Family expectations and demand for home-based videogaming therapy in children with cerebral palsy in Costa Rica: a mixed methods study.

PURPOSE: To understand the expectations and demand for a movement-tracking videogame (Bootle Blast) for home-based, upper limb (UL) rehabilitation among Costa Rican children with cerebral palsy (CP). METHODS: Data were collected via telephone screening (demand) and child-parent dyads Zoom interviews (expectations). Descriptive statistics and data transformation were used to report on demand success criteria (i.e., recruitment rate, having an appropriate screen and space to play, setting a weekly play time goal (PTG) ≥45 min, identifying one UL therapy goal). The DEPICT model for collaborative qualitative analysis was used in the thematic analysis of interview data. RESULTS: Fifteen dyads participated (1.6 ± 1 recruited/month). All had a flat-screen TV in a suitable location to play, were able to set a UL therapy goal, and established PTGs ranging from 45-120 min per week. Identified themes were: 1) Socio-cultural factors heighten demand, 2) Feelings of hope prevail for the intervention, and 3) Collaborative goal setting supports realistic expectations for Bootle Blast. CONCLUSIONS: Dyads had positive and realistic expectations about implementing the proposed videogaming intervention. This study provides insights on tailoring a family-centered, therapy gaming intervention to improve access to motor rehabilitation for children with CP in rural/remote settings and low-middle income countries.

Costa Rican children have limited access to upper limb rehabilitation due to a combination of economic barriers, societal factors and the family context.Costa Rican children with cerebral palsy and their families expected home-based therapy gaming to be adaptable to their routines and aligned with their interests.Families perceived therapy gaming interventions as a promising path to access, participation, and enjoyment of at home upper limb motor therapy.

Carrying the Burden: Informal Care Requirements by Caregivers of Children with Intestinal Failure Receiving Home Parenteral Nutrition.

OBJECTIVE: To measure the time that caregivers spend on tasks related to providing care to their child with intestinal failure receiving home parenteral nutrition (PN). STUDY DESIGN: We conducted an exploratory cross-sectional study of caregivers of children with intestinal failure receiving long-term PN followed by our intestinal rehabilitation program. Caregivers completed a daily diary of care-related tasks. Data were analyzed using descriptive statistics. Exploratory models were completed to evaluate factors that influenced the amount of time that caregivers spent providing care. SAS University Edition 2018 (SAS Institute, Cary, NC) was used for data analysis with a P value of less than .05 considered significant. RESULTS: Thirty-four caregivers of children with intestinal failure consented with response rates of 85%. The mean age of the primary caregiver was 37 ± 7.9 years of age with 97% being the child's mother. The median PN exposure was 1239 days (IQR, 432-3012). Caregivers reported a median of 29.2 hours per week (IQR, 20.8-45.7 hours per week) of direct medical care. The majority of time was spent on providing PN and care of the central venous catheter (6.1 hours; IQR, 5.2-8.8). CONCLUSIONS: Caregivers of children with intestinal failure receiving long-term PN provide a significant amount of care to ensure their child remains healthy at home. The most significant amounts of time were spent on the administration of the PN and care of the central venous catheter.

Randomized Trial of Oral Iron and Diet Advice versus Diet Advice Alone in Young Children with Nonanemic Iron Deficiency.

OBJECTIVE: To compare the effects of 2 treatment options on neurodevelopmental and laboratory outcomes in young children with nonanemic iron deficiency. STUDY DESIGN: A blinded, placebo-controlled, randomized trial of children 1-3 years with nonanemic iron deficiency (hemoglobin ≥110 g/L, serum ferritin <14 µg/L) was conducted in 8 primary care practices in Toronto, Canada. Interventions included ferrous sulfate or placebo for 4 months; all parents received diet advice. The primary outcome was the Early Learning Composite (ELC) using the Mullen Scales of Early Learning (mean 100, SD 15). Secondary outcomes included serum ferritin. Measurements were obtained at baseline and 4 and 12 months. Sample size was calculated to detect a between-group difference of 6-7 points in ELC. RESULTS: At enrollment (n = 60), mean age was 24.2 (SD 7.4) months and mean serum ferritin was 10.0 (SD 2.4) µg/L. For ELC, the mean between-group difference at 4 months was 1.1 (95% CI -4.2 to 6.5) and at 12 months was 4.1 (95% CI -1.9 to 10.1). For serum ferritin, at 4 months, the mean between-group difference was 16.9 µg/L (95% CI 6.5 to 27.2), and no child randomized to ferrous sulfate had a serum ferritin <14 µg/L (0% vs 31%, P = .003). CONCLUSIONS: For young children with nonanemic iron deficiency, treatment options include oral iron and/or diet advice. We remain uncertain about which option is superior with respect to cognitive outcomes; however, adding ferrous sulfate to diet advice resulted in superior serum ferritin outcomes after 4 months. Shared decision-making between practitioners and parents may be considered when selecting either option. TRIAL REGISTRATION: Clinicaltrials.gov: NCT01481766.

Current Referral Practices for Diagnosis and Intervention for Children with Cerebral Palsy: A National Environmental Scan.

OBJECTIVES: To describe current physician referral practices with respect to age at referral to medical specialists for initial diagnosis of cerebral palsy (CP) and rehabilitation specialists for intervention and to identify factors associated with delayed referral. STUDY DESIGN: National environmental scan of 455 children diagnosed with CP who were born in Canada between 2008 and 2011, selected from 4 sites within the Canadian CP Registry (Edmonton, Calgary, Toronto, and Montreal). Two sources of information were used-children's medical charts and the population-based registry, which provided corresponding data for each child. Primary outcomes extracted from the charts were age at referral for diagnostic assessment, age at diagnosis, age at referral for rehabilitation services, and age at initial rehabilitation intervention. Twelve variables were explored as potential predictors. Descriptive statistics, bivariate analyses, and multiple linear regressions were conducted. RESULTS: Median age (in months) at referral for diagnostic assessment was 8 (mean: 12.7 ± 14.3), diagnosis 16 (mean: 18.9 ± 12.8), referral for rehabilitation services 10 (mean: 13.4 ± 13.5), and rehabilitation initiation 12 (mean: 15.9 ± 12.9). Lower maternal education, mild severity of motor dysfunction, type of CP, early discharge after birth, and region of residence explained between 20% and 32% of the variance in age at referral for assessment, diagnosis, referral for rehabilitation, and rehabilitation initiation. CONCLUSIONS: Findings suggest wide variability exists in the age at which young children with CP are referred to specialists for diagnosis and intervention. User-friendly tools are therefore needed to enhance early detection and referral strategies by primary care practitioners, to ensure early interventions to optimize developmental outcomes and enhance opportunities for neural repair at a younger age.

Re-Evaluation of Serum Ferritin Cut-Off Values for the Diagnosis of Iron Deficiency in Children Aged 12-36 Months.

An ongoing challenge has been determining clinically relevant serum ferritin cut-offs in the diagnosis of iron deficiency in children aged 1-3 years. We identified 2 potential clinically relevant serum ferritin cut-off values through their association with clinically important cut-off of hemoglobin as the indicator of anemia.

Long-term outcome in children with Guillain-Barré syndrome.

OBJECTIVE: To determine the long-term sequelae and early predictors of sequelae for children with Guillain-Barré syndrome (GBS) after the introduction of intravenous gammaglobulin (IVIG). Study design A cross-sectional case series of children with GBS, at least 2 years after recovery, was performed. Manual muscle strength testing was done on 34 muscle groups. The functional independence measure was used to assess function. A chart review was completed, identifying acute factors that may predict long-term sequelae. RESULTS: Forty-seven children with GBS were identified, of whom 30 received IVIG. Persisting long-term muscle weakness with at least one muscle group at a grade 6 level (muscle moves the joint against gravity but only minimal resistance to an applied force) was found in 23% of cases. Each patient had a perfect score on the functional independence measure. Long-term muscle weakness was predicted by young age (P =.03) and a rapid progression to maximal weakness (P =.03). CONCLUSIONS: Despite the introduction of IVIG, 23% of children with GBS had evidence of long-term mild muscle weakness, with minimal impact on function. Young age and a rapid progression during the acute GBS period predicted long-term sequelae.