Journal of Developmental & Behavioral Pediatrics, 2015
Nola is a complicated 22-month (19-mo corrected) former 34-week premature girl who presents to yo... more Nola is a complicated 22-month (19-mo corrected) former 34-week premature girl who presents to your practice in the company of her foster caretaker, a maternal aunt. The history you have comes mostly through the lens of her aunt's recall of a variety of clinical encounters and emergency room visits that have taken place at 2 of the region's tertiary care centers, including a prolonged recent hospitalization for failure to thrive. Regrettably, you have no discharge summary on hand from the outside institution.Fortunately, Nola's aunt has come prepared. From her notes, you learn that Nola has a history of feeding difficulties and "global developmental delay." The details of Nola's prenatal and neonatal intensive care unit admission are scant. Nola has been described as having "unusual facial features, such as smallish eyes, low tone, some vision problems." A physical examination demonstrates significant delays in all streams of development. Nola's aunt recalls that she may need a gastrostomy tube pending her weight gain in the next few months.At present, Nola's aunt/foster caretaker is caring for her at home and expresses her concern about 4 major areas: coordinating multiple appointments at various sites, keeping track of involved medical information, getting all of the "paperwork" done to get needed upgrades for a feeding chair, and buying expensive special formula with her own money. Nola's aunt is intelligent and motivated, but she has limited help at home and is overwhelmed with all the aspects of the care. The aunt acknowledges the importance of multiple appointments-feeding support, developmental evaluations, vision, and neurologic assessments. When you inquire who Nola's aunt identifies as her niece's primary care provider, she reports that she has seen different doctors due to the vagaries of her schedule.You conclude that Nola's situation is not likely to improve without a dramatic intervention. As you try to pull together a plan, you wonder what the most effective approach is for the busy clinician. Who should take the lead on a child's care? Can a primary care pediatric clinician partner with other specialists and programs and use other members of a care team effectively? And, does care coordination provide better more cost-effective care?
OBJECTIVE: To describe what and how pediatric residents in Massachusetts are taught about childre... more OBJECTIVE: To describe what and how pediatric residents in Massachusetts are taught about children and youth with special health care needs (CYSHCN) and the medical home. PARTICIPANTS AND METHODS: Faculty members and residents at Massachusetts' 5 pediatric residency programs were interviewed to identify current curricula and teaching methods related to care of CYSHCN. In addition, residents were surveyed to quantify these concepts. RESULTS: Thirty-one faculty members and 25 residents were interviewed. Most exposure to CYSHCN was reported to occur in inpatient settings. However, most formal teaching about CYSHCN was described as occurring in the ambulatory setting. Promising educational strategies included home and community visits, inclusion of CYSHCN in resident continuity panels, and simulation and role-playing. Overall, the programs had little training emphasis on the lives and needs of CYSHCN and their families outside the hospital setting. Twenty (80%) of the residents inte...
Children with special healthcare needs benefit when there is close coordination of care for their... more Children with special healthcare needs benefit when there is close coordination of care for their chronic disease between specialists and primary care providers. The importance of coordination between primary and specialty care has become better recognized with the increased attention to a comprehensive 'medical home' model of care. Care coordination requires close communication between primary care providers and specialty care centers. Primary care providers are in an ideal position to assist patients and families by providing care coordination, not only within the healthcare system, but also between the healthcare system and community services and schools. Coordination is best undertaken at the physician practice level, utilizing a team approach. Nonphysician staff provide added value in coordination of care for patients and families. Opportunities for reimbursement for this care are being developed. Coordination of care for the many children with special healthcare needs can be realized using existing resources. Using cystic fibrosis as an example, implementation methods within pediatric primary care practices are presented and discussed.
Background: Springfield, MA is an urban center with 27.6% of the population below the poverty lev... more Background: Springfield, MA is an urban center with 27.6% of the population below the poverty level. The Springfield Public Schools (SPS) nursing department reports a student asthma prevalence of 20%, which is almost double the statewide prevalence in Massachusetts. Children in Springfield also experience marked racial/ethnic asthma disparities, with hospitalization rates among Hispanic children almost 4 times higher, and Black children almost double the asthma hospitalization rates of White children. The Pioneer Valley Asthma Coalition's work to improve asthma in the Springfield Public Schools has become a regional model to address high prevalence, poor symptom management and disparities in care. Purpose: This work is a case study that describes health education, promotion and systems change work to reduce asthma disparities through asthma management, asthma education and improved indoor air quality in an urban school district. Findings: Key elements of these successes include:...
Research has demonstrated that CHW in-home asthma interventions can improve health outcomes and i... more Research has demonstrated that CHW in-home asthma interventions can improve health outcomes and increase quality of life. However most children with asthma, especially those from low income communities, don't receive these interventions and continue to experience poorly controlled asthma. This presentation explores how Seattle and Massachusetts are translating research to wide-spread implementation, including efforts to sustain the intervention through coverage and workforce development. Seattle King County Health Department presents its research on the intervention's effectiveness when focused on high risk children. The presenter will review the subsequent research confirming that this model can improve health outcomes and reduce costs by approximately 20%. Seattle King County will describe their efforts to sustain this intervention by partnering with publicly-funded insurers. Boston Medical Center, Baystate Medical Center, and Boston Public Health Commission present their ...
Background: The Inner City Asthma Intervention (ICAI) was a national multi-center implementation ... more Background: The Inner City Asthma Intervention (ICAI) was a national multi-center implementation of an evidence-based intervention to reduce asthma morbidity. Objective: This study describes mitigating behaviors and reported outcomes in families with asthma who completed the ...
We conducted a multicomponent, low-cost, home intervention for children with uncontrolled asthma,... more We conducted a multicomponent, low-cost, home intervention for children with uncontrolled asthma, the Reducing Ethnic/Racial Asthma Disparities in Youth (READY) study, to evaluate its effect on health outcomes and its return on investment. From 2009 through 2014 the study enrolled 289 children aged 2 to 13 years with uncontrolled asthma and their adult caregivers in Boston and Springfield, Massachusetts. Community health workers (CHWs) led in-home asthma management and environmental trigger remediation education over 5 visits spanning 6 months. Asthma health outcomes and indoor environment data were collected via survey, and health use costs were accessed through Massachusetts Medicaid (MassHealth). Results showed significant improvements in asthma control, health care use, and environmental trigger reduction and a positive return on investment (1.34) for participants who had 2 or more emergency department visits 1 year prior to the first home visit. The CHW asthma home visiting intervention improved trigger management, clinical outcomes, and Medicaid cost savings, demonstrating that asthma home visits improve health quality and reduce costs.
Child poverty in the United States is widespread and has serious negative effects on the health a... more Child poverty in the United States is widespread and has serious negative effects on the health and well-being of children throughout their life course. Child health providers are considering ways to redesign their practices in order to mitigate the negative effects of poverty on children and support the efforts of families to lift themselves out of poverty. To do so, practices need to adopt effective methods to identify poverty-related social determinants of health and provide effective interventions to address them. Identification of needs can be accomplished with a variety of established screening tools. Interventions may include resource directories, best maintained in collaboration with local/regional public health, community, and/or professional organizations; programs embedded in the practice (eg, Reach Out and Read, Healthy Steps for Young Children,
The purpose of this review is to update providers on how best to address asthma in adolescents. A... more The purpose of this review is to update providers on how best to address asthma in adolescents. Asthma is a common chronic disease, with increased prevalence in minority populations, especially those living in poverty. Published treatment guidelines form the basis of modern asthma treatment, based on disease severity, frequency of symptoms, and lung function measured by spirometry. Written asthma action plans are recommended for patients with persistent asthma. Treating teens with asthma can be challenging, as they may deny disease, underreport symptoms, abandon medication regimens, and engage in risk-taking behaviors. Psychiatric comorbidities such as depression, anxiety, and even posttraumatic stress disorder can have profound effects on the adolescent with asthma, making the treatment much more challenging. Pediatricians should utilize a developmental approach, incorporating guideline-based therapies when developing treatment plans for teens with asthma. Resources such as school-based health centers, community health workers, mental health professionals, and possibly asthma specialists are all valuable aids to the physician in the medical home in providing care coordination for their teens with asthma.
Journal of developmental and behavioral pediatrics : JDBP
Nola is a complicated 22-month (19-mo corrected) former 34-week premature girl who presents to yo... more Nola is a complicated 22-month (19-mo corrected) former 34-week premature girl who presents to your practice in the company of her foster caretaker, a maternal aunt. The history you have comes mostly through the lens of her aunt's recall of a variety of clinical encounters and emergency room visits that have taken place at 2 of the region's tertiary care centers, including a prolonged recent hospitalization for failure to thrive. Regrettably, you have no discharge summary on hand from the outside institution.Fortunately, Nola's aunt has come prepared. From her notes, you learn that Nola has a history of feeding difficulties and "global developmental delay." The details of Nola's prenatal and neonatal intensive care unit admission are scant. Nola has been described as having "unusual facial features, such as smallish eyes, low tone, some vision problems." A physical examination demonstrates significant delays in all streams of development. Nola'...
The Inner-City Asthma Intervention was a national, multicenter implementation of an evidence-base... more The Inner-City Asthma Intervention was a national, multicenter implementation of an evidence-based intervention to reduce asthma morbidity in inner-city children that was funded by the Centers for Disease Control and Prevention. Funding was initially planned for 4 years beginning in April 2001, but because of budgetary changes funding ceased in September 2004, 6 months before the original plan. Some sites were able to sustain their asthma program when the funding ended and others were not. To compare characteristics of sites that were able to sustain their asthma program after the original funding ended with those that were not. Data were collected from the project manager at each site in an electronic survey and through telephone interview in November 2003 and August 2005. Using contingency tables, we examined the bivariate relationship between each proposed factor and our outcome measure, secured funding. Of the 18 sites that completed the survey, 50% reported continued funding. All sustainable sites received funding from multiple sources, including either the hospital or the community. One site received federal funding and one site received state funding. Of the sites that presented data to multiple funders, 6 of 9 were sustained (P = .05). Sustainable programs were more likely to be funded locally. Programs that used an evaluative process, including patient outcomes data, to demonstrate the importance of the program to their institution and community were more likely to obtain continued funding compared with those that did not.
The Inner-City Asthma Intervention was a national, multicenter implementation of an evidence-base... more The Inner-City Asthma Intervention was a national, multicenter implementation of an evidence-based intervention to reduce asthma morbidity in inner-city children that was funded by the Centers for Disease Control and Prevention. Funding was initially planned for 4 years beginning in April 2001, but because of budgetary changes funding ceased in September 2004, 6 months before the original plan. Some sites were able to sustain their asthma program when the funding ended and others were not. To compare characteristics of sites that were able to sustain their asthma program after the original funding ended with those that were not. Data were collected from the project manager at each site in an electronic survey and through telephone interview in November 2003 and August 2005. Using contingency tables, we examined the bivariate relationship between each proposed factor and our outcome measure, secured funding. Of the 18 sites that completed the survey, 50% reported continued funding. All sustainable sites received funding from multiple sources, including either the hospital or the community. One site received federal funding and one site received state funding. Of the sites that presented data to multiple funders, 6 of 9 were sustained (P = .05). Sustainable programs were more likely to be funded locally. Programs that used an evaluative process, including patient outcomes data, to demonstrate the importance of the program to their institution and community were more likely to obtain continued funding compared with those that did not.
The purpose of this study was to conduct the first known large scale survey of parents of childre... more The purpose of this study was to conduct the first known large scale survey of parents of children with special health care needs (CSHCN) to determine their child's: oral health status; access to dental care; perceived barriers (environmental/system and nonenvironmental/family); and oral health quality of life, accounting for each child's medical diagnosis and severity of diagnosis. A 72-item survey was sent to 3760 families of CSHCN throughout urban and rural Massachusetts. The study yielded 1,128 completed surveys. More than 90% of the children had seen a dentist within the past year; 66% saw a pediatric dentist, and 21% needed intense behavioral interventions. Although most families had high education levels, private dental insurance, and above average incomes, 20% of CSHCN had an unmet dental need. Children with craniofacial anomalies had twice as many unmet needs and children with cystic fibrosis had fewer unmet needs. Children with cerebral palsy, autism, developmental...
The purpose of this study was to conduct the first known large scale survey of parents of childre... more The purpose of this study was to conduct the first known large scale survey of parents of children with special health care needs (CSHCN) to determine their child's: oral health status; access to dental care; perceived barriers (environmental/system and nonenvironmental/family); and oral health quality of life, accounting for each child's medical diagnosis and severity of diagnosis. A 72-item survey was sent to 3760 families of CSHCN throughout urban and rural Massachusetts. The study yielded 1,128 completed surveys. More than 90% of the children had seen a dentist within the past year; 66% saw a pediatric dentist, and 21% needed intense behavioral interventions. Although most families had high education levels, private dental insurance, and above average incomes, 20% of CSHCN had an unmet dental need. Children with craniofacial anomalies had twice as many unmet needs and children with cystic fibrosis had fewer unmet needs. Children with cerebral palsy, autism, developmental...
Journal of Developmental & Behavioral Pediatrics, 2015
Nola is a complicated 22-month (19-mo corrected) former 34-week premature girl who presents to yo... more Nola is a complicated 22-month (19-mo corrected) former 34-week premature girl who presents to your practice in the company of her foster caretaker, a maternal aunt. The history you have comes mostly through the lens of her aunt's recall of a variety of clinical encounters and emergency room visits that have taken place at 2 of the region's tertiary care centers, including a prolonged recent hospitalization for failure to thrive. Regrettably, you have no discharge summary on hand from the outside institution.Fortunately, Nola's aunt has come prepared. From her notes, you learn that Nola has a history of feeding difficulties and "global developmental delay." The details of Nola's prenatal and neonatal intensive care unit admission are scant. Nola has been described as having "unusual facial features, such as smallish eyes, low tone, some vision problems." A physical examination demonstrates significant delays in all streams of development. Nola's aunt recalls that she may need a gastrostomy tube pending her weight gain in the next few months.At present, Nola's aunt/foster caretaker is caring for her at home and expresses her concern about 4 major areas: coordinating multiple appointments at various sites, keeping track of involved medical information, getting all of the "paperwork" done to get needed upgrades for a feeding chair, and buying expensive special formula with her own money. Nola's aunt is intelligent and motivated, but she has limited help at home and is overwhelmed with all the aspects of the care. The aunt acknowledges the importance of multiple appointments-feeding support, developmental evaluations, vision, and neurologic assessments. When you inquire who Nola's aunt identifies as her niece's primary care provider, she reports that she has seen different doctors due to the vagaries of her schedule.You conclude that Nola's situation is not likely to improve without a dramatic intervention. As you try to pull together a plan, you wonder what the most effective approach is for the busy clinician. Who should take the lead on a child's care? Can a primary care pediatric clinician partner with other specialists and programs and use other members of a care team effectively? And, does care coordination provide better more cost-effective care?
OBJECTIVE: To describe what and how pediatric residents in Massachusetts are taught about childre... more OBJECTIVE: To describe what and how pediatric residents in Massachusetts are taught about children and youth with special health care needs (CYSHCN) and the medical home. PARTICIPANTS AND METHODS: Faculty members and residents at Massachusetts' 5 pediatric residency programs were interviewed to identify current curricula and teaching methods related to care of CYSHCN. In addition, residents were surveyed to quantify these concepts. RESULTS: Thirty-one faculty members and 25 residents were interviewed. Most exposure to CYSHCN was reported to occur in inpatient settings. However, most formal teaching about CYSHCN was described as occurring in the ambulatory setting. Promising educational strategies included home and community visits, inclusion of CYSHCN in resident continuity panels, and simulation and role-playing. Overall, the programs had little training emphasis on the lives and needs of CYSHCN and their families outside the hospital setting. Twenty (80%) of the residents inte...
Children with special healthcare needs benefit when there is close coordination of care for their... more Children with special healthcare needs benefit when there is close coordination of care for their chronic disease between specialists and primary care providers. The importance of coordination between primary and specialty care has become better recognized with the increased attention to a comprehensive 'medical home' model of care. Care coordination requires close communication between primary care providers and specialty care centers. Primary care providers are in an ideal position to assist patients and families by providing care coordination, not only within the healthcare system, but also between the healthcare system and community services and schools. Coordination is best undertaken at the physician practice level, utilizing a team approach. Nonphysician staff provide added value in coordination of care for patients and families. Opportunities for reimbursement for this care are being developed. Coordination of care for the many children with special healthcare needs can be realized using existing resources. Using cystic fibrosis as an example, implementation methods within pediatric primary care practices are presented and discussed.
Background: Springfield, MA is an urban center with 27.6% of the population below the poverty lev... more Background: Springfield, MA is an urban center with 27.6% of the population below the poverty level. The Springfield Public Schools (SPS) nursing department reports a student asthma prevalence of 20%, which is almost double the statewide prevalence in Massachusetts. Children in Springfield also experience marked racial/ethnic asthma disparities, with hospitalization rates among Hispanic children almost 4 times higher, and Black children almost double the asthma hospitalization rates of White children. The Pioneer Valley Asthma Coalition's work to improve asthma in the Springfield Public Schools has become a regional model to address high prevalence, poor symptom management and disparities in care. Purpose: This work is a case study that describes health education, promotion and systems change work to reduce asthma disparities through asthma management, asthma education and improved indoor air quality in an urban school district. Findings: Key elements of these successes include:...
Research has demonstrated that CHW in-home asthma interventions can improve health outcomes and i... more Research has demonstrated that CHW in-home asthma interventions can improve health outcomes and increase quality of life. However most children with asthma, especially those from low income communities, don't receive these interventions and continue to experience poorly controlled asthma. This presentation explores how Seattle and Massachusetts are translating research to wide-spread implementation, including efforts to sustain the intervention through coverage and workforce development. Seattle King County Health Department presents its research on the intervention's effectiveness when focused on high risk children. The presenter will review the subsequent research confirming that this model can improve health outcomes and reduce costs by approximately 20%. Seattle King County will describe their efforts to sustain this intervention by partnering with publicly-funded insurers. Boston Medical Center, Baystate Medical Center, and Boston Public Health Commission present their ...
Background: The Inner City Asthma Intervention (ICAI) was a national multi-center implementation ... more Background: The Inner City Asthma Intervention (ICAI) was a national multi-center implementation of an evidence-based intervention to reduce asthma morbidity. Objective: This study describes mitigating behaviors and reported outcomes in families with asthma who completed the ...
We conducted a multicomponent, low-cost, home intervention for children with uncontrolled asthma,... more We conducted a multicomponent, low-cost, home intervention for children with uncontrolled asthma, the Reducing Ethnic/Racial Asthma Disparities in Youth (READY) study, to evaluate its effect on health outcomes and its return on investment. From 2009 through 2014 the study enrolled 289 children aged 2 to 13 years with uncontrolled asthma and their adult caregivers in Boston and Springfield, Massachusetts. Community health workers (CHWs) led in-home asthma management and environmental trigger remediation education over 5 visits spanning 6 months. Asthma health outcomes and indoor environment data were collected via survey, and health use costs were accessed through Massachusetts Medicaid (MassHealth). Results showed significant improvements in asthma control, health care use, and environmental trigger reduction and a positive return on investment (1.34) for participants who had 2 or more emergency department visits 1 year prior to the first home visit. The CHW asthma home visiting intervention improved trigger management, clinical outcomes, and Medicaid cost savings, demonstrating that asthma home visits improve health quality and reduce costs.
Child poverty in the United States is widespread and has serious negative effects on the health a... more Child poverty in the United States is widespread and has serious negative effects on the health and well-being of children throughout their life course. Child health providers are considering ways to redesign their practices in order to mitigate the negative effects of poverty on children and support the efforts of families to lift themselves out of poverty. To do so, practices need to adopt effective methods to identify poverty-related social determinants of health and provide effective interventions to address them. Identification of needs can be accomplished with a variety of established screening tools. Interventions may include resource directories, best maintained in collaboration with local/regional public health, community, and/or professional organizations; programs embedded in the practice (eg, Reach Out and Read, Healthy Steps for Young Children,
The purpose of this review is to update providers on how best to address asthma in adolescents. A... more The purpose of this review is to update providers on how best to address asthma in adolescents. Asthma is a common chronic disease, with increased prevalence in minority populations, especially those living in poverty. Published treatment guidelines form the basis of modern asthma treatment, based on disease severity, frequency of symptoms, and lung function measured by spirometry. Written asthma action plans are recommended for patients with persistent asthma. Treating teens with asthma can be challenging, as they may deny disease, underreport symptoms, abandon medication regimens, and engage in risk-taking behaviors. Psychiatric comorbidities such as depression, anxiety, and even posttraumatic stress disorder can have profound effects on the adolescent with asthma, making the treatment much more challenging. Pediatricians should utilize a developmental approach, incorporating guideline-based therapies when developing treatment plans for teens with asthma. Resources such as school-based health centers, community health workers, mental health professionals, and possibly asthma specialists are all valuable aids to the physician in the medical home in providing care coordination for their teens with asthma.
Journal of developmental and behavioral pediatrics : JDBP
Nola is a complicated 22-month (19-mo corrected) former 34-week premature girl who presents to yo... more Nola is a complicated 22-month (19-mo corrected) former 34-week premature girl who presents to your practice in the company of her foster caretaker, a maternal aunt. The history you have comes mostly through the lens of her aunt's recall of a variety of clinical encounters and emergency room visits that have taken place at 2 of the region's tertiary care centers, including a prolonged recent hospitalization for failure to thrive. Regrettably, you have no discharge summary on hand from the outside institution.Fortunately, Nola's aunt has come prepared. From her notes, you learn that Nola has a history of feeding difficulties and "global developmental delay." The details of Nola's prenatal and neonatal intensive care unit admission are scant. Nola has been described as having "unusual facial features, such as smallish eyes, low tone, some vision problems." A physical examination demonstrates significant delays in all streams of development. Nola'...
The Inner-City Asthma Intervention was a national, multicenter implementation of an evidence-base... more The Inner-City Asthma Intervention was a national, multicenter implementation of an evidence-based intervention to reduce asthma morbidity in inner-city children that was funded by the Centers for Disease Control and Prevention. Funding was initially planned for 4 years beginning in April 2001, but because of budgetary changes funding ceased in September 2004, 6 months before the original plan. Some sites were able to sustain their asthma program when the funding ended and others were not. To compare characteristics of sites that were able to sustain their asthma program after the original funding ended with those that were not. Data were collected from the project manager at each site in an electronic survey and through telephone interview in November 2003 and August 2005. Using contingency tables, we examined the bivariate relationship between each proposed factor and our outcome measure, secured funding. Of the 18 sites that completed the survey, 50% reported continued funding. All sustainable sites received funding from multiple sources, including either the hospital or the community. One site received federal funding and one site received state funding. Of the sites that presented data to multiple funders, 6 of 9 were sustained (P = .05). Sustainable programs were more likely to be funded locally. Programs that used an evaluative process, including patient outcomes data, to demonstrate the importance of the program to their institution and community were more likely to obtain continued funding compared with those that did not.
The Inner-City Asthma Intervention was a national, multicenter implementation of an evidence-base... more The Inner-City Asthma Intervention was a national, multicenter implementation of an evidence-based intervention to reduce asthma morbidity in inner-city children that was funded by the Centers for Disease Control and Prevention. Funding was initially planned for 4 years beginning in April 2001, but because of budgetary changes funding ceased in September 2004, 6 months before the original plan. Some sites were able to sustain their asthma program when the funding ended and others were not. To compare characteristics of sites that were able to sustain their asthma program after the original funding ended with those that were not. Data were collected from the project manager at each site in an electronic survey and through telephone interview in November 2003 and August 2005. Using contingency tables, we examined the bivariate relationship between each proposed factor and our outcome measure, secured funding. Of the 18 sites that completed the survey, 50% reported continued funding. All sustainable sites received funding from multiple sources, including either the hospital or the community. One site received federal funding and one site received state funding. Of the sites that presented data to multiple funders, 6 of 9 were sustained (P = .05). Sustainable programs were more likely to be funded locally. Programs that used an evaluative process, including patient outcomes data, to demonstrate the importance of the program to their institution and community were more likely to obtain continued funding compared with those that did not.
The purpose of this study was to conduct the first known large scale survey of parents of childre... more The purpose of this study was to conduct the first known large scale survey of parents of children with special health care needs (CSHCN) to determine their child's: oral health status; access to dental care; perceived barriers (environmental/system and nonenvironmental/family); and oral health quality of life, accounting for each child's medical diagnosis and severity of diagnosis. A 72-item survey was sent to 3760 families of CSHCN throughout urban and rural Massachusetts. The study yielded 1,128 completed surveys. More than 90% of the children had seen a dentist within the past year; 66% saw a pediatric dentist, and 21% needed intense behavioral interventions. Although most families had high education levels, private dental insurance, and above average incomes, 20% of CSHCN had an unmet dental need. Children with craniofacial anomalies had twice as many unmet needs and children with cystic fibrosis had fewer unmet needs. Children with cerebral palsy, autism, developmental...
The purpose of this study was to conduct the first known large scale survey of parents of childre... more The purpose of this study was to conduct the first known large scale survey of parents of children with special health care needs (CSHCN) to determine their child's: oral health status; access to dental care; perceived barriers (environmental/system and nonenvironmental/family); and oral health quality of life, accounting for each child's medical diagnosis and severity of diagnosis. A 72-item survey was sent to 3760 families of CSHCN throughout urban and rural Massachusetts. The study yielded 1,128 completed surveys. More than 90% of the children had seen a dentist within the past year; 66% saw a pediatric dentist, and 21% needed intense behavioral interventions. Although most families had high education levels, private dental insurance, and above average incomes, 20% of CSHCN had an unmet dental need. Children with craniofacial anomalies had twice as many unmet needs and children with cystic fibrosis had fewer unmet needs. Children with cerebral palsy, autism, developmental...
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