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1.
Cardiol Young ; 33(2): 280-287, 2023 Feb.
Article in English | MEDLINE | ID: mdl-35197144

ABSTRACT

OBJECTIVE: COVID-19 has markedly impacted the provision of neurodevelopmental care. In response, the Cardiac Neurodevelopmental Outcome Collaborative established a Task Force to assess the telehealth practices of cardiac neurodevelopmental programmes during COVID-19, including adaptation of services, test protocols and interventions, and perceived obstacles, disparities, successes, and training needs. STUDY DESIGN: A 47-item online survey was sent to 42 Cardiac Neurodevelopmental Outcome Collaborative member sites across North America within a 3-week timeframe (22 July to 11 August 2020) to collect cross-sectional data on practices. RESULTS: Of the 30 participating sites (71.4% response rate), all were providing at least some clinical services at the time of the survey and 24 sites (80%) reported using telehealth. All but one of these sites were offering new telehealth services in response to COVID-19, with the most striking change being the capacity to offer new intervention services for children and their caregivers. Only a third of sites were able to carry out standardised, performance-based, neurodevelopmental testing with children and adolescents using telehealth, and none had completed comparable testing with infants and toddlers. Barriers associated with language, child ability, and access to technology were identified as contributing to disparities in telehealth access. CONCLUSIONS: Telehealth has enabled continuation of at least some cardiac neurodevelopmental services during COVID-19, despite the challenges experienced by providers, children, families, and health systems. The Cardiac Neurodevelopmental Outcome Collaborative provides a unique platform for sharing challenges and successes across sites, as we continue to shape an evidence-based, efficient, and consistent approach to the care of individuals with CHD.


Subject(s)
COVID-19 , Telemedicine , Adolescent , Infant , Child , Humans , COVID-19/epidemiology , Cross-Sectional Studies , Pandemics , Heart
2.
J Pediatr Psychol ; 47(6): 707-713, 2022 06 07.
Article in English | MEDLINE | ID: mdl-35146508

ABSTRACT

OBJECTIVE: In the wake of the COVID-19 pandemic, psychologists were pushed to look beyond traditional in-person models of neurodevelopmental assessment to maintain continuity of care. A wealth of data demonstrates that telehealth is efficacious for pediatric behavioral intervention; however, best practices for incorporating telehealth into neurodevelopmental assessment are yet to be developed. In this topical review, we propose a conceptual model to demonstrate how telehealth can be incorporated into various components of neurodevelopmental assessment. METHODS: Harnessing existing literature and expertise from a multidisciplinary task force comprised of clinicians, researchers, and patient/parent representatives from the subspecialty of cardiac neurodevelopmental care, a conceptual framework for telehealth neurodevelopmental assessment was developed. Considerations for health equity and access to care are discussed, as well as general guidelines for clinical implementation and gaps in existing literature. RESULTS: There are opportunities to integrate telehealth within each stage of neurodevelopmental assessment, from intake to testing, through to follow-up care. Further research is needed to determine whether telehealth mitigates or exacerbates disparities in access to care for vulnerable populations as well as to provide evidence of validity for a wider range of neurodevelopmental measures to be administered via telehealth. CONCLUSIONS: While many practices are returning to traditional, face-to-face neurodevelopmental assessment services, psychologists have a unique opportunity to harness the momentum for telehealth care initiated during the pandemic to optimize the use of clinical resources, broaden service delivery, and increase access to care for pediatric neurodevelopmental assessment.


Subject(s)
COVID-19 , Telemedicine , Child , Humans , Pandemics , SARS-CoV-2
3.
Cardiol Young ; 31(6): 888-899, 2021 Jun.
Article in English | MEDLINE | ID: mdl-34082844

ABSTRACT

In 2018, the Neurodevelopmental and Psychosocial Interventions Working Group of the Cardiac Neurodevelopmental Outcome Collaborative convened through support from an R13 grant from the National Heart, Lung, and Blood Institute to survey the state of neurodevelopmental and psychosocial intervention research in CHD and to propose a slate of critical questions and investigations required to improve outcomes for this growing population of survivors and their families. Prior research, although limited, suggests that individualised developmental care interventions delivered early in life are beneficial for improving a range of outcomes including feeding, motor and cognitive development, and physiological regulation. Interventions to address self-regulatory, cognitive, and social-emotional challenges have shown promise in other medical populations, yet their applicability and effectiveness for use in individuals with CHD have not been examined. To move this field of research forward, we must strive to better understand the impact of neurodevelopmental and psychosocial intervention within the CHD population including adapting existing interventions for individuals with CHD. We must examine the ways in which dedicated cardiac neurodevelopmental follow-up programmes bolster resilience and support children and families through the myriad transitions inherent to the experience of living with CHD. And, we must ensure that interventions are person-/family-centred, inclusive of individuals from diverse cultural backgrounds as well as those with genetic/medical comorbidities, and proactive in their efforts to include individuals who are at highest risk but who may be traditionally less likely to participate in intervention trials.


Subject(s)
Heart Defects, Congenital , Psychosocial Intervention , Child , Cognition , Emotions , Heart Defects, Congenital/therapy , Humans , Surveys and Questionnaires
4.
Cardiol Young ; 30(11): 1609-1622, 2020 Nov.
Article in English | MEDLINE | ID: mdl-33143781

ABSTRACT

This paper provides specific guidelines for the neurodevelopmental evaluation of children aged birth through 5 years with complex congenital heart disease. There is wide recognition that children with congenital heart disease are at high risk for neurodevelopmental impairments that are first apparent in infancy and often persist as children mature. Impairments among children with complex congenital heart disease cross developmental domains and affect multiple functional abilities. The guidelines provided are derived from the substantial body of research generated over the past 30 years describing the characteristic developmental profiles and the long-term trajectories of children surviving with complex congenital heart conditions. The content and the timing of the guidelines are consistent with the 2012 American Heart Association and the American Academy of Pediatrics scientific statement documenting the need for ongoing developmental monitoring and assessment from infancy through adolescence. The specific guidelines offered in this article were developed by a multidisciplinary clinical research team affiliated with the Cardiac Neurodevelopmental Outcome Collaborative, a not-for-profit organisation established to determine and implement best neurodevelopmental practices for children with congenital heart disease. The guidelines are designed for use in clinical and research applications and offer an abbreviated core protocol and an extended version that expands the scope of the evaluation. The guidelines emphasise the value of early risk identification, use of evidence-based assessment instruments, consideration of family and cultural preferences, and the importance of providing multidimensional community-based services to remediate risk.


Subject(s)
Heart Defects, Congenital , Adolescent , Child , Heart Defects, Congenital/diagnosis , Heart Defects, Congenital/epidemiology , Humans , Infant , Longitudinal Studies , Risk Assessment
5.
Adv Neonatal Care ; 16(3): 211-9, 2016 Jun.
Article in English | MEDLINE | ID: mdl-27140031

ABSTRACT

BACKGROUND: Developmental care practices across pediatric cardiac intensive care units (CICUs) have not previously been described. PURPOSE: To characterize current developmental care practices in North American CICUs. METHODS: A 47-item online survey of developmental care practices was developed and sent to 35 dedicated pediatric CICUs. Staff members who were knowledgeable about developmental care practices in the CICU completed the survey. FINDINGS/RESULTS: Completed surveys were received from 28 CICUs (80% response rate). Eighty-nine percent reported targeted efforts to promote developmental care, but only 50% and 43% reported having a developmental care committee and holding developmental rounds, respectively. Many CICUs provide darkness for sleep (86%) and indirect lighting for alertness (71%), but fewer provide low levels of sound (43%), television restrictions (43%), or designated quiet times (21%). Attempts to cluster care (82%) and support self-soothing during difficult procedures (86%) were commonly reported, but parental involvement in these activities is not consistently encouraged. All CICUs engage in infant holding, but practices vary on the basis of medical status and only 46% have formal holding policies. IMPLICATIONS FOR PRACTICE: Implementation of developmental care in the CICU requires a well-planned process to ensure successful adoption of practice changes, beginning with a strong commitment from leadership and a focus on staff education, family support, value of parents as the primary caregivers, and policies to increase consistency of practice. IMPLICATIONS FOR RESEARCH: Future studies should examine the short- and long-term effects of developmental care practices on infants born with congenital heart disease and cared for in a pediatric CICU.


Subject(s)
Child Development , Coronary Care Units/organization & administration , Heart Defects, Congenital/therapy , Canada , Child , Child, Preschool , Cross-Sectional Studies , Female , Humans , Infant , Infant, Newborn , Male , Professional-Family Relations , Surveys and Questionnaires , United States
6.
JAMA Pediatr ; 169(5): e150636, 2015 May.
Article in English | MEDLINE | ID: mdl-25938655

ABSTRACT

IMPORTANCE: Evidence-based treatments that achieve optimal energy intake and improve growth in preschool-aged children with cystic fibrosis (CF) are a critical need. OBJECTIVE: To test whether behavioral and nutritional treatment (intervention) was superior to an education and attention control treatment in increasing energy intake, weight z (WAZ) score, and height z (HAZ) score. DESIGN, SETTING, AND PARTICIPANTS: This randomized clinical trial included 78 children aged 2 to 6 years (mean age, 3.8 years) with CF and pancreatic insufficiency (intervention, n = 36 and control, n = 42). The study was conducted at 7 CF centers between January 2006 and November 2012; all 78 participants who met intent-to-treat criteria completed through follow-up. INTERVENTIONS: Behavioral intervention combined individualized nutritional counseling targeting increased energy intake and training in behavioral child management skills. The control arm provided education and served as a behavioral placebo controlling for attention and contact frequency. Both treatments were delivered in person or telehealth (via telephone). Sessions occurred weekly for 8 weeks then monthly for 4 months (6 months). Participants then returned to standard care for 1 year, with 12-month follow-up thereafter. MAIN OUTCOMES AND MEASURES: Changes in energy intake and WAZ score were examined from pretreatment to posttreatment (6 months) and change in HAZ score was assessed pretreatment to follow-up (18 months). Covariates included sex, Pseudomonas aeruginosa status at baseline, and treatment modality (in person vs telehealth). RESULTS: At baseline, mean (SD) energy intake was 1462 (329) kcals/d, WAZ score was -0.44 (0.81), and HAZ score was -0.55 (0.84). From pretreatment to posttreatment, the intervention increased daily energy intake by 485 calories vs 58 calories for the control group (adjusted difference, 431 calories; 95% CI, 282 to 581; P < .001) and increased the WAZ score by 0.12 units vs 0.06 for the control (adjusted difference, 0.09; 95% CI, -0.06 to 0.24; P = .25). From pretreatment to follow-up, the intervention increased the HAZ score by 0.09 units vs -0.02 for the control (adjusted difference, 0.14 units; 95% CI, 0.001 to 0.27; P = .049). Measured treatment integrity and credibility were high for both groups. CONCLUSIONS AND RELEVANCE: Behavioral and nutritional intervention improved energy intake and HAZ score outcomes but not WAZ score outcomes. Our results provide evidence that behavioral and nutritional treatment may be efficacious as a nutritional intervention for preschoolers aged 2 to 6 years with CF and pancreatic insufficiency. TRIAL REGISTRATION: clinicaltrials.gov Identifier:NCT00241969.


Subject(s)
Cognitive Behavioral Therapy , Cystic Fibrosis/therapy , Nutrition Therapy , Child , Child, Preschool , Cystic Fibrosis/physiopathology , Energy Intake , Humans , Outcome Assessment, Health Care
7.
J Pediatr Psychol ; 40(1): 8-17, 2015.
Article in English | MEDLINE | ID: mdl-25236709

ABSTRACT

OBJECTIVE: Use a standardized system to code parent-child interactions during respiratory treatments for cystic fibrosis (CF) and analyze relations between behaviors during treatments and medical regimen adherence. METHODS: A total of 15 families (53% girls; M age = 8.9 years; SD = 1.8) had three respiratory treatments recorded in the home environment and coded. Families provided six 24-hr recalls of child medical regimen activities, and electronic airway clearance time was recorded over 3 months to measure medical regimen adherence. RESULTS: Parent positive attention, instructions, and avoidance of negative statements were significantly related to child cooperation during respiratory treatments. Parental presence, positive attention, instructions, and child cooperation during treatments were related to higher respiratory adherence rates. CONCLUSIONS: Direct observation methodology has led to effective nutritional adherence intervention for children with CF. These preliminary data demonstrate that an observational method could also be used to develop interventions to promote respiratory medication adherence.


Subject(s)
Behavior Observation Techniques , Cystic Fibrosis/psychology , Cystic Fibrosis/therapy , Parent-Child Relations , Patient Compliance/psychology , Respiratory Therapy/psychology , Child , Female , Humans , Male , Parenting/psychology , Problem Behavior
8.
J Pediatr Hematol Oncol ; 34(5): 340-3, 2012 Jul.
Article in English | MEDLINE | ID: mdl-22584783

ABSTRACT

Sickle cell disease (SCD) pain remains difficult to manage. This pilot study evaluated single-session biofeedback-assisted relaxation training (BART) for SCD pain in children. Ten participants (mean = 12.1 y) completed a 1-hour BART session using thermal biofeedback and home practice. Participants demonstrated changes in peripheral body temperature after the training session (d = 1.08) and at 6-week follow-up (d = 0.97) relative to their baseline visit. Reductions in patient-reported pain frequency were found after completing BART. Health-related quality of life and pain-related disability improvements were observed; however, effect sizes were small to minimal. Single-session BART may be a promising, complementary approach to medical management of pediatric SCD pain.


Subject(s)
Anemia, Sickle Cell/therapy , Relaxation Therapy , Adolescent , Anemia, Sickle Cell/physiopathology , Anemia, Sickle Cell/psychology , Biofeedback, Psychology , Child , Female , Follow-Up Studies , Health Status , Humans , Male , Patient Acceptance of Health Care , Pilot Projects , Quality of Life
9.
Pediatr Blood Cancer ; 58(2): 239-43, 2012 Feb.
Article in English | MEDLINE | ID: mdl-21425450

ABSTRACT

BACKGROUND: Patients with sickle cell anemia (SCA) experience a broad range of psychiatric disorders, placing them at risk for more complicated and longer hospitalizations for vaso-occlusive crises (VOC). The current study examined the frequency of psychiatric disorders in SCA patients (ages birth to 20 years) admitted for VOC in a nationally representative sample and the association between psychiatric disorders and hospital length of stay (LOS). PROCEDURE: Patients with a primary diagnosis of SCA with crisis identified through the nationally representative Kids' Inpatient Database (KID) 2006 from the Agency of Healthcare Research and Quality were included for analysis. Patients with psychiatric disorders listed as secondary diagnoses were categorized under specific psychiatric disorders (mood disorder, anxiety disorder, disruptive behavior disorder, substance use disorder). Non-parametric and regression analyses were utilized for nationally weighted data, to determine the effect of psychiatric disorders on LOS, while controlling for significant covariates. RESULTS: For 21,255 hospital discharges for children with SCA with crisis in 2006, the mean LOS was 4.51 days. Approximately 6% of the patients discharged had a psychiatric disorder. After adjusting for significant covariates, mood disorders, anxiety disorders, and any psychiatric disorder were each associated with significantly longer LOS (P < 0.01). Substance and disruptive behavior disorders were not associated with LOS. CONCLUSIONS: Pediatric patients diagnosed with a psychiatric disorder, specifically mood or anxiety disorders, have longer LOS for VOC. These findings suggest that future interventions aimed at managing VOC may need to consider adjunctive psychiatric assessment and intervention.


Subject(s)
Anemia, Sickle Cell/complications , Anxiety Disorders/etiology , Length of Stay , Mental Disorders/etiology , Mood Disorders/etiology , Adolescent , Adult , Anemia, Sickle Cell/psychology , Child , Child, Preschool , Comorbidity , Family , Female , Follow-Up Studies , Humans , Infant , Infant, Newborn , Inpatients , Male , Prognosis , Young Adult
10.
J Am Acad Nurse Pract ; 22(11): 566-72, 2010 Nov.
Article in English | MEDLINE | ID: mdl-21054629

ABSTRACT

PURPOSE: To determine if increased dietary or supplemental intake of fiber slows or prevents inflammation as evidenced by high-sensitivity C-reactive protein (hs-CRP) values. DATA SOURCES: CINAHL, Medline, Health Source, Nursing/Academic Edition, and the Cochrane Library. CONCLUSIONS: Evidence from this review suggested significant associations between fiber consumption and decreased risk for cardiovascular (CV) disease as evidenced by a decrease in hs-CRP levels. Six of the seven articles reviewed showed statistically significant decreases in hs-CRP levels as dietary fiber was increased. IMPLICATIONS FOR PRACTICE: Fiber in the diet may play a strong role in CV health as evidenced by six clinical trials completed using amount of fiber intake in relation to inflammation, particularly hs-CRP levels. Patients need to be educated to adhere to a high fiber diet, either by dietary or supplemental means, using the recommended 25-30 g of fiber per day.


Subject(s)
C-Reactive Protein , Cardiovascular Diseases/prevention & control , Dietary Fiber , Biomarkers/metabolism , C-Reactive Protein/drug effects , C-Reactive Protein/metabolism , Cardiovascular Diseases/blood , Cardiovascular Diseases/epidemiology , Cardiovascular Diseases/etiology , Cost of Illness , Dietary Fiber/administration & dosage , Dietary Fiber/pharmacology , Feeding Behavior , Humans , Inflammation , Nutrition Policy , Obesity/complications , Research Design , Risk Factors , Risk Reduction Behavior , United States/epidemiology
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