Supporting the Health Care Transition From Adolescence to Adulthood in the Medical Home.

Risk and vulnerability encompass many dimensions of the transition from adolescence to adulthood. Transition from pediatric, parent-supervised health care to more independent, patient-centered adult health care is no exception. The tenets and algorithm of the original 2011 clinical report, "Supporting the Health Care Transition from Adolescence to Adulthood in the Medical Home," are unchanged. This updated clinical report provides more practice-based quality improvement guidance on key elements of transition planning, transfer, and integration into adult care for all youth and young adults. It also includes new and updated sections on definition and guiding principles, the status of health care transition preparation among youth, barriers, outcome evidence, recommended health care transition processes and implementation strategies using quality improvement methods, special populations, education and training in pediatric onset conditions, and payment options. The clinical report also includes new recommendations pertaining to infrastructure, education and training, payment, and research.

Patients receiving chiropractic care in a neurorehabilitation hospital: a descriptive study.

OBJECTIVES: Individuals rehabilitating from complex neurological injury require a multidisciplinary approach, which typically does not include chiropractic care. This study describes inpatients receiving multidisciplinary rehabilitation including chiropractic care for brain injury, spinal cord injury (SCI), stroke, and other complex neurological conditions. DESIGN: Chiropractic services were integrated into Crotched Mountain Specialty Hospital (CMSH) through this project. Patient characteristics and chiropractic care data were collected to describe those receiving care and the interventions during the first 15 months when chiropractic services were available. SETTING: CMSH, a 62-bed subacute multidisciplinary rehabilitation, skilled nursing facility located in Greenfield, New Hampshire, USA. RESULTS: Patient mean (SD) age (n=27) was 42.8 (13) years, ranging from 20 to 64 years. Males (n=18, 67%) and those of white race/ethnicity (n=23, 85%) comprised the majority. Brain injury (n=20) was the most common admitting condition caused by trauma (n=9), hemorrhage (n=7), infarction (n=2), and general anoxia (n=2). Three patients were admitted for cervical SCI, 1 for ankylosing spondylitis, 1 for traumatic polyarthropathy, and 2 for respiratory failure with encephalopathy. Other common comorbid diagnoses potentially complicating the treatment and recovery process included myospasm (n=13), depression (n=11), anxiety (n=10), dysphagia (n=8), substance abuse (n=8), and candidiasis (n=7). Chiropractic procedures employed, by visit (n=641), included manual myofascial therapies (93%), mechanical percussion (83%), manual muscle stretching (75%), and thrust manipulation (65%) to address patients with spinal-related pain (n=15, 54%), joint or regional stiffness (n= 14, 50%), and extremity pain (n=13, 46%). Care often required adapting to participant limitations or conditions. Such adaptations not commonly encountered in outpatient settings where chiropractic care is usually delivered included the need for lift assistance, wheelchair dependence, contractures, impaired speech, quadriplegia/paraplegia, and the presence of feeding tubes and urinary catheters. CONCLUSION: Patients suffered significant functional limitations and comorbidity resulting in modifications to the typical delivery of chiropractic care. Chiropractic services focused on relieving musculoskeletal pain and stiffness.

Care coordination over time in medical homes for children with special health care needs.

OBJECTIVES: To explore how care coordination changes conceptually and practically in primary care practices when implementing the medical home and to identify reasons for different types of changes. METHODS: Six years after a 2003-2004 national learning collaborative to implement the medical home model for children with special health care needs, we examined care coordination in 12 pediatric practices with the highest postintervention Medical Home Index scores, indicating high level of adoption of the model. Data included interviews of 48 clinicians, care coordinators, and parents and medical record reviews of 60 patients with special health care needs receiving care in these practices. RESULTS: Initially, care coordination activities were prompted by patients' acute problems, and over time activities, tools, and policies were implemented to avert many such problems and expand the scope of services offered to patients. Example activities were making previsit calls with families, writing care plans, developing relationships with community agencies, and tracking referrals. Although some activities were common across practices, the persons involved and efforts toward different activities varied with practice context. Drivers included motivation and creativity of medical home teams, organizational changes, funding to expand care coordinator positions, protected time for such activities, and adoption of electronic record systems. CONCLUSIONS: In high-performing medical homes, care coordination activities changed from being mostly reactive to patients' episodic needs to being more systematically proactive and comprehensive. This shift was promoted by factors external and internal to the practice. Ensuring these factors in medical home implementation may accelerate adoption of proactive care coordination activities.

Outcomes for Children with Chronic Conditions Associated with Parent- and Provider-reported Measures of the Medical Home.

PURPOSE: Assess relationships between having a patient-centered medical home (PCMH) and health care utilization among low-income children with chronic conditions using parent and practice perspectives. METHODS: We analyzed data from 240 publicly insured children with chronic conditions. Parents completed surveys assessing PCMH access and their child's primary care practice completed the Medical Home Index (MHI) self-assessment. Multivariate negative binomial analyses were conducted to investigate relationships between PCMH and service use. RESULTS: Parent-report of a usual source of care was associated with lower rates of emergency care (ED) encounters and hospitalizations. Practice report of higher organizational capacity (e.g., communication, staff education) was associated with lower rates of ED visits and hospitalizations. Parent report of a PCMH was positively associated with practice MHI score. CONCLUSIONS: Among low-income children with chronic conditions, having a usual source of care and higher quality organizational capacity were associated with lower rates of ED visits and hospitalizations.

Pediatric to adult transition: a quality improvement model for primary care.

PURPOSE: To examine the relationship between quality improvement activities with pediatric and adult primary care practices and improvements in transition from pediatric to adult care. METHODS: This was a time-series comparative study of changes in pediatric and adult practices involving five large pediatric and adult academic health centers in the District of Columbia. Using the Health Care Transition Index (pediatric and adult versions), we examined improvements in specific indicators of transition performance, including development of an office transition policy, provider knowledge and skills related to transition, identification of transitioning youth, transition preparation of youth, transition planning, and transfer of care. RESULTS: Improvements took place in all six transition quality indicators in the pediatric and adult practices that participated in a 2-year learning collaborative to implement the "Six Core Elements of Health Care Transition," a quality improvement intervention modeled after the American Academy of Pediatrics/American Academy of Family Physicians/American College of Physicians Clinical Report on Transition. All sites established a practice-wide policy on transition and created an organized clinical process for tracking transition preparation. The pediatric sites conducted transition readiness assessments with 88% of eligible youth and prepared transition plans for 29% of this group. The adult sites conducted transition readiness assessments with 73% of eligible young adults and developed plans for 33%. A total of 50 were transferred in a systematic way to adult primary care practices. CONCLUSIONS: Quality improvement using the Six Core Elements of Health Care Transition resulted in the development of a systematic clinical transition process in pediatric and adult academic primary care practices.

Care coordination and unmet specialty care among children with special health care needs.

OBJECTIVES: Care coordination and the medical home may ensure access to specialty care. Children with special health care needs (CSHCN) have higher rates of specialty care use and unmet need compared with the general pediatric population. We hypothesized that care coordination, regardless of whether it was provided in a medical home, would decrease unmet specialty care needs among CSHCN and that the effect of care coordination would be greater among low-income families. METHODS: Secondary data analysis of participants in the 2009­2010 National Survey of CSHCN who reported unmet specialty care needs and for whom care coordination and medical home status could be determined (n = 18 905). Logistic regression models explored the association of unmet need with care coordination and medical home status adjusting for household income. RESULTS: Approximately 9% of CSHCN reported having unmet specialty care needs. Care coordination was associated with reduced odds of unmet specialty care need (without a medical home, odds ratio: 0.63, 95% confidence interval: 0.47­0.86; within a medical home, odds ratio: 0.22, 95% confidence interval: 0.16­0.29) with a greater reduction among those receiving care coordination within a medical home versus those receiving care coordination without a medical home. We did not find differences in the impact of care coordination by percentage of the federal poverty level. CONCLUSIONS: Care coordination is associated with family report of decreased unmet specialty care needs among CSHCN independent of household income. The effect of care coordination is greater when care is received in a medical home.

A survey of the preferences of primary care physicians regarding the comanagement with specialists of children with rare or complex conditions.

OBJECTIVES: To assess primary care pediatric providers' comfort with co-managing patients with rare conditions. METHODS: A survey was sent via an electronic link to pediatricians and family practitioners. Chi-square test of significance and Fisher's exact test were used for categorical variable comparisons and the Student's t test was used for continuous variable comparisons. RESULTS: Most of the providers believed that care decisions are most frequently made by the specialist with consultation with the primary care clinician. The most common source of information is direct communication from the specialist. The most effective tool to increase clarity and comfort about provider roles was an active care plan identifying current care needs, who will act on the plan, and when the action should be completed. CONCLUSIONS: Coordinated co-management in which caregiving roles are explicitly defined and tools are available for the timely exchange of information among all key participants warrants further study.

Current status of transition preparation among youth with special needs in the United States.

OBJECTIVE: To examine current US performance on transition from pediatric to adult health care and discuss strategies for improvement. METHODS: The 2009-2010 National Survey of Children with Special Health Care Needs is a nationally representative sample with 17 114 parent respondents who have youth with special health care needs (YSHCN) ages 12 and 18. They are asked about transition to an adult provider, changing health care needs, increasing responsibility for health care needs, and maintaining insurance coverage. We analyzed the association of selected characteristics with successful transition preparation. RESULTS: Overall, 40% of YSHCN meet the national transition core outcome. Several factors are associated with transition preparation, including female gender; younger age; white race; non-Hispanic ethnicity; income ≥400% of poverty; little or no impact of condition on activities; having a condition other than an emotional, behavioral, or developmental condition; having a medical home; and being privately insured. CONCLUSIONS: Most YSHCN are not receiving needed transition preparation. Although most providers are encouraging YSHCN to assume responsibility for their own health, far fewer are discussing transfer to an adult provider and insurance continuity. Although changes in sample design limit trend analysis, there have been no discernible improvements since this transition outcome was measured in the 2005-2006 National Survey of Children with Special Health Care Needs. The 2011 release of the American Academy of Pediatrics/American Academy of Family Physicians/American College of Physicians clinical recommendations on transition, new transition tools, and the spread of medical home should stimulate future improvements in transition performance.

Medical home transformation in pediatric primary care--what drives change?

PURPOSE: The aim of this study was to characterize essential factors to the medical home transformation of high-performing pediatric primary care practices 6 to 7 years after their participation in a national medical home learning collaborative. METHODS: We evaluated the 12 primary care practice teams having the highest Medical Home Index (MHI) scores after participation in a national medical home learning collaborative with current MHI scores, a clinician staff questionnaire (assessing adaptive reserve), and semistructured interviews. We reviewed factors that emerged from interviews and analyzed domains and subdomains for their agreement with MHI and adaptive reserve domains and subthemes using a process of triangulation. RESULTS: At 6 to 7 years after learning collaborative participation, 4 essential medical home attributes emerged as drivers of transformation: (1) a culture of quality improvement, (2) family-centered care with parents as improvement partners, (3) team-based care, and (4) care coordination. These high-performing practices developed comprehensive, family-centered, planned care processes including flexible access options, population approaches, and shared care plans. Eleven practices evolved to employ care coordinators. Family satisfaction appeared to stem from better access, care, and safety, and having a strong relationship with their health care team. Physician and staff satisfaction was high even while leadership activities strained personal time. CONCLUSIONS: Participation in a medical home learning collaborative stimulated, but did not complete, medical home changes in 12 pediatric practices. Medical home transformation required continuous development, ongoing quality improvement, family partnership skills, an attitude of teamwork, and strong care coordination functions.

An approach to family-centered coordinated co-management for individuals with conditions identified through newborn screening.

The care of individuals with rare heritable conditions, such as those detectable through newborn screening, is an important target for quality improvement. Not only is there great opportunity to improve long-term outcomes, but there are lessons that can be generalized to the care of all children with special health-care needs. To identify an approach to quality improvement for individuals with conditions identified through newborn screening, the National Coordinating Center for the Regional Genetic and Newborn Screening Service Collaboratives convened an expert workgroup to develop strategies based on a family-centered, community-based system of care. These recommendations centered on involving families, the primary care medical home, and specialty care providers as equal partners. Key activities to improve care include explicit care coordination, identification of the location of management, and planned co-management. To implement this model of care, the Regional Collaboratives will develop a clearinghouse of tools, engage in activities to evaluate the effectiveness of interventions to improve co-management, and identify strategies to align incentives for health-care providers and families to work together.

Parent partnerships in communication and decision making about subspecialty referrals for children with special needs.

OBJECTIVE: To describe factors that influence parent-clinician partnerships in information exchange and shared decision making (SDM) when children with special health care needs are referred to subspecialists. METHODS: We conducted focus groups with parents of children with special health care needs and pediatric primary care and subspecialty clinicians about how to include parents as partners in information exchange and SDM. Five parent and 5 clinician groups were held to identify themes to inform the development of interventions to promote parent partnerships; evaluate a prototype referral care plan and related parent supports as one example of a partnership tool; and compare the views of parents and clinicians. We used investigator triangulation and member checking to improve validity. RESULTS: Nineteen parents and 23 clinicians participated. Parents discussed partnerships more easily than clinicians did, though clinicians offered more ideas as sessions progressed. Parents and clinicians agreed on the importance of 3-way communication and valued primary care involvement in all stages of referral and consultation. SDM was seen by all as important; clinicians cited difficulties inherent in discussing unclear options, while parents cited insufficient information as a barrier to understanding. Use of a brief referral care plan, with parent coaching, was embraced by all parents and most clinicians. Clinicians cited time pressures and interference with work flow as potential barriers to its use. CONCLUSIONS: Parents and clinicians endorse partnership in referrals, though relatively greater enthusiasm from parents may signal the need for work in implementing this partnership. Use of a care plan to support parent engagement appears promising as a partnership tool.

Escherichia coli O115 forms fewer attaching and effacing lesions in the ovine colon in the presence of E. coli O157:H7.

Escherichia coli O115 has been isolated from healthy sheep and was shown to be associated with attaching-effacing (AE) lesions in the large intestine. Following previous observations of interactions between E. coli O157 and O26, the aim of the present study was to assess what influence an O115 AE E. coli (AEEC) would have on E. coli O157 colonisation in vitro and in vivo. We report that E. coli O115- and O157-associated AE lesions were observed on HEp-2 cells and on the mucosa of ligated ovine spiral colon. In single strain inoculum, E. coli O115 associated intimately with HEp-2 cells and the spiral colon in greater numbers than E. coli O157:H7. However, in mixed inoculum studies, the number of E. coli O115 AE lesions was significantly reduced suggesting negative interference by E. coli O157. Use of the ligated colon model in the present work has allowed in vitro observations to be extended and confirmed whilst using a minimum of experimental animals. The findings support a hypothesis that some AEEC can inhibit adhesion of other AEEC in vivo. The mechanisms involved may prove to be of utility in the control of AE pathovars.

Strategies for implementing screening for critical congenital heart disease.

BACKGROUND: Although newborn screening for critical congenital heart disease (CCHD) was recommended by the US Health and Human Services Secretary's Advisory Committee on Heritable Disorders in Newborns and Children to promote early detection, it was deemed by the Secretary of the HHS as not ready for adoption pending an implementation plan from HHS agencies. OBJECTIVE: To develop strategies for the implementation of safe, effective, and efficient screening. METHODS: A work group was convened with members selected by the Secretary's Advisory Committee on Heritable Disorders in Newborns and Children, the American Academy of Pediatrics, the American College of Cardiology Foundation, and the American Heart Association. RESULTS: On the basis of published and unpublished data, the work group made recommendations for a standardized approach to screening and diagnostic follow-up. Key issues for future research and evaluation were identified. CONCLUSIONS: The work-group members found sufficient evidence to begin screening for low blood oxygen saturation through the use of pulse-oximetry monitoring to detect CCHD in well-infant and intermediate care nurseries. Research is needed regarding screening in special populations (eg, at high altitude) and to evaluate service infrastructure and delivery strategies (eg, telemedicine) for nurseries without on-site echocardiography. Public health agencies will have an important role in quality assurance and surveillance. Central to the effectiveness of screening will be the development of a national technical assistance center to coordinate implementation and evaluation of newborn screening for CCHD.

Supporting the health care transition from adolescence to adulthood in the medical home.

Optimal health care is achieved when each person, at every age, receives medically and developmentally appropriate care. The goal of a planned health care transition is to maximize lifelong functioning and well-being for all youth, including those who have special health care needs and those who do not. This process includes ensuring that high-quality, developmentally appropriate health care services are available in an uninterrupted manner as the person moves from adolescence to adulthood. A well-timed transition from child- to adult-oriented health care is specific to each person and ideally occurs between the ages of 18 and 21 years. Coordination of patient, family, and provider responsibilities enables youth to optimize their ability to assume adult roles and activities. This clinical report represents expert opinion and consensus on the practice-based implementation of transition for all youth beginning in early adolescence. It provides a structure for training and continuing education to further understanding of the nature of adolescent transition and how best to support it. Primary care physicians, nurse practitioners, and physician assistants, as well as medical subspecialists, are encouraged to adopt these materials and make this process specific to their settings and populations.

National profile of children with Down syndrome: disease burden, access to care, and family impact.

OBJECTIVE: To measure the co-morbidities associated with Down syndrome compared with those in other children with special health care needs (CSHCN). Additionally, to examine reported access to care, family impact, and unmet needs for children with Down syndrome compared with other CSHCN. STUDY DESIGN: An analysis was conducted on the nationally representative 2005 to 2006 National Survey of Children with Special Health Care Needs. Bivariate analyses compared children with Down syndrome with all other CSHCN. Multivariate analyses examined the role of demographic, socioeconomic, and medical factors on measures of care receipt and family impact. RESULTS: An estimated 98,000 CSHCN have Down syndrome nationally. Compared with other CSHCN, children with Down syndrome had a greater number of co-morbid conditions, were more likely to have unmet needs, faced greater family impacts, and were less likely to have access to a medical home. These differences become more pronounced for children without insurance and from low socioeconomic status families. CONCLUSIONS: Children with Down syndrome disproportionately face greater disease burden, more negatively pronounced family impacts, and greater unmet needs than other CSHCN. Promoting medical homes at the practice level and use of those services by children with Down syndrome and other CSHCN may help mitigate these family impacts.

Response of porcine intestinal in vitro organ culture tissues following exposure to Lactobacillus plantarum JC1 and Salmonella enterica serovar Typhimurium SL1344.

The development of novel intervention strategies for the control of zoonoses caused by bacteria such as Salmonella spp. in livestock requires appropriate experimental models to assess their suitability. Here, a novel porcine intestinal in vitro organ culture (IVOC) model utilizing cell crown (CC) technology (CCIVOC) (Scaffdex) was developed. The CCIVOC model was employed to investigate the characteristics of association of S. enterica serovar Typhimurium strain SL1344 with porcine intestinal tissue following exposure to a Lactobacillus plantarum strain. The association of bacteria to host cells was examined by light microscopy and electron microscopy (EM) after appropriate treatments and staining, while changes in the proteome of porcine jejunal tissues were investigated using quantitative label-free proteomics. Exposure of porcine intestinal mucosal tissues to L. plantarum JC1 did not reduce the numbers of S. Typhimurium bacteria associating to the tissues but was associated with significant (P < 0.005) reductions in the percentages of areas of intestinal IVOC tissues giving positive staining results for acidic mucins. Conversely, the quantity of neutrally charged mucins present within the goblet cells of the IVOC tissues increased significantly (P < 0.05). In addition, tubulin-α was expressed at high levels following inoculation of jejunal IVOC tissues with L. plantarum. Although L. plantarum JC1 did not reduce the association of S. Typhimurium strain SL1344 to the jejunal IVOC tissues, detection of increased acidic mucin secretion, host cytoskeletal rearrangements, and proteins involved in the porcine immune response demonstrated that this strain of L. plantarum may contribute to protecting the pig from infections by S. Typhimurium or other pathogens.