Addressing the Transition to Adult Health Care for Adolescents and Young Adults with Pancreatic Disorders.

INTRODUCTION:  The transition from pediatric to adult health care is a vulnerable time period for adolescents and young adults (AYA). Guidance on how to effectively implement transition support for AYA with recurrent acute pancreatitis (RAP) and chronic pancreatitis (CP) is lacking. METHODS:  To address this gap, we formed a consortium of pancreatic centers that would work in coordination to test interventions to improve the transition for AYA with RAP and CP. We then performed a baseline assessment of consortium resources and patient transition readiness and developed an educational toolkit for AYA with RAP and CP.  Results: Our consortium consists of three National Pancreatic Centers of Excellence, each with a multidisciplinary team to work with AYA with RAP and CP. While our patients ages 18 to 23 were generally seen at the pediatric centers, the baseline assessment of transition readiness suggests that our patients may have higher transition readiness scores than other populations. The educational toolkit contains both pancreas-specific and general guidance to support AYA with RAP and CP during their transition, including guidance on nutrition, pain management, and finding an adult gastroenterologist.  Conclusions: We have formed a consortium to test interventions to improve the transition to adult health care for AYA with RAP and CP. We have completed a baseline assessment and developed our first intervention: an educational tool kit. Future work planned includes tests of the tool kit and efforts to improve rates of transfer to an adult provider for YA with RAP and CP.

Identifying key components of a web-based long term care planning intervention for family caregivers of individuals with intellectual/developmental disabilities.

BACKGROUND: Few family caregivers of individuals with intellectual or developmental disabilities develop long-term care (LTC) plans for their relative. Web-based interventions promoting LTC planning have potential for widespread adoption into clinical practice. METHODS: We conducted focus groups with 49 primary caregivers of individuals with intellectual or developmental disabilities in NY, PA, OH, DE, and TX to identify barriers and facilitators of LTC planning, review existing tools, and identify critical features for web-based LTC planning interventions. Participants also answered questions on demographic characteristics and functional status. RESULTS: NVivo qualitative analysis software was used to analyse focus groups using a grounded theory approach. Caregivers identified web tool accessibility and topics such as finances, housing, and government benefits as critical. Caregivers also described desired features for a LTC planning tool. CONCLUSIONS: This study identified desired characteristics of web-based LTC planning tools and ways in which existing web-based interventions might be adapted or enhanced.

The health care transition research consortium health care transition model: a framework for research and practice.

The body of health care transition (HCT) research is in the early stages of development. One of the major limitations of this developing field of research is the lack of theoretically-directed studies. This research limitation has hindered understanding of the variables contributing to successful HCT. The inadequate understanding of HCT is due largely to the absence of an adequate conceptual model that addresses the complexity and the relationships amongst variables that influence HCT outcomes among adolescents and emerging adults with special health care needs (AEA-SHCN). Existing conceptual models do not sufficiently address the significant interrelationships amongst variables to explain, predict and/or control AEA-SHCN's biopsychosocial HCT outcomes. This article provides a description of a health care transition theoretical model developed by the international and interdisciplinary Health Care Transition Research Consortium (HCTRC) that can be applied for testing in research and serve as a framework for clinical practice and policymaking. The HCTRC model is composed of four domains that are considered integral to the HCT phenomenon: Individual, Family/Social Support, Environment, and the Health Care System. The HCTRC model specifies the variables, processes, and potential mediators and moderators that affect the HCT outcomes.

Implementation and sustainability of statewide transition support services for youth with intellectual and physical disabilities.

PURPOSE: Significant gaps in care and limited existing models establish the need to innovate systems of care for youth with special health care needs in the transition between pediatric to adult health care settings. METHODS: Using implementation science, a statewide transition support program was created. University and community partners explored needs and adopted a strategic plan and funding sources. The existing consensus statement provided a framework. A team was hired, policies were piloted and the initial ambulatory consultative transition service for youth with special needs ages 11 to 22 was launched. Full program activities during year four were analyzed. RESULTS: During 2011, there were 139 consultations for youth with intellectual disability and/or physical disability (average 16.74 years, 46% female). Services include routine and focused co-morbidity screening and recommendations, care coordination of complex health and community service needs, and support for families. The evolving transdisciplinary team adapted their methods to collaborate with a growing population of youth and primary care providers. CONCLUSION: A statewide transition support program is a viable delivery model to provide needed resources for youth, families and primary care practices. Weekly improvement meetings continue to adapt services to sustain family satisfaction and community provider satisfaction.

Assessing the health, functional characteristics, and health needs of youth attending a noncategorical transition support program.

PURPOSE: To assess the health, functional characteristics, and health care service needs of youth and young adults with special health care needs attending a comprehensive, noncategorical transition program. METHODS: A self-administered survey was developed from national health surveys and clinical experience to assess concepts identified as important for successful transition to adulthood. Surveys were mailed to 198 parents of youth and young adults with special health care needs attending the transition clinic. Parents were asked about the youth's health, functional status, and health care services needed. The clinical database provided demographic and patient health characteristics. Results were compared against the 2005-2006 National Survey of Children with Special Health Care Needs. RESULTS: Forty-four percent of surveys were returned. Average age of youth was 17.5 (11-22) years old and diagnoses included cerebral palsy (36%), spina bifida (10%), developmental delay or Down syndrome (17%), and autism (6%). Most youth needed assistance with personal care (69%) and routine needs (91%) and used assistive devices (59%). Compared with the 2005-2006 National Survey of Children with Special Health Care Needs, parents reported higher needs for all services except mental health care and tobacco or substance use counseling. Forty three percent reported at least one unmet health need. Few parents reported the need for counseling on substance use (1%), sexual health screening (16%), nutrition (34%), and exercise (41%). CONCLUSIONS: Youth attending our transition program had more functional limitations, poorer reported health status, different diagnosis distribution, and higher levels of needed health services. Few parents identified needs for other recommended adolescent preventive services. Transition programs should assess patient health characteristics and service needs to design effective patient-centered services.

A systematic review of clinical diagnostic systems used in the diagnosis of tuberculosis in children.

Background. Tuberculosis (TB) is difficult to diagnose in children due to lack of a gold standard, especially in resource-limited settings. Scoring systems and diagnostic criteria are often used to assist in diagnosis; however their validity, especially in areas with high HIV prevalence, remains unclear. Methods. We searched online bibliographic databases, including MEDLINE and EMBASE. We selected all studies involving scoring systems or diagnostic criteria used to aid in the diagnosis of tuberculosis in children and extracted data from these studies. Results. The search yielded 2261 titles, of which 40 met selection criteria. Eighteen studies used point-based scoring systems. Eighteen studies used diagnostic criteria. Validation of these scoring systems yielded varying sensitivities as gold standards used ranged widely. Four studies evaluated and compared multiple scoring criteria. Ten studies selected for pulmonary tuberculosis. Five studies specifically evaluated the use of scoring systems in HIV-positive children, generally finding the specificity to be lower. Conclusions. Though scoring systems and diagnostic criteria remain widely used in the diagnosis of tuberculosis in children, validation has been difficult due to lack of an established and accessible gold standard. Estimates of sensitivity and specificity vary widely, especially in populations with high HIV co-infection.