Journal of pediatric rehabilitation medicine, Jan 20, 2017
Continence is low in individuals with spina bifida, but published prevalence varies markedly acro... more Continence is low in individuals with spina bifida, but published prevalence varies markedly across studies. The objective of this study was to examine bladder and bowel continence among patients served by multidisciplinary clinics participating in the National Spina Bifida Patient Registry and to examine whether variation in prevalence exists across clinics. Data were obtained from patients 5 years and older from March 2009 to December 2012. Data were gathered at clinic visits using standardized definitions. Data from 3252 individuals were included. Only 40.8% of participants were continent of urine; 43% were continent of stool. Bladder and bowel continence differed by spina bifida type, with those with myelomeningocele having significantly lower reported prevalence of continence than those with other forms of spina bifida. Bladder and bowel continence varied across registry sites. Adjustment based on demographic and condition-specific variables did not make substantive differences...
Achieving bladder continence among people with Spina bifida is a lifetime management goal. We inv... more Achieving bladder continence among people with Spina bifida is a lifetime management goal. We investigated bladder continence status over time and factors associated with this status among people with SB. We used National Spina Bifida Patient Registry data collected from 2009 through 2015 and applied generalized estimating equation models to analyze factors associated with bladder continence status. This analysis included 5,250 participants with SB in a large, multi-institutional patient registry who contributed 12,740 annual clinic visit records during the study period. At last follow-up, mean age was 16.6 years, 22.4% of the participants had undergone bladder continence surgery, 92.6% used some form of bladder management, and 45.8% reported bladder continence. In a multivariable regression model, the likelihood of bladder continence was significantly higher among those who were older, female, non-Hispanic white, had a non-myelomeningocele diagnosis, a lower level of lesion, a high...
American journal of medical genetics. Part A, Jan 27, 2017
Children with Smith-Lemli-Opitz syndrome (SLOS) are typically reported to have moderate to severe... more Children with Smith-Lemli-Opitz syndrome (SLOS) are typically reported to have moderate to severe intellectual disability. This study aims to determine whether normal cognitive function is possible in this population and to describe clinical, biochemical and molecular characteristics of children with SLOS and normal intelligent quotient (IQ). The study included children with SLOS who underwent cognitive testing in four centers. All children with at least one IQ composite score above 80 were included in the study. Six girls, three boys with SLOS were found to have normal or low-normal IQ in a cohort of 145 children with SLOS. Major/multiple organ anomalies and low serum cholesterol levels were uncommon. No correlation with IQ and genotype was evident and no specific developmental profile were observed. Thus, normal or low-normal cognitive function is possible in SLOS. Further studies are needed to elucidate factors contributing to normal or low-normal cognitive function in children w...
To assess parents' perceptions and utilization of Time-out (TO) in contrast to empirical indi... more To assess parents' perceptions and utilization of Time-out (TO) in contrast to empirical indications and examine the relationship between reported implementation procedures and perceived effectiveness. We surveyed parents of preschool and school-aged children (N=401, aged 15 months-10 years) at well-child visits with regards to their awareness, perception, and usage of TO. Parents were specifically surveyed regarding TO components that have been empirically evaluated or pertain directly to its underlying behavioral principles. Descriptive analyses, group comparisons, and correlational analyses were used to characterize responses and evaluate the relationship between TO administration variation and perceived effectiveness. Most parents (76.8%) reported using TO in response to misbehavior, but a large majority of these parents (84.9%) reported implementing TO in a manner counter to empirical evidence. Parents who endorsed TO as effective varied significantly from those who did not...
Journal of Developmental & Behavioral Pediatrics, 2016
Smith-Lemli-Opitz syndrome (SLOS) is a rare genetic disorder characterized by cholesterol synthes... more Smith-Lemli-Opitz syndrome (SLOS) is a rare genetic disorder characterized by cholesterol synthesis impairment. A host of physical, developmental, and behavioral presentations are associated with SLOS, many of which have been related with disorder severity. Sleep disturbance is commonly reported in SLOS. This study is the first to examine the association between sleep disturbance and biomarkers of cholesterol synthesis defect. Twenty youth with SLOS participated. Biomarkers of cholesterol synthesis were obtained, including plasma sterols (i.e., 7-dehydrocholesterol, 8-dehydrocholesterol, and cholesterol), mevalonic acid, and 24-S hydroxycholsterol. A ratio of plasma cholesterol precursors to cholesterol levels was used as a measure of biochemical severity. Parents reported their children's sleep problems using the Children's Sleep Habits Questionnaire. Most markers of cholesterol synthesis disruption were associated with overall sleep disturbance. Biochemical severity of SLOS was also associated with specific sleep problems (e.g., decreased sleep duration and increased sleep onset delay) and was identified as a significant predictor of these factors. This study is the first to demonstrate associative relationships between cholesterol levels and sleep disturbance in youth with SLOS. These results add to the current understanding of how cholesterol levels may contribute to the behavioral phenotype of SLOS. These findings may inform future studies related to the role cholesterol synthesis defects play in the behavioral phenotype of SLOS and, subsequently, modalities of intervention for behavioral symptoms.
In the last two decades, several authors have proposed conceptual models to explain the adverse e... more In the last two decades, several authors have proposed conceptual models to explain the adverse effects of child sexual abuse (CSA). Although conceptual models have been proposed from broadly behavioral perspectives (e.g., cognitive behavioral), as yet there is no comprehensive behavior analytic conceptualization of the effect of CSA. In this article, the behavior analytic mechanisms used to explain the development and maintenance of behavior are described, with specific reference to how the mechanisms provide a comprehensive means of accounting for adverse reactions following CSA.
Journal of Clinical Psychology in Medical Settings, Apr 19, 2009
Models of diabetes management in children emphasize family relationships, particularly parent-chi... more Models of diabetes management in children emphasize family relationships, particularly parent-child interactions. In adolescents, parental involvement in disease-specific management relates to better health and adherence. However, information about parental involvement in disease management for young children is limited and mixed. This study investigated behavior problems of school-aged children with Type 1 Diabetes Mellitus (T1DM) in association with parent discipline strategies and parents' perceptions of (1) time spent managing diabetes and (2) the impact their child's diabetes has on their discipline strategies. Parents of children ages 5-12 with T1DM completed standardized measures of child misbehavior, parent discipline strategies, and responded to questions regarding perceived time spent managing diabetes, and perceived impact of diabetes on ability to discipline. Results showed child mealtime misbehavior was common and associated with overreactive parental discipline. Further, overreactive discipline was also associated with reports of less time spent managing child's illness. Child misbehavior was positively associated with parents' perceived amount of time spent managing diabetes and with the impact of child diabetes on discipline. Findings suggest the importance of considering parent discipline strategies and child misbehavior when working with young children with diabetes.
Journal of diabetes science and technology, Jul 12, 2016
Adolescence is a developmental period associated with increased difficulty managing diabetes. Dur... more Adolescence is a developmental period associated with increased difficulty managing diabetes. During adolescence family functioning, including miscarried helping, family conflict, and acceptance of illness, is an important predictor of adherence to treatment recommendations. Multiple barriers exist to receiving behavioral health interventions to address suboptimal adherence. We hypothesized that behavioral family systems therapy-diabetes (BFST-D) delivered via telehealth would yield changes in family functioning that were not significantly different than changes in clinic-based treatment. Furthermore, that BFST-D would significantly improve overall family functioning. Ninety adolescent participants and their parents were randomized to receive BFST-D via telehealth or traditional (Clinic) treatment conditions. Repeated measures ANOVAs were used to assess changes in mean scores across pre, post, and follow-up assessments. Mediation analyses were conducted using methods outlined by Sob...
Developmental medicine and child neurology, Sep 15, 2016
Using the World Health Organization International Classification of Functioning, Disability and H... more Using the World Health Organization International Classification of Functioning, Disability and Health (ICF), the aim of this study was to identify effective strategies for managing urinary and bowel complications resulting from spina bifida. Charts of 210 children between 4- and 13-years-old with spina bifida were reviewed to quantify medical interventions and continence status. Standardized quality of life (QOL) questionnaires were administered to a subset of participants; child and parent interviews were carried out to examine the experience of living with bowel and bladder incontinence. Practitioners were also interviewed to understand their perspectives of intervention effectiveness. Chart review indicated less than half of children were continent for bowel and bladder. More variability existed in bowel continence programs, and practitioners considered bowel continence more difficult to achieve than bladder continence. No significant associations were found between continence s...
System requirements: World Wide Web browser and PDF reader. Mode of access: Available through the... more System requirements: World Wide Web browser and PDF reader. Mode of access: Available through the Internet. Title from document title page. "May 4, 1998." Document formatted into pages; contains vii, 121 p. Thesis (Ph. D.)--West Virginia University, 1998. Includes abstract. Includes bibliographical references (p. 58-64).
Typescript. Thesis (M.A.)--West Virginia University, 1995. Includes bibliographical references (l... more Typescript. Thesis (M.A.)--West Virginia University, 1995. Includes bibliographical references (leaves 70-74).
Journal of pediatric rehabilitation medicine, Jan 20, 2017
Continence is low in individuals with spina bifida, but published prevalence varies markedly acro... more Continence is low in individuals with spina bifida, but published prevalence varies markedly across studies. The objective of this study was to examine bladder and bowel continence among patients served by multidisciplinary clinics participating in the National Spina Bifida Patient Registry and to examine whether variation in prevalence exists across clinics. Data were obtained from patients 5 years and older from March 2009 to December 2012. Data were gathered at clinic visits using standardized definitions. Data from 3252 individuals were included. Only 40.8% of participants were continent of urine; 43% were continent of stool. Bladder and bowel continence differed by spina bifida type, with those with myelomeningocele having significantly lower reported prevalence of continence than those with other forms of spina bifida. Bladder and bowel continence varied across registry sites. Adjustment based on demographic and condition-specific variables did not make substantive differences...
Achieving bladder continence among people with Spina bifida is a lifetime management goal. We inv... more Achieving bladder continence among people with Spina bifida is a lifetime management goal. We investigated bladder continence status over time and factors associated with this status among people with SB. We used National Spina Bifida Patient Registry data collected from 2009 through 2015 and applied generalized estimating equation models to analyze factors associated with bladder continence status. This analysis included 5,250 participants with SB in a large, multi-institutional patient registry who contributed 12,740 annual clinic visit records during the study period. At last follow-up, mean age was 16.6 years, 22.4% of the participants had undergone bladder continence surgery, 92.6% used some form of bladder management, and 45.8% reported bladder continence. In a multivariable regression model, the likelihood of bladder continence was significantly higher among those who were older, female, non-Hispanic white, had a non-myelomeningocele diagnosis, a lower level of lesion, a high...
American journal of medical genetics. Part A, Jan 27, 2017
Children with Smith-Lemli-Opitz syndrome (SLOS) are typically reported to have moderate to severe... more Children with Smith-Lemli-Opitz syndrome (SLOS) are typically reported to have moderate to severe intellectual disability. This study aims to determine whether normal cognitive function is possible in this population and to describe clinical, biochemical and molecular characteristics of children with SLOS and normal intelligent quotient (IQ). The study included children with SLOS who underwent cognitive testing in four centers. All children with at least one IQ composite score above 80 were included in the study. Six girls, three boys with SLOS were found to have normal or low-normal IQ in a cohort of 145 children with SLOS. Major/multiple organ anomalies and low serum cholesterol levels were uncommon. No correlation with IQ and genotype was evident and no specific developmental profile were observed. Thus, normal or low-normal cognitive function is possible in SLOS. Further studies are needed to elucidate factors contributing to normal or low-normal cognitive function in children w...
To assess parents' perceptions and utilization of Time-out (TO) in contrast to empirical indi... more To assess parents' perceptions and utilization of Time-out (TO) in contrast to empirical indications and examine the relationship between reported implementation procedures and perceived effectiveness. We surveyed parents of preschool and school-aged children (N=401, aged 15 months-10 years) at well-child visits with regards to their awareness, perception, and usage of TO. Parents were specifically surveyed regarding TO components that have been empirically evaluated or pertain directly to its underlying behavioral principles. Descriptive analyses, group comparisons, and correlational analyses were used to characterize responses and evaluate the relationship between TO administration variation and perceived effectiveness. Most parents (76.8%) reported using TO in response to misbehavior, but a large majority of these parents (84.9%) reported implementing TO in a manner counter to empirical evidence. Parents who endorsed TO as effective varied significantly from those who did not...
Journal of Developmental & Behavioral Pediatrics, 2016
Smith-Lemli-Opitz syndrome (SLOS) is a rare genetic disorder characterized by cholesterol synthes... more Smith-Lemli-Opitz syndrome (SLOS) is a rare genetic disorder characterized by cholesterol synthesis impairment. A host of physical, developmental, and behavioral presentations are associated with SLOS, many of which have been related with disorder severity. Sleep disturbance is commonly reported in SLOS. This study is the first to examine the association between sleep disturbance and biomarkers of cholesterol synthesis defect. Twenty youth with SLOS participated. Biomarkers of cholesterol synthesis were obtained, including plasma sterols (i.e., 7-dehydrocholesterol, 8-dehydrocholesterol, and cholesterol), mevalonic acid, and 24-S hydroxycholsterol. A ratio of plasma cholesterol precursors to cholesterol levels was used as a measure of biochemical severity. Parents reported their children's sleep problems using the Children's Sleep Habits Questionnaire. Most markers of cholesterol synthesis disruption were associated with overall sleep disturbance. Biochemical severity of SLOS was also associated with specific sleep problems (e.g., decreased sleep duration and increased sleep onset delay) and was identified as a significant predictor of these factors. This study is the first to demonstrate associative relationships between cholesterol levels and sleep disturbance in youth with SLOS. These results add to the current understanding of how cholesterol levels may contribute to the behavioral phenotype of SLOS. These findings may inform future studies related to the role cholesterol synthesis defects play in the behavioral phenotype of SLOS and, subsequently, modalities of intervention for behavioral symptoms.
In the last two decades, several authors have proposed conceptual models to explain the adverse e... more In the last two decades, several authors have proposed conceptual models to explain the adverse effects of child sexual abuse (CSA). Although conceptual models have been proposed from broadly behavioral perspectives (e.g., cognitive behavioral), as yet there is no comprehensive behavior analytic conceptualization of the effect of CSA. In this article, the behavior analytic mechanisms used to explain the development and maintenance of behavior are described, with specific reference to how the mechanisms provide a comprehensive means of accounting for adverse reactions following CSA.
Journal of Clinical Psychology in Medical Settings, Apr 19, 2009
Models of diabetes management in children emphasize family relationships, particularly parent-chi... more Models of diabetes management in children emphasize family relationships, particularly parent-child interactions. In adolescents, parental involvement in disease-specific management relates to better health and adherence. However, information about parental involvement in disease management for young children is limited and mixed. This study investigated behavior problems of school-aged children with Type 1 Diabetes Mellitus (T1DM) in association with parent discipline strategies and parents' perceptions of (1) time spent managing diabetes and (2) the impact their child's diabetes has on their discipline strategies. Parents of children ages 5-12 with T1DM completed standardized measures of child misbehavior, parent discipline strategies, and responded to questions regarding perceived time spent managing diabetes, and perceived impact of diabetes on ability to discipline. Results showed child mealtime misbehavior was common and associated with overreactive parental discipline. Further, overreactive discipline was also associated with reports of less time spent managing child's illness. Child misbehavior was positively associated with parents' perceived amount of time spent managing diabetes and with the impact of child diabetes on discipline. Findings suggest the importance of considering parent discipline strategies and child misbehavior when working with young children with diabetes.
Journal of diabetes science and technology, Jul 12, 2016
Adolescence is a developmental period associated with increased difficulty managing diabetes. Dur... more Adolescence is a developmental period associated with increased difficulty managing diabetes. During adolescence family functioning, including miscarried helping, family conflict, and acceptance of illness, is an important predictor of adherence to treatment recommendations. Multiple barriers exist to receiving behavioral health interventions to address suboptimal adherence. We hypothesized that behavioral family systems therapy-diabetes (BFST-D) delivered via telehealth would yield changes in family functioning that were not significantly different than changes in clinic-based treatment. Furthermore, that BFST-D would significantly improve overall family functioning. Ninety adolescent participants and their parents were randomized to receive BFST-D via telehealth or traditional (Clinic) treatment conditions. Repeated measures ANOVAs were used to assess changes in mean scores across pre, post, and follow-up assessments. Mediation analyses were conducted using methods outlined by Sob...
Developmental medicine and child neurology, Sep 15, 2016
Using the World Health Organization International Classification of Functioning, Disability and H... more Using the World Health Organization International Classification of Functioning, Disability and Health (ICF), the aim of this study was to identify effective strategies for managing urinary and bowel complications resulting from spina bifida. Charts of 210 children between 4- and 13-years-old with spina bifida were reviewed to quantify medical interventions and continence status. Standardized quality of life (QOL) questionnaires were administered to a subset of participants; child and parent interviews were carried out to examine the experience of living with bowel and bladder incontinence. Practitioners were also interviewed to understand their perspectives of intervention effectiveness. Chart review indicated less than half of children were continent for bowel and bladder. More variability existed in bowel continence programs, and practitioners considered bowel continence more difficult to achieve than bladder continence. No significant associations were found between continence s...
System requirements: World Wide Web browser and PDF reader. Mode of access: Available through the... more System requirements: World Wide Web browser and PDF reader. Mode of access: Available through the Internet. Title from document title page. "May 4, 1998." Document formatted into pages; contains vii, 121 p. Thesis (Ph. D.)--West Virginia University, 1998. Includes abstract. Includes bibliographical references (p. 58-64).
Typescript. Thesis (M.A.)--West Virginia University, 1995. Includes bibliographical references (l... more Typescript. Thesis (M.A.)--West Virginia University, 1995. Includes bibliographical references (leaves 70-74).
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