Debra Lobato | Brown University (original) (raw)

Papers by Debra Lobato

Women’s Ethnicities, 2019

Journal of Autism and Developmental Disorders, 2021

Siblings describe positive and negative aspects of autism and often assume lifelong support roles... more Siblings describe positive and negative aspects of autism and often assume lifelong support roles. Less is known about cultural influences on sibling relationships. This qualitative study characterizes processes linking siblings' autism conceptualizations, sibling relationships, and self-concept using a multicultural framework. Siblings (12 Latino/a/x, 9 non-Latino/a/x white) participated. Data were stratified by ethnicity and analyzed using applied thematic analysis. Latino/a/x and non-Latino/a/x siblings described processes linking autism, relationships, and self-concept differently. Latino/a/x siblings emphasized family roles and identified as caregivers and protectors. Non-Latino/a/x siblings emphasized general sensitivity toward individuals who differed from themselves. Findings may reflect cultural differences in familism, caregiving expectations, and autism conceptualizations, thereby illuminating foundations of siblings' lifelong caregiving roles and highlighting the importance of culturally-sensitive, family-centered care.

Children's Health Care, 2016

The impact of dietary behaviors on health outcomes in youth with inflammatory bowel disease (IBD)... more The impact of dietary behaviors on health outcomes in youth with inflammatory bowel disease (IBD) is unclear. The present study examined dietary behaviors and their association with biomedical factors in youth with IBD. Eighty-six newly diagnosed youth (mean age =12.6) were included in analyses. Biomedical factors included disease activity and inflammatory markers. Despite adequate total caloric intake, estimated nutrient and fruit and vegetable intakes were below recommended levels. There was a significant negative association between vegetable intake and C-Reactive Protein (p=.04). Results suggest that dietary behaviors play an important role in IBD health outcomes.

Journal of Developmental & Behavioral Pediatrics, 2001

A geneticist and developmental pediatrician have created a resource that should be available in e... more A geneticist and developmental pediatrician have created a resource that should be available in every office that provides primary care to children. It is likely that developmental and behavioral pediatricians and other specialists who evaluate children with genetic syndromes or congenital anomalies will also find this book helpful. The first chapter of the book provides a brief review of some issues related to the clinical approach to treatment of the child with a genetic or metabolic disorder. The second chapter provides an overview of principles of evaluating children with disabilities and techniques for informing parents that their child has a disability. The third chapter provides the authors' rationale for developing the preventive management guidelines for children with genetic syndromes or congenital anomalies. The heart of the book is a set of four-to five-page clinically oriented summaries for 30 relatively common (incidence greater than 1 in 25,000 births) genetic syndromes, metabolic disorders, and congenital anomaly associations. Most busy practices will take care of at least a few children with some of these disorders. The summaries provide up-to-date information on the incidence, etiology, diagnostic evaluation, natural history, and complications for these disorders. For each of the disorders, the authors provide checklists that are designed to be copied (or printed from the CD-ROM provided with the book) and place in the child's chart. The checklists describe the specific concerns that should be addressed at each of the ages of standard well-child visits. Each checklist begins with a one-page summary of clinical concerns that would serve as an excellent reminder of common problems associated with one of these disorders. The checklists describe areas that should be screened, areas that should be evaluated, and suggested referrals. Developing the preventive checklists must have been a huge undertaking and their presence represents both a unique asset of the book and an opportunity to improve the book in the future. Only five of the disorders in the book have well-established preventive care guidelines, and in these cases, the guidelines in the book are consistent with the established guidelines. However, in the other cases, the authors had to develop the guidelines on their own. Although, in most cases, the guidelines seem reasonable, individuals knowledgeable about the disorders may have alternative recommendations. The clarity of the guidelines could be improved in some areas. Under the screening heading, the guidelines often include items that would be screened as part of routine pediatric care (growth, hearing, vision, head circumference), and it is not clear if the authors are suggesting that this routine screening is sufficient or if something unique should be done for children with specific disorders. The lack of specificity in recommendations to evaluate a certain area may also leave the physician unclear about what should be done. For example, recommendations to evaluate immunity or evaluate for sleep apnea may lead primary care providers to often ask ''How am I suppose to do this?'' and ''Is clinical history sufficient or do I need laboratory tests?'' To some extent these criticisms may represent limits in our current knowledge, and despite the criticisms, most physicians will find the guidelines very helpful in highlighting areas they should focus on during their evaluation of the child. A very nice feature of the book is that it is provided with a CD-ROM that contains the checklists and also handouts for parents about each of the 30 disorders. However, the handouts use a lot of text directly from the book, making them complex and most appropriate for families who already have significant medical knowledge. The book also provides briefer summaries of over 100 other less common disorders. These one-paragraph to onepage summaries highlight the most important clinical considerations regarding these disorders, but individuals caring for children with these disorders will need additional resources to guide their evaluation.

Journal of Developmental & Behavioral Pediatrics, 2011

Children with feeding problems often have multiple co-occurring medical and developmental conditi... more Children with feeding problems often have multiple co-occurring medical and developmental conditions; however, it is unknown whether patterns of comorbidity exist and whether they relate to important feeding-related health outcomes. The main objective of this study was to examine (1) the relationship between the number of medical and developmental comorbidities and important feeding-related health outcomes; (2) how various comorbidities interact and form empirically derived patterns; and (3) how empirically derived patterns of comorbidity relate to weight status, nutritional variety, and child and parent mealtime behavior problems. The medical records of 286 children (mean age = 35.56 months) seen at an outpatient feeding disorders clinic were reviewed. Child weight status, nutritional variety, and child and parent mealtime behavior problems were assessed using standardized measures. The lifetime occurrence of medical and developmental conditions was reliably coded. Empirically derived patterns of comorbidity were generated via latent class analyses. Latent class analyses generated 3 comorbidity patterns: "Behavioral" (58% of cases), "Developmentally Delayed" (37%), and "Autism Spectrum Disorder" (ASD, 5%). The Autism Spectrum Disorder group was found to have less nutritional variety compared to the Behavioral and Developmentally Delayed groups. No differences were found between groups in terms of percent ideal body weight, or severity of child or parent mealtime behavior problems. Multiple co-occurring conditions of children with feeding problems were empirically reduced to 3 patterns of comorbidities. Comorbidity patterns were largely unrelated to weight status and child or parent mealtime behavior problems. This suggests that medical and developmental conditions confer general, rather than specific, risk for feeding problems in children.

Inflammatory Bowel Diseases, 2014

Background-Previous investigations have produced mixed findings on whether youth with Inflammator... more Background-Previous investigations have produced mixed findings on whether youth with Inflammatory Bowel Disease (IBD) experience elevated rates of depressive symptoms. Our first aim was to compare self-report of depressive symptoms by youth with IBD to a community sample. The second aim was to examine the relationship between symptoms of depression and measures of disease activity. Methods-Item-level responses on the Children's Depression Inventory (CDI) among a sample of 78 youth diagnosed with IBD were compared to responses from a community sample using one-sample t-tests. Particular attention was given to items assessing somatic symptoms of depression given the potential overlap with IBD disease symptoms. The relationship between depressive symptoms and IBD disease activity was evaluated using Spearman's rank correlation coefficients and linear regression. Results-Youth with IBD reported lower levels of depressive symptoms compared to the community sample on the CDI Total Score, and similar or lower levels of difficulty on items assessing somatic symptoms. The majority of the sample had inactive or mild disease activity at the time of participation, with 14% experiencing moderate/severe disease activity. Higher ratings of disease activity were related to greater depressive symptoms. Responses on somatic items from the CDI were not differentially related to disease activity. Conclusions-As a group, pediatric patients with IBD did not experience clinical levels of depressive symptoms or elevations in depressive symptoms when compared to a community sample. Somatic symptoms of depression do not differentiate youth with IBD experiencing elevations in disease activity from youth experiencing non-somatic symptoms of depression.

Inflammatory Bowel Diseases, 2013

Thiopurine immunosuppressants such as 6-mercaptopurine (6-MP) are widely used to maintain remissi... more Thiopurine immunosuppressants such as 6-mercaptopurine (6-MP) are widely used to maintain remission in children with both Crohn's disease and ulcerative colitis. Therapeutic efficacy is associated with higher red blood cell levels of the thiopurine metabolite 6-thioguanine (6-TGN). Studies in both children and adults have inexplicably failed to demonstrate a significant correlation between prescribed dose and level of 6-TGN. We aimed to quantify the relationship between 6-TGN levels and adherence. We used electronic monitoring devices to assess adherence in children and adolescents with inflammatory bowel diseases who were prescribed 6-MP. During 3230 days of monitoring in 19 subjects, adherence to 6-MP was 74.2%. Due to the generally low adherence to the prescribed dose of 6-MP, the 6-TGN level was not correlated with the prescribed dose. The 6-TGN level was significantly correlated with the adherence-adjusted dose (R(2) = 0.395). It was also significantly correlated to adherence alone (R(2) = 0.478). Adherence to 5-aminosalicylic acid and 6-MP were significantly positively correlated (r(s)(9) = 0.82, P = 0.00), and a significant relationship was found between 5-aminosalicylic acid adherence and 6-TGN levels independent of 6-MP adherence. Furthermore, low adherence to 6-MP was associated with increased likelihood of escalation of medical therapy. Red blood cell 6-TGN levels are strongly correlated with the dose, when the dose is actually taken. Lack of efficacy of thiopurines may often be the result of poor adherence. Novel ways of assessing and improving adherence are necessary. Future trials should assess adherence in study participants. Intake of 5-aminosalicylic acid positively influences 6-TGN levels.

Inflammatory Bowel Diseases, 2013

BACKGROUND & AIMS-Symptoms of Inflammatory Bowel Disease (IBD) include bloody diarrhea, fatigue, ... more BACKGROUND & AIMS-Symptoms of Inflammatory Bowel Disease (IBD) include bloody diarrhea, fatigue, abdominal pain and weight loss. Long-term management of remission for most patients requires adherence to taking one or more oral medications daily, in the absence of symptoms. We investigated whether disease characteristics and behavioral characteristics predict adherence to prescribed medical regimes. METHODS-Patients 8 to 17.5 years of age, newly diagnosed with IBD as well as a matched cohort previously diagnosed were studied over a 6-month period. Adherence was assessed using medication electronic monitoring devices (MEMS); participants and parents completed questionnaires regarding emotional and behavioral functioning, and biological parameters were monitored.

Inflammatory Bowel Diseases, 2011

to ' 'extremely satisfied' '). The satisfaction variable was dichotomized into ' 'not very satisf... more to ' 'extremely satisfied' '). The satisfaction variable was dichotomized into ' 'not very satisfied' '' and ' 'very satisfied' '. The Medical Outcomes Study (MOS) questionnaire and Inflammatory Bowel Disease Questionnaire (IBDQ) were used to assess QOL. Work productivity was assessed using the Work Productivity and Activity Impairment (WPAI) questionnaire. To measure healthcare resource utilization, the mean number of IBD-related healthcare provider visits in the past six months was calculated, as well as the number of emergency room (ER) visits and hospital visits in the past six months. Bivariate differences between the two satisfaction groups for resource utilization, QOL and productivity were assessed using chi-square tests for categorical variables and t-tests for continuous variables. RESULTS: A total of 783 patients with ulcerative colitis and 778 patients with Crohn's disease participated in the study. Of these patients, 15% (232/1,561) reported currently using a biologic treatment (infliximab, adalimumab, certolizumab pegol, or natalizumab) and were included in this analysis. Approximately 53% of these patients (n¼124/232) were ' 'very satisfied' ' with their current medication. ' 'Very satisfied' ' patients were more likely to be female, have fewer comorbidities, report milder disease severity, and experience less frequent flares, as compared to ' 'not very satisfied' ' patients (p<0.05). Significantly more of the ' 'very satisfied' ' patients reported no ER visits during the past six months compared to the ' 'not very satisfied' ' patients (83% vs 65%, p<0.05). ' 'Very satisfied' ' patients also had fewer provider visits (2.04 vs 3.3, p<0.05). However, hospital utilization was similar across the two groups. Those patients who were ' 'very satisfied' ' had significantly higher QOL as well, as measured both by the MOS questionnaire and the IBDQ. Specifically, ' 'very satisfied' ' patients scored significantly better than ' 'not very satisfied' ' patients in all of the MOS subscales (p<0.05), except for health transition. The ' 'very satisfied' ' patients also scored significantly better in each of the IBDQ subscales (p<0.05). In addition, ' 'very satisfied' ' patients, regardless of current employment status, reported significantly less activity impairment compared to ' 'not very satisfied' ' patients, (p<0.05). Among currently employed patients (n¼142), ' 'very satisfied' ' patients also reported significantly less absenteeism, presenteeism, and work loss (p<0.05). CONCLUSIONS: Among patients with IBD receiving biologic therapy, those patients ' 'very satisfied' ' with current medication reported fewer ER and provider visits, mostly higher QOL and lower productivity impairment as compared to ' 'not very satisfied' ' patients. The association of biologic treatment satisfaction with healthcare resource utilization, QOL and productivity underscores its potential relevance for not only patients and physicians, but employers and payers as well.

Inflammatory Bowel Diseases, 2012

BACKGROUND: The REACH study helped determine the efficacy and safety of infliximab in patients 6-... more BACKGROUND: The REACH study helped determine the efficacy and safety of infliximab in patients 6-17 years of age. The dosing, including induction, was found to be similar to adult dosing. This study also demonstrated an incidence of serious infections at 5.7%. The most prevalent adverse events were respiratory infections. In 2012, deBie et al. reviewed the literature on the use of anti-TNF medications in pediatric IBD and found adjustments in dosing between 27-49% of the time. The median time to dose adjustment was 6-9 months. After initiation of infliximab, intestinal surgery was performed in 25-35% of patients with Crohn’s disease. There are no reports on the use of infliximab in patients less than 6 years of age. METHODS: This was a descriptive, retrospective chart review of patients with IBD receiving infliximab as standard care for treatment of IBD from June 2002July 2012. RESULTS: Since 2002, our institution has diagnosed 790 patients with IBD; 50 patients (6%) were under 6 years of age at the time of diagnosis. 13 (26%) of these patients with IBD received infliximab when they were less than 6 years of age; 8 diagnosed with Crohn’s disease, 3 with UC, and 2 with indeterminant colitis. The age at diagnosis ranged from 11 months to 66 months with a mean of 37 months. 12 patients presented with bloody diarrhea. The age infliximab was initiated ranged from 15 months to 69 months with a mean of 46 months. 7 patients received monotherapy. Prior to 2008, infliximab was given in combination with mercaptopurine in one patient and azathioprine in 3 patients. Since 2008, methotrexate was given in combination with infliximab in two patients. The number of doses of infliximab given ranged from 2 to 38 with dosage ranges of 4.7 mg/kg to 13 mg/kg. The doses were adjusted in 6 patients, 4 with success. Two patients still on infliximab have not had dose adjustments due to high initial doses (9.3 mg/kg and 12.5 mg/kg). Seven patients had colectomies; two diagnosed with UC, two indeterminant colitis, two diagnosed with Crohn’s after an initial diagnosis of UC, and one patient with severe perianal Crohn’s disease. Six of the patients requiring colectomy were prior to 2008; only one out of 7 patients in the past 4 years required a colectomy. Two patients developed hives after 6-7 doses and one had an acute infusion reaction with facial swelling and desaturation. Other potential complications were limited to one patient with mycoplasma pneumonia, one with recurrent UTIs, and one with recurrent Clostridium difficile. The patient with severe perianal disease has since been diagnosed with IL10RA. CONCLUSION(S): Infliximab was used successfully in 6 out of 7 patients with IBD in the past 4 years. All six patients who received infliximab prior to 2008 went on to colectomy.

Inflammatory Bowel Diseases, 2012

BACKGROUND: Recent studies suggest an increasing incidence of inflammatory bowel disease (IBD) in... more BACKGROUND: Recent studies suggest an increasing incidence of inflammatory bowel disease (IBD) in children. However, the impact of this increase on the secular trends of inpatient care and disease burden in hospitalized children with IBD is unknown. Therefore, the aims of this study were to evaluate the rate of hospitalization and disease behavior in hospitalized children with IBD in the United States from 2000 to 2009. METHODS: We used the U.S. Healthcare Cost and Utilization Project Kids’ Inpatient Database. Data were weighted to generate national-level estimates. RESULTS: We identified 61,779 cases of pediatric IBD during four triennial periods from 2000 to 2009. During the period of study, the rate of hospitalization of children with any diagnosis of IBD increased from 43.6 to 72.0 (cases per 10,000 total hospitalizations entered into the database per year; 2000 vs. 2009; P <0.001). Specifically, for Crohn’s disease (CD) the rate increased from 28.3 to 45.7 (P <0.001) and for ulcerative colitis (UC) 15.2 to 26.1 (P <0.001). There was an increasing trend in the rate of hospitalization in pediatric cases of IBD overall, and CD and UC individually (evaluation of entire time period, Cochran-Armitage test for trend, P <0.001 for each disease). The age distribution of hospitalized children with IBD did not change over the decade of study. Mortality (1 per 1,000 cases of IBD) and length of hospital stay (LOS; median, 4 days) remained constant. Hospitalization charges (adjusted for inflation) increased (median, 11,614to11,614 to 11,614to20,724, P <0.001). Significant increasing trends were found for comorbid disease burden and systemic complications (including electrolyte disturbances and anemia), and the need for blood transfusion and parenteral nutrition (P <0.001 for each). There, also, was an increase in the number of cases with fistulae, obstruction, and perianal disease (P <0.001 for each). In comparison of IBD and non-IBD cases, those with IBD had lower mortality, longer LOS, and higher charges (P <0.001 for each). Case-control matching demonstrated a lower risk of death (adjusted odds ratio, aOR 0.25, 95% CI, 0.20-0.31), longer LOS (aOR 2.48, 95% CI, 2.40-2.50), and higher charges (aOR 1.92, 95% CI, 1.88-1.96) in those with IBD. CONCLUSION(S): These results demonstrate an increasing trend in the number of pediatric cases with IBD admitted to the hospital from 2000 to 2009. Moreover, we found an increasing trend in disease-specific and systemic complications in these children along with an increasing cost of the hospital stay. These findings are consistent with earlier studies demonstrating that the epidemiology of pediatric IBD is changing as demonstrated by an increase in hospitalized cases. Also, these data suggest there has been an increase in the severity and frequency of complicated disease.

Developmental Medicine & Child Neurology, 2008

Thirty low-birthweight (less than 1500g) infants (15 with bronchopulmonary dysplasia (BPD), and 1... more Thirty low-birthweight (less than 1500g) infants (15 with bronchopulmonary dysplasia (BPD), and 15 controls less than or equal to 5 days O2) and 15 fullterm controls were evaluated at 10 to 12 years of age. BPD children weighted less than fullterm children and had smaller head circumferences than either preterm or fullterm controls. They also had significantly more neurological abnormality than both control groups. BPD children and preterm controls had lower WISC-R arithmetic scores and lower Beery VMI scores, as well as greater need of resources and special education compared with fullterm controls. BPD survivors at 10 to 12 years of age continue to manifest sequelae related to their early pulmonary disease.

Children's Health Care, 2009

A comprehensive model is presented that (a) highlights factors that have been implicated in the d... more A comprehensive model is presented that (a) highlights factors that have been implicated in the development and maintenance of feeding problems in both normal and clinical populations; and (b) provides a framework for the prevention, management, and treatment of feeding problems across the range of physically healthy children to children with acute and chronic illnesses. Relevant literatures and feeding models

Child: Care, Health and Development, 2011

Objective-This qualitative study explored the experiences of Latino siblings of children with dev... more Objective-This qualitative study explored the experiences of Latino siblings of children with developmental disabilities. Methods-Parents and typically developing siblings from 15 Latino families with a child with a developmental disability participated in separate interviews. Results-Using Consensual Qualitative Research methodology (Hill, Thompson, & Williams, 1997), domains reflecting siblings' relationships, emotional experiences, and communication about the disability were identified. The child's need for caregiving was a prominent topic in the sibling and parent narratives. Parents reported concerns about siblings' experience of differential treatment whereas siblings reported concerns about restricted social activities because of their brother/sister. Conclusions-Including multiple informants revealed commonalities and differences in parents' and siblings' perspectives on the impact of a child's disability. The importance of considering sibling adaptation in sociocultural context is discussed.

Alimentary Pharmacology & Therapeutics, 2019

Background: Medication non-adherence in paediatric ulcerative colitis (UC) has been associated wi... more Background: Medication non-adherence in paediatric ulcerative colitis (UC) has been associated with negative health outcomes including flares in disease activity. However, no studies to date have examined longitudinal adherence to maintenance medication in a prospective controlled trial. Aims: To determine whether objectively measured adherence to standardised mesalazine (mesalamine) therapy over time was related to remission at 52 weeks and the need for treatment escalation in newly diagnosed paediatric patients with UC. Methods: PROTECT (NCT01536535) was a prospective, inception cohort, multi-site study of paediatric patients aged 4-17 years with newly diagnosed UC followed for 52 weeks. Patients received standardised mesalazine, with pre-established criteria for escalation to thiopurines or anti-TNFα inhibitors. Patients used pill bottles with electronic caps to monitor mesalazine adherence. We tested whether longitudinal adherence to mesalazine predicted steroid-free remission at week 52 (i.e. quiescent disease on mesalazine alone with no corticosteroids ≥4 weeks prior) and need for treatment escalation (i.e. introduction of immunomodulators, calcineurin-inhibitors or anti-TNFα inhibitors). Results: Among 268 patients, average mesalazine adherence trajectories did not predict week 52 steroid-free remission. Declining adherence over time strongly predicted treatment escalation (β = −.037, P = .001). By month 6, adherence rate ≤85.7% was associated with treatment escalation.

No wonder you activities are, reading will be always needed. It is not only to fulfil the duties ... more No wonder you activities are, reading will be always needed. It is not only to fulfil the duties that you need to finish in deadline time. Reading will encourage your mind and thoughts. Of course, reading will greatly develop your experiences about everything. Reading brothers sisters and special needs information and activities for helping young siblings of children with chronic illnesses and developmental disabilities is also a way as one of the collective books that gives many advantages. The advantages are not only for you, but for the other peoples with those meaningful benefits.

Education and Treatment of Children, 1985

Journal of Autism and Developmental Disorders, 1985

Women’s Ethnicities, 2019

Journal of Autism and Developmental Disorders, 2021

Siblings describe positive and negative aspects of autism and often assume lifelong support roles... more Siblings describe positive and negative aspects of autism and often assume lifelong support roles. Less is known about cultural influences on sibling relationships. This qualitative study characterizes processes linking siblings' autism conceptualizations, sibling relationships, and self-concept using a multicultural framework. Siblings (12 Latino/a/x, 9 non-Latino/a/x white) participated. Data were stratified by ethnicity and analyzed using applied thematic analysis. Latino/a/x and non-Latino/a/x siblings described processes linking autism, relationships, and self-concept differently. Latino/a/x siblings emphasized family roles and identified as caregivers and protectors. Non-Latino/a/x siblings emphasized general sensitivity toward individuals who differed from themselves. Findings may reflect cultural differences in familism, caregiving expectations, and autism conceptualizations, thereby illuminating foundations of siblings' lifelong caregiving roles and highlighting the importance of culturally-sensitive, family-centered care.

Children's Health Care, 2016

The impact of dietary behaviors on health outcomes in youth with inflammatory bowel disease (IBD)... more The impact of dietary behaviors on health outcomes in youth with inflammatory bowel disease (IBD) is unclear. The present study examined dietary behaviors and their association with biomedical factors in youth with IBD. Eighty-six newly diagnosed youth (mean age =12.6) were included in analyses. Biomedical factors included disease activity and inflammatory markers. Despite adequate total caloric intake, estimated nutrient and fruit and vegetable intakes were below recommended levels. There was a significant negative association between vegetable intake and C-Reactive Protein (p=.04). Results suggest that dietary behaviors play an important role in IBD health outcomes.

Journal of Developmental & Behavioral Pediatrics, 2001

A geneticist and developmental pediatrician have created a resource that should be available in e... more A geneticist and developmental pediatrician have created a resource that should be available in every office that provides primary care to children. It is likely that developmental and behavioral pediatricians and other specialists who evaluate children with genetic syndromes or congenital anomalies will also find this book helpful. The first chapter of the book provides a brief review of some issues related to the clinical approach to treatment of the child with a genetic or metabolic disorder. The second chapter provides an overview of principles of evaluating children with disabilities and techniques for informing parents that their child has a disability. The third chapter provides the authors' rationale for developing the preventive management guidelines for children with genetic syndromes or congenital anomalies. The heart of the book is a set of four-to five-page clinically oriented summaries for 30 relatively common (incidence greater than 1 in 25,000 births) genetic syndromes, metabolic disorders, and congenital anomaly associations. Most busy practices will take care of at least a few children with some of these disorders. The summaries provide up-to-date information on the incidence, etiology, diagnostic evaluation, natural history, and complications for these disorders. For each of the disorders, the authors provide checklists that are designed to be copied (or printed from the CD-ROM provided with the book) and place in the child's chart. The checklists describe the specific concerns that should be addressed at each of the ages of standard well-child visits. Each checklist begins with a one-page summary of clinical concerns that would serve as an excellent reminder of common problems associated with one of these disorders. The checklists describe areas that should be screened, areas that should be evaluated, and suggested referrals. Developing the preventive checklists must have been a huge undertaking and their presence represents both a unique asset of the book and an opportunity to improve the book in the future. Only five of the disorders in the book have well-established preventive care guidelines, and in these cases, the guidelines in the book are consistent with the established guidelines. However, in the other cases, the authors had to develop the guidelines on their own. Although, in most cases, the guidelines seem reasonable, individuals knowledgeable about the disorders may have alternative recommendations. The clarity of the guidelines could be improved in some areas. Under the screening heading, the guidelines often include items that would be screened as part of routine pediatric care (growth, hearing, vision, head circumference), and it is not clear if the authors are suggesting that this routine screening is sufficient or if something unique should be done for children with specific disorders. The lack of specificity in recommendations to evaluate a certain area may also leave the physician unclear about what should be done. For example, recommendations to evaluate immunity or evaluate for sleep apnea may lead primary care providers to often ask ''How am I suppose to do this?'' and ''Is clinical history sufficient or do I need laboratory tests?'' To some extent these criticisms may represent limits in our current knowledge, and despite the criticisms, most physicians will find the guidelines very helpful in highlighting areas they should focus on during their evaluation of the child. A very nice feature of the book is that it is provided with a CD-ROM that contains the checklists and also handouts for parents about each of the 30 disorders. However, the handouts use a lot of text directly from the book, making them complex and most appropriate for families who already have significant medical knowledge. The book also provides briefer summaries of over 100 other less common disorders. These one-paragraph to onepage summaries highlight the most important clinical considerations regarding these disorders, but individuals caring for children with these disorders will need additional resources to guide their evaluation.

Journal of Developmental & Behavioral Pediatrics, 2011

Children with feeding problems often have multiple co-occurring medical and developmental conditi... more Children with feeding problems often have multiple co-occurring medical and developmental conditions; however, it is unknown whether patterns of comorbidity exist and whether they relate to important feeding-related health outcomes. The main objective of this study was to examine (1) the relationship between the number of medical and developmental comorbidities and important feeding-related health outcomes; (2) how various comorbidities interact and form empirically derived patterns; and (3) how empirically derived patterns of comorbidity relate to weight status, nutritional variety, and child and parent mealtime behavior problems. The medical records of 286 children (mean age = 35.56 months) seen at an outpatient feeding disorders clinic were reviewed. Child weight status, nutritional variety, and child and parent mealtime behavior problems were assessed using standardized measures. The lifetime occurrence of medical and developmental conditions was reliably coded. Empirically derived patterns of comorbidity were generated via latent class analyses. Latent class analyses generated 3 comorbidity patterns: &amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;quot;Behavioral&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;quot; (58% of cases), &amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;quot;Developmentally Delayed&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;quot; (37%), and &amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;quot;Autism Spectrum Disorder&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;quot; (ASD, 5%). The Autism Spectrum Disorder group was found to have less nutritional variety compared to the Behavioral and Developmentally Delayed groups. No differences were found between groups in terms of percent ideal body weight, or severity of child or parent mealtime behavior problems. Multiple co-occurring conditions of children with feeding problems were empirically reduced to 3 patterns of comorbidities. Comorbidity patterns were largely unrelated to weight status and child or parent mealtime behavior problems. This suggests that medical and developmental conditions confer general, rather than specific, risk for feeding problems in children.

Inflammatory Bowel Diseases, 2014

Background-Previous investigations have produced mixed findings on whether youth with Inflammator... more Background-Previous investigations have produced mixed findings on whether youth with Inflammatory Bowel Disease (IBD) experience elevated rates of depressive symptoms. Our first aim was to compare self-report of depressive symptoms by youth with IBD to a community sample. The second aim was to examine the relationship between symptoms of depression and measures of disease activity. Methods-Item-level responses on the Children's Depression Inventory (CDI) among a sample of 78 youth diagnosed with IBD were compared to responses from a community sample using one-sample t-tests. Particular attention was given to items assessing somatic symptoms of depression given the potential overlap with IBD disease symptoms. The relationship between depressive symptoms and IBD disease activity was evaluated using Spearman's rank correlation coefficients and linear regression. Results-Youth with IBD reported lower levels of depressive symptoms compared to the community sample on the CDI Total Score, and similar or lower levels of difficulty on items assessing somatic symptoms. The majority of the sample had inactive or mild disease activity at the time of participation, with 14% experiencing moderate/severe disease activity. Higher ratings of disease activity were related to greater depressive symptoms. Responses on somatic items from the CDI were not differentially related to disease activity. Conclusions-As a group, pediatric patients with IBD did not experience clinical levels of depressive symptoms or elevations in depressive symptoms when compared to a community sample. Somatic symptoms of depression do not differentiate youth with IBD experiencing elevations in disease activity from youth experiencing non-somatic symptoms of depression.

Inflammatory Bowel Diseases, 2013

Thiopurine immunosuppressants such as 6-mercaptopurine (6-MP) are widely used to maintain remissi... more Thiopurine immunosuppressants such as 6-mercaptopurine (6-MP) are widely used to maintain remission in children with both Crohn&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39;s disease and ulcerative colitis. Therapeutic efficacy is associated with higher red blood cell levels of the thiopurine metabolite 6-thioguanine (6-TGN). Studies in both children and adults have inexplicably failed to demonstrate a significant correlation between prescribed dose and level of 6-TGN. We aimed to quantify the relationship between 6-TGN levels and adherence. We used electronic monitoring devices to assess adherence in children and adolescents with inflammatory bowel diseases who were prescribed 6-MP. During 3230 days of monitoring in 19 subjects, adherence to 6-MP was 74.2%. Due to the generally low adherence to the prescribed dose of 6-MP, the 6-TGN level was not correlated with the prescribed dose. The 6-TGN level was significantly correlated with the adherence-adjusted dose (R(2) = 0.395). It was also significantly correlated to adherence alone (R(2) = 0.478). Adherence to 5-aminosalicylic acid and 6-MP were significantly positively correlated (r(s)(9) = 0.82, P = 0.00), and a significant relationship was found between 5-aminosalicylic acid adherence and 6-TGN levels independent of 6-MP adherence. Furthermore, low adherence to 6-MP was associated with increased likelihood of escalation of medical therapy. Red blood cell 6-TGN levels are strongly correlated with the dose, when the dose is actually taken. Lack of efficacy of thiopurines may often be the result of poor adherence. Novel ways of assessing and improving adherence are necessary. Future trials should assess adherence in study participants. Intake of 5-aminosalicylic acid positively influences 6-TGN levels.

Inflammatory Bowel Diseases, 2013

BACKGROUND & AIMS-Symptoms of Inflammatory Bowel Disease (IBD) include bloody diarrhea, fatigue, ... more BACKGROUND & AIMS-Symptoms of Inflammatory Bowel Disease (IBD) include bloody diarrhea, fatigue, abdominal pain and weight loss. Long-term management of remission for most patients requires adherence to taking one or more oral medications daily, in the absence of symptoms. We investigated whether disease characteristics and behavioral characteristics predict adherence to prescribed medical regimes. METHODS-Patients 8 to 17.5 years of age, newly diagnosed with IBD as well as a matched cohort previously diagnosed were studied over a 6-month period. Adherence was assessed using medication electronic monitoring devices (MEMS); participants and parents completed questionnaires regarding emotional and behavioral functioning, and biological parameters were monitored.

Inflammatory Bowel Diseases, 2011

to ' 'extremely satisfied' '). The satisfaction variable was dichotomized into ' 'not very satisf... more to ' 'extremely satisfied' '). The satisfaction variable was dichotomized into ' 'not very satisfied' '' and ' 'very satisfied' '. The Medical Outcomes Study (MOS) questionnaire and Inflammatory Bowel Disease Questionnaire (IBDQ) were used to assess QOL. Work productivity was assessed using the Work Productivity and Activity Impairment (WPAI) questionnaire. To measure healthcare resource utilization, the mean number of IBD-related healthcare provider visits in the past six months was calculated, as well as the number of emergency room (ER) visits and hospital visits in the past six months. Bivariate differences between the two satisfaction groups for resource utilization, QOL and productivity were assessed using chi-square tests for categorical variables and t-tests for continuous variables. RESULTS: A total of 783 patients with ulcerative colitis and 778 patients with Crohn's disease participated in the study. Of these patients, 15% (232/1,561) reported currently using a biologic treatment (infliximab, adalimumab, certolizumab pegol, or natalizumab) and were included in this analysis. Approximately 53% of these patients (n¼124/232) were ' 'very satisfied' ' with their current medication. ' 'Very satisfied' ' patients were more likely to be female, have fewer comorbidities, report milder disease severity, and experience less frequent flares, as compared to ' 'not very satisfied' ' patients (p<0.05). Significantly more of the ' 'very satisfied' ' patients reported no ER visits during the past six months compared to the ' 'not very satisfied' ' patients (83% vs 65%, p<0.05). ' 'Very satisfied' ' patients also had fewer provider visits (2.04 vs 3.3, p<0.05). However, hospital utilization was similar across the two groups. Those patients who were ' 'very satisfied' ' had significantly higher QOL as well, as measured both by the MOS questionnaire and the IBDQ. Specifically, ' 'very satisfied' ' patients scored significantly better than ' 'not very satisfied' ' patients in all of the MOS subscales (p<0.05), except for health transition. The ' 'very satisfied' ' patients also scored significantly better in each of the IBDQ subscales (p<0.05). In addition, ' 'very satisfied' ' patients, regardless of current employment status, reported significantly less activity impairment compared to ' 'not very satisfied' ' patients, (p<0.05). Among currently employed patients (n¼142), ' 'very satisfied' ' patients also reported significantly less absenteeism, presenteeism, and work loss (p<0.05). CONCLUSIONS: Among patients with IBD receiving biologic therapy, those patients ' 'very satisfied' ' with current medication reported fewer ER and provider visits, mostly higher QOL and lower productivity impairment as compared to ' 'not very satisfied' ' patients. The association of biologic treatment satisfaction with healthcare resource utilization, QOL and productivity underscores its potential relevance for not only patients and physicians, but employers and payers as well.

Inflammatory Bowel Diseases, 2012

BACKGROUND: The REACH study helped determine the efficacy and safety of infliximab in patients 6-... more BACKGROUND: The REACH study helped determine the efficacy and safety of infliximab in patients 6-17 years of age. The dosing, including induction, was found to be similar to adult dosing. This study also demonstrated an incidence of serious infections at 5.7%. The most prevalent adverse events were respiratory infections. In 2012, deBie et al. reviewed the literature on the use of anti-TNF medications in pediatric IBD and found adjustments in dosing between 27-49% of the time. The median time to dose adjustment was 6-9 months. After initiation of infliximab, intestinal surgery was performed in 25-35% of patients with Crohn’s disease. There are no reports on the use of infliximab in patients less than 6 years of age. METHODS: This was a descriptive, retrospective chart review of patients with IBD receiving infliximab as standard care for treatment of IBD from June 2002July 2012. RESULTS: Since 2002, our institution has diagnosed 790 patients with IBD; 50 patients (6%) were under 6 years of age at the time of diagnosis. 13 (26%) of these patients with IBD received infliximab when they were less than 6 years of age; 8 diagnosed with Crohn’s disease, 3 with UC, and 2 with indeterminant colitis. The age at diagnosis ranged from 11 months to 66 months with a mean of 37 months. 12 patients presented with bloody diarrhea. The age infliximab was initiated ranged from 15 months to 69 months with a mean of 46 months. 7 patients received monotherapy. Prior to 2008, infliximab was given in combination with mercaptopurine in one patient and azathioprine in 3 patients. Since 2008, methotrexate was given in combination with infliximab in two patients. The number of doses of infliximab given ranged from 2 to 38 with dosage ranges of 4.7 mg/kg to 13 mg/kg. The doses were adjusted in 6 patients, 4 with success. Two patients still on infliximab have not had dose adjustments due to high initial doses (9.3 mg/kg and 12.5 mg/kg). Seven patients had colectomies; two diagnosed with UC, two indeterminant colitis, two diagnosed with Crohn’s after an initial diagnosis of UC, and one patient with severe perianal Crohn’s disease. Six of the patients requiring colectomy were prior to 2008; only one out of 7 patients in the past 4 years required a colectomy. Two patients developed hives after 6-7 doses and one had an acute infusion reaction with facial swelling and desaturation. Other potential complications were limited to one patient with mycoplasma pneumonia, one with recurrent UTIs, and one with recurrent Clostridium difficile. The patient with severe perianal disease has since been diagnosed with IL10RA. CONCLUSION(S): Infliximab was used successfully in 6 out of 7 patients with IBD in the past 4 years. All six patients who received infliximab prior to 2008 went on to colectomy.

Inflammatory Bowel Diseases, 2012

BACKGROUND: Recent studies suggest an increasing incidence of inflammatory bowel disease (IBD) in... more BACKGROUND: Recent studies suggest an increasing incidence of inflammatory bowel disease (IBD) in children. However, the impact of this increase on the secular trends of inpatient care and disease burden in hospitalized children with IBD is unknown. Therefore, the aims of this study were to evaluate the rate of hospitalization and disease behavior in hospitalized children with IBD in the United States from 2000 to 2009. METHODS: We used the U.S. Healthcare Cost and Utilization Project Kids’ Inpatient Database. Data were weighted to generate national-level estimates. RESULTS: We identified 61,779 cases of pediatric IBD during four triennial periods from 2000 to 2009. During the period of study, the rate of hospitalization of children with any diagnosis of IBD increased from 43.6 to 72.0 (cases per 10,000 total hospitalizations entered into the database per year; 2000 vs. 2009; P <0.001). Specifically, for Crohn’s disease (CD) the rate increased from 28.3 to 45.7 (P <0.001) and for ulcerative colitis (UC) 15.2 to 26.1 (P <0.001). There was an increasing trend in the rate of hospitalization in pediatric cases of IBD overall, and CD and UC individually (evaluation of entire time period, Cochran-Armitage test for trend, P <0.001 for each disease). The age distribution of hospitalized children with IBD did not change over the decade of study. Mortality (1 per 1,000 cases of IBD) and length of hospital stay (LOS; median, 4 days) remained constant. Hospitalization charges (adjusted for inflation) increased (median, 11,614to11,614 to 11,614to20,724, P <0.001). Significant increasing trends were found for comorbid disease burden and systemic complications (including electrolyte disturbances and anemia), and the need for blood transfusion and parenteral nutrition (P <0.001 for each). There, also, was an increase in the number of cases with fistulae, obstruction, and perianal disease (P <0.001 for each). In comparison of IBD and non-IBD cases, those with IBD had lower mortality, longer LOS, and higher charges (P <0.001 for each). Case-control matching demonstrated a lower risk of death (adjusted odds ratio, aOR 0.25, 95% CI, 0.20-0.31), longer LOS (aOR 2.48, 95% CI, 2.40-2.50), and higher charges (aOR 1.92, 95% CI, 1.88-1.96) in those with IBD. CONCLUSION(S): These results demonstrate an increasing trend in the number of pediatric cases with IBD admitted to the hospital from 2000 to 2009. Moreover, we found an increasing trend in disease-specific and systemic complications in these children along with an increasing cost of the hospital stay. These findings are consistent with earlier studies demonstrating that the epidemiology of pediatric IBD is changing as demonstrated by an increase in hospitalized cases. Also, these data suggest there has been an increase in the severity and frequency of complicated disease.

Developmental Medicine & Child Neurology, 2008

Thirty low-birthweight (less than 1500g) infants (15 with bronchopulmonary dysplasia (BPD), and 1... more Thirty low-birthweight (less than 1500g) infants (15 with bronchopulmonary dysplasia (BPD), and 15 controls less than or equal to 5 days O2) and 15 fullterm controls were evaluated at 10 to 12 years of age. BPD children weighted less than fullterm children and had smaller head circumferences than either preterm or fullterm controls. They also had significantly more neurological abnormality than both control groups. BPD children and preterm controls had lower WISC-R arithmetic scores and lower Beery VMI scores, as well as greater need of resources and special education compared with fullterm controls. BPD survivors at 10 to 12 years of age continue to manifest sequelae related to their early pulmonary disease.

Children's Health Care, 2009

A comprehensive model is presented that (a) highlights factors that have been implicated in the d... more A comprehensive model is presented that (a) highlights factors that have been implicated in the development and maintenance of feeding problems in both normal and clinical populations; and (b) provides a framework for the prevention, management, and treatment of feeding problems across the range of physically healthy children to children with acute and chronic illnesses. Relevant literatures and feeding models

Child: Care, Health and Development, 2011

Objective-This qualitative study explored the experiences of Latino siblings of children with dev... more Objective-This qualitative study explored the experiences of Latino siblings of children with developmental disabilities. Methods-Parents and typically developing siblings from 15 Latino families with a child with a developmental disability participated in separate interviews. Results-Using Consensual Qualitative Research methodology (Hill, Thompson, & Williams, 1997), domains reflecting siblings' relationships, emotional experiences, and communication about the disability were identified. The child's need for caregiving was a prominent topic in the sibling and parent narratives. Parents reported concerns about siblings' experience of differential treatment whereas siblings reported concerns about restricted social activities because of their brother/sister. Conclusions-Including multiple informants revealed commonalities and differences in parents' and siblings' perspectives on the impact of a child's disability. The importance of considering sibling adaptation in sociocultural context is discussed.

Alimentary Pharmacology & Therapeutics, 2019

Background: Medication non-adherence in paediatric ulcerative colitis (UC) has been associated wi... more Background: Medication non-adherence in paediatric ulcerative colitis (UC) has been associated with negative health outcomes including flares in disease activity. However, no studies to date have examined longitudinal adherence to maintenance medication in a prospective controlled trial. Aims: To determine whether objectively measured adherence to standardised mesalazine (mesalamine) therapy over time was related to remission at 52 weeks and the need for treatment escalation in newly diagnosed paediatric patients with UC. Methods: PROTECT (NCT01536535) was a prospective, inception cohort, multi-site study of paediatric patients aged 4-17 years with newly diagnosed UC followed for 52 weeks. Patients received standardised mesalazine, with pre-established criteria for escalation to thiopurines or anti-TNFα inhibitors. Patients used pill bottles with electronic caps to monitor mesalazine adherence. We tested whether longitudinal adherence to mesalazine predicted steroid-free remission at week 52 (i.e. quiescent disease on mesalazine alone with no corticosteroids ≥4 weeks prior) and need for treatment escalation (i.e. introduction of immunomodulators, calcineurin-inhibitors or anti-TNFα inhibitors). Results: Among 268 patients, average mesalazine adherence trajectories did not predict week 52 steroid-free remission. Declining adherence over time strongly predicted treatment escalation (β = −.037, P = .001). By month 6, adherence rate ≤85.7% was associated with treatment escalation.

No wonder you activities are, reading will be always needed. It is not only to fulfil the duties ... more No wonder you activities are, reading will be always needed. It is not only to fulfil the duties that you need to finish in deadline time. Reading will encourage your mind and thoughts. Of course, reading will greatly develop your experiences about everything. Reading brothers sisters and special needs information and activities for helping young siblings of children with chronic illnesses and developmental disabilities is also a way as one of the collective books that gives many advantages. The advantages are not only for you, but for the other peoples with those meaningful benefits.

Education and Treatment of Children, 1985

Journal of Autism and Developmental Disorders, 1985