Co-occurrence of Attention-Deficit/Hyperactivity Disorder and Septo-Optic Dysplasia: A Neurodevelopmental Case Report.

Septo-optic dysplasia (SOD) is a rare congenital disorder characterized by optic nerve hypoplasia, brain midline structure anomalies, and hypothalamic-pituitary axis hypoplasia. This case report aims to highlight the association between SOD and neurodevelopmental disorders, focusing on attention-deficit/hyperactivity disorder (ADHD) in addition to the well-established link with autism spectrum disorder (ASD). A six-year-old male diagnosed with SOD presented with behavioral concerns, including attention and impulse control issues. A comprehensive psychological evaluation confirmed the diagnosis of ADHD and ruled out ASD. Ophthalmological assessments were integral to understanding the patient's condition. This case underscores the importance of recognizing neurodevelopmental disorders in individuals with SOD, with a particular focus on the less common association with ADHD. The co-occurrence of these conditions underscores the complexity of neurodevelopmental disorders and the need for comprehensive evaluation and management. Collaboration between ophthalmologists and mental health specialists is crucial for addressing the diverse needs of these patients. Early identification and intervention for ADHD are essential for optimal developmental outcomes. This case underscores the necessity for further research to elucidate the relationship between SOD and ADHD, emphasizing the importance of holistic patient care and interdisciplinary collaboration in managing individuals with SOD spectrum conditions.

Barriers to Receiving Applied Behavior Analysis Services in Children With Autism Spectrum Disorder.

Introduction Applied behavior analysis (ABA) is commonly used to treat children with autism spectrum disorder (ASD). The objective of this study is to evaluate barriers to ABA treatment in ASD. Methods A voluntary 51-question survey, including demographics, socioeconomic status, parental assertiveness/self-advocacy, and parent perceptions, was provided to caregivers of children aged one to eight years old diagnosed with ASD. The survey consisted of a series of yes/no, five-point Likert scale, multiple-choice, and text field questions. Results A total of 540 surveys were completed. The median time since ASD diagnosis was three to five years ago. Respondents were identified as receiving ABA (r-ABA) vs. not receiving ABA (n-ABA). Respondents were from Florida (60%; r-ABA = 61.7%; n-ABA = 57.0%), Pennsylvania (18%; r-ABA = 21.3%; n-ABA = 12.8%), Delaware (17%; r-ABA = 11.7%; n-ABA = 26.8%), and New Jersey (5%; r-ABA = 5.3%; n-ABA = 3.4%) (p < 0.001). Caregiver belief in ABA treatment, empowerment, and comfort level were greater for r-ABA (4.20 ± 0.72; 3.19 ± 0.93; 4.35 ± 0.72) compared to n-ABA (4.06 ± 0.83; 2.90 ± 1.00; 4.03 ± 0.91), respectively (mean ± SD). Conclusion Barriers to accessing ABA services are a multifactorial issue. Location, income, education of the caregiver, time since ASD diagnosis for the child, as well as caregiver empowerment, belief in treatment, and level of comfort in accessing services most likely contribute to children with ASD not receiving ABA. Empowering parents on their impact on their child's treatment may improve ABA use.

Associations of paternal involvement in disease management with maternal and family outcomes in families with children with chronic illness.

OBJECTIVE: The role of fathers in pediatric disease management and its associations with family functioning have rarely been the focus of empirical study. In this study, we used the Dads Active Disease Support scale (DADS), a measure of the amount and helpfulness of paternal involvement in pediatric disease management, to explore the association between father involvement and other aspects of family functioning. METHOD: A sample of 190 heterosexual couples completed the DADS and measures of maternal, marital, and family functioning. RESULTS: Maternal report of higher ratings on DADS Helpfulness scale was associated with fewer self-reported maternal psychiatric symptoms and less perceived impact of the disease on family functioning. Both mothers' and fathers' reports indicated that more paternal involvement was related to more favorable outcomes in marital satisfaction and family functioning. CONCLUSIONS: More paternal involvement in disease management was associated with healthier maternal, marital, and family functioning. Longitudinal studies are needed to determine whether paternal involvement is likely to be a fruitful target for psychological intervention.

Paternal involvement in the management of pediatric chronic diseases: associations with adherence, quality of life, and health status.

OBJECTIVES: This article reports associations among paternal involvement in pediatric chronic disease management and child outcomes. METHODS: The Dads' Active Disease Support scale (DADS) and measures of treatment adherence, quality of life, health status, and health care utilization were obtained for youths with six chronic diseases, with complete data sets obtained from 190 couples. RESULTS: Paternal involvement was not associated with these outcomes among younger children. Among adolescents, mother-reported and father-reported DADS scores indicating more paternal involvement were associated with maintenance, rather than deterioration, of treatment adherence and more favorable quality of life. Youths' health status and health care utilization were not related significantly to paternal involvement. CONCLUSIONS: More paternal involvement was associated with more favorable adherence and quality of life among adolescents but not associated with health status or health care utilization. Longitudinal studies could verify whether paternal involvement merits clinical intervention.

Psychometric properties of a new measure of fathers' involvement in the management of pediatric chronic diseases.

OBJECTIVE: Despite theoretical and empirical reasons suggesting its potential importance, paternal involvement in the management of pediatric chronic diseases has rarely been a primary focus of research on family adaptation to pediatric disease. This may be due to a lack of appropriate tools to measure relevant behaviors. This study assessed the reliability and validity of the Dads' Active Disease Support scale (DADS), which was designed to measure male and female caregivers' estimates of the amount and helpfulness of paternal involvement in managing six pediatric chronic diseases. METHOD: A sample of 224 heterosexual couples completed the DADS and measures of mother, child, and family functioning, yielding 190 who completed data sets. Of these, 91 mothers and 88 fathers completed the DADS again after a 1-month interval. RESULTS: Results confirmed DADS internal consistency, test-retest reliability, and interparent agreement. Confirmatory factor analysis supported its construct validity: A two-factor model (amount and helpfulness of fathers' involvement) best accounted for participants' responses. Significant correlations with scores on the Family Assessment Device supported DADS convergent validity. DADS scores of mothers and fathers suggest substantial room for improvement in both the amount and the helpfulness of paternal involvement in disease management. Mothers provided significantly higher ratings of the helpfulness of fathers' involvement than did fathers. CONCLUSIONS: The DADS appears to be a reliable and valid measure for studies of the associations between paternal involvement in disease management and child, maternal, and family adaptation to pediatric chronic medical conditions.

Relations among asthma knowledge, treatment adherence, and outcome.

BACKGROUND: Asthma knowledge is frequently assumed to be a prerequisite for optimal asthma treatment. However, the validity of existing asthma knowledge questionnaires has not been rigorously examined, and no contemporary measure of asthma knowledge has received widespread acceptance. OBJECTIVE: To construct and examine the psychometric properties of an asthma knowledge instrument, and its association with demographic and psychosocial variables, asthma medication adherence, and treatment outcome. METHODS: A 25-item Asthma Knowledge Questionnaire was developed with input from national pediatric asthma experts. Parents of 155 children with asthma completed the Asthma Knowledge Questionnaire as well as demographic, family functioning, and home environment measures. Asthma outcomes and adherence with inhaled medication was measured across 12 months. RESULTS: Despite the many steps taken to develop a strong measure of asthma knowledge, reliability was relatively poor. There was also no association between asthma knowledge and treatment adherence or outcomes. Furthermore, asthma knowledge was not a unidimensional construct and was not a simple function of education. CONCLUSIONS: Findings from this study, in combination with previous studies of asthma knowledge questionnaires, suggest that the construction of a simple self-report asthma knowledge instrument for use as a primary outcome measure demonstrating mastery of asthma self-management skills may not be achievable.

Reliability and validity of a system for coding asthma outcomes from medical records.

To evaluate the reliability and validity of a standardized asthma outcome coding system, we obtained medical records for 182 asthmatic children. Records were coded by trained staff using explicit and detailed criteria. Outcome variables coded included number of corticosteroid bursts, asthma-related physician contacts, emergency room visits, hospitalizations, and number of asthma episodes. Interrater reliability was excellent. Patterns of associations between the coded variables and other independently obtained outcome measures supported concurrent and construct validity. Given the intense scrutiny of health outcomes in the current managed-care marketplace, use of this system may foster further clinical research examining asthma outcomes.

Can the Family Assessment Device (FAD) be used with school aged children?

This article examines the usefulness of the Family Assessment Device(FAD) in assessing family functioning with school-aged children (under 12 years of age) compared to children 12 and older and mothers. FAD reports from 194 children with asthma (132 under 12 years; 62 12 years and older) were evaluated in comparison to mothers' FAD reports as well as mothers' reports on two other family functioning measures: the Family Inventory of Life Events (FILE) and the Impact on Family (IOF) scale, both relevant to functioning in families with children with asthma. Although FAD scale reliabilities were lowest in younger children (alpha = 48-.79), good concurrent validity was found with mothers' reports on the three different measures of family functioning. Older childrens' FAD scales showed good reliability (> .70) but poorer agreement with the various maternal measures. With modifications to make items more structured and simplified, the FAD could be tried with younger children, although documentation of improved reliability is needed before more widespread use with school-aged children is advocated. The measure already shows good agreement with maternal report in this younger age group, which likely would be strengthened with improved reliability. FAD reports in older children correlated less well with maternal measures, but may represent nonredundant information on family health from an independent perspective and are worth considering in addition to mothers' perspectives.