparing wait times to children from two-parent households. DESIGN/METHODS A retrospective chart review of 700 children from two inner-city SBHCs was conducted over 7 years. Family demographic data were collected through the registration process and analyzed. Wait times for developmental assessments were determined from the first developmental concern to assessment by a developmental paediatrician. Independent t-tests were used to compare wait times for children from single-mother households to children from two-parent households. RESULTS The mean age of children seen was 6.9 years (two-parent households) and 7.6 years (single-mother households). 35% of children from single-mother households (n=169), and 36% of children from two-parent households (n=369) received referrals to the SBHC developmental paediatrician. The mean wait times were 129.08 days for single-mother households, and 105.81 days for two-parent households. No significant difference was found in wait time from first developmental concern to seeing a developmental paediatrician (p>0.05). CONCLUSION The SBHC program is a novel healthcare delivery model alleviating barriers to developmental healthcare access for both single-mother and two-parent families. Wait times experienced by SBHC users to see developmental specialists were shorter than the times reported in the literature. The lack of significant difference in wait times between children from single-mother and two-parent households demonstrates how SBHCs alleviate barriers to single-mother households as effectively as two-parent households.