Receipt of Health Care Transition Counseling in the National Survey of Adult Transition and Health

Sawicki, Gregory S.; Whitworth, Ruth E.; Gunn, Laura H; Butterfield, Ryan; Lukens-Bull, Katryne; Wood, David L.

doi:10.1542/peds.2010-3017

Cited by 48 publications

(38 citation statements)

References 18 publications

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“…Similar indicators have been shown to predict receipt of HCT services in YSHCN and in the general young adult population. 17,18,26 Although target population and severity measurements varied considerably, these studies reported similar findings; ie, as the complexity of condition increases, the likelihood of receiving HCT services decreases. The comorbid condition variables used within the present study may be a more accurate measure of complexity because it is not as subjective as parental report of functioning and activity limits.…”

Section: Discussionmentioning

confidence: 70%

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Disparities in Transition Planning for Youth With Autism Spectrum Disorder

Cheak‐Zamora¹,

Yang²,

Farmer

et al. 2013

Pediatrics

110

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WHAT'S KNOWN ON THIS SUBJECT: Health care transition services assist youth with special health care needs (YSHCN) in transitioning to adult care without gaps in services or health insurance coverage. Less than half of YSHCN receive anticipatory assistance in this transition; receipt of these services for youth with autism spectrum disorder is unknown. WHAT THIS STUDY ADDS:Youth with autism spectrum disorder receive transition services half as often as youth with special health care needs. Quality of health care is associated with increased receipt of health care transition services. Presence of comorbid conditions decreased receipt of transition services. abstract OBJECTIVE: Little is known about accessibility to health care transition (HCT) services for youth with autism spectrum disorder (ASD). This study expands our understanding by examining the receipt of HCT services in youth with ASD compared with youth with other special health care needs (OSHCN). METHODS:We used the 2005-2006 National Survey of Children with Special Health Care Needs to examine receipt of HCT services for youth (aged 12-17 years) with ASD and youth with OSHCN. Logistic regression analyses explored whether individual, family, or health system factors were associated with receipt of HCT services for youth with ASD. RESULTS:Whereas half of youth with OSHCN received HCT services, less than a quarter of youth with ASD did. Only 14% of youth with ASD had a discussion with their pediatrician about transitioning to an adult provider, less than a quarter had a discussion about health insurance retention, and just under half discussed adult health care needs or were encouraged to take on appropriate responsibility. Logistic regression analyses indicated that having a developmental disability or multiple health conditions in addition to ASD and quality of health care were strong predictors of HCT, whereas demographic and family variables accounted for little variance. CONCLUSIONS:Youth with ASD experience disparities in access to HCT services. Youth with comorbid conditions are at greatest risk for poor access to HCT services and increased quality of care has a positive effect. Research is needed to understand barriers to care and develop policy and practice guidelines tailored for youth with ASD. Pediatrics 2013;131:447-454

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Section: Discussionmentioning

confidence: 70%

“…17,18,21,26 Individual demographic explanatory variables included age, gender, and race/ethnicity (Table 1). Youth' s mental and physical health was examined by using several variables related to severity of health conditions and presence of comorbid conditions.…”

Section: Explanatory Variablesmentioning

confidence: 99%

Disparities in Transition Planning for Youth With Autism Spectrum Disorder

Cheak‐Zamora¹,

Yang²,

Farmer

et al. 2013

Pediatrics

110

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“…[353][354][355] Early development of staged and timely transition processes and programs geared toward education, and modifiable for individualized patient diagnosis and complicit concerns, is greatly needed. [356][357][358][359][360] It is recommended that education through accurate dissemination of information begin at an early stage in the patient healthcare process and directly involve caregivers, providers, support staff, and the patient. 351,[361][362][363] Patients with NMDs are likely to benefit from a coordinator-directed, multidisciplinary team approach, which can provide important support in negotiating communication gaps between providers and enable a systematic clinical transition and education process on health, adult care providers, facilities, and financial and medical resources.…”

Section: Transition Of Carementioning

confidence: 99%

“…351,[361][362][363] Patients with NMDs are likely to benefit from a coordinator-directed, multidisciplinary team approach, which can provide important support in negotiating communication gaps between providers and enable a systematic clinical transition and education process on health, adult care providers, facilities, and financial and medical resources. 351,353,358,364,365 …”

Section: Transition Of Carementioning

confidence: 99%

Management of Cardiac Involvement Associated With Neuromuscular Diseases: A Scientific Statement From the American Heart Association

Feingold¹,

Mahle²,

Auerbach³

et al. 2017

Circulation

223

195

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For many neuromuscular diseases (NMDs), cardiac disease represents a major cause of morbidity and mortality. The management of cardiac disease in NMDs is made challenging by the broad clinical heterogeneity that exists among many NMDs and by limited knowledge about disease-specific cardiovascular pathogenesis and course-modifying interventions. The overlay of compromise in peripheral muscle function and other organ systems, such as the lungs, also makes the simple application of endorsed adult or pediatric heart failure guidelines to the NMD population problematic. In this statement, we provide background on several NMDs in which there is cardiac involvement, highlighting unique features of NMD-associated myocardial disease that require clinicians to tailor their approach to prevention and treatment of heart failure. Undoubtedly, further investigations are required to best inform future guidelines on NMD-specific cardiovascular health risks, treatments, and outcomes. N euromuscular diseases (NMDs) encompass a broad spectrum of diagnoses with overlapping but distinct phenotypes. Common to many NMDs is cardiac involvement. Although the past 3 decades have seen marked advances in our understanding of many NMDs, significant gaps in knowledge remain on how best to approach cardiac care in these patients. For example, survival in Duchenne muscular dystrophy (DMD) has been extended through the use of glucocorticoid use and respiratory support, yet cardiac complications remain a significant cause of morbidity and mortality.1-3 To achieve further gains in care, we will need to improve our understanding of the pathophysiologies driving cardiac involvement in NMDs and advance treatments aimed at preventing the progression of heart failure (HF) and sudden death in NMDs. The recently published findings of an expert working group on cardiac involvement in DMD, which outlined key gaps in knowledge and made specific recommendations aimed at improving diagnosis and management, are a step toward this goal. 4 In this statement, we include a comprehensive overview of the major categories of NMDs with cardiac involvement. For each, a brief background of the gene defect(s), common clinical manifestations (particularly cardiac findings), and current therapies is summarized. Gaps in knowledge are highlighted, and where possible, clinical treatment suggestions are made by the expert writing group appointed by the American Heart Association to review the available literature. Selection of the writing group was performed in accordance with the American Heart Association's conflict-of-interest management policy. Participants volunteered to write sections relevant to their expertise and experience. CLINICAL STATEMENTS AND GUIDELINESconducted a general search of the literature, restricted to human subjects research published between 1980 and 2016. Drafts of each section were written and sent to the chair of the writing group for incorporation into a single document, which was then edited. The edited document was discussed electron...

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“…22 Furthermore, among young adults aged 19 to 23 with SHCN who had transitioned to adult care, although 50% reported having received advice from their pediatric providers regarding how their needs would change with age, how to obtain health insurance, or how to participate in a transition plan in school, only 24% received counseling in all 3 areas. 23 In 2011 the American Academy of Pediatrics published a clinical report that promotes a developmental model for HCT preparation within the context of the medical home. 24 The report recommends that providers regularly and objectively assess patients' disease self-management and health care utilization skills.…”

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confidence: 99%