A Tertiary Care–Primary Care Partnership Model for Medically Complex and Fragile Children and Youth With Special Health Care Needs
To evaluate the impact of a tertiary care center special needs program that partners with families and primary care physicians to ensure seamless inpatient and outpatient care and assist in providing medical homes.
Up to 3 years of preenrollment and postenrollment data were compared for patients in the special needs program from July 1, 2002, through June 30, 2005.
A tertiary care center pediatric hospital and medical school serving urban and rural patients.
A total of 227 of 230 medically complex and fragile children and youth with special needs who had a wide range of chronic disorders and were enrolled in the special needs program.
Care coordination provided by a special needs program pediatric nurse case manager with or without a special needs program physician.
Preenrollment and postenrollment tertiary care center resource utilization, charges, and payments.
A statistically significant decrease was found in the number of hospitalizations, number of hospital days, and tertiary care center charges and payments, and an increase was found in the use of outpatient services. Aggregate data revealed a decrease in hospital days from 7926 to 3831, an increase in clinic visits from 3150 to 5420, and a decrease in tertiary care center payments of $10.7 million. The special needs program budget for fiscal year 2005 had a deficit of $400,000.
This tertiary care-primary care partnership model improved health care and reduced costs with relatively modest institutional support.
Available from: Sherri Adams
- "Among CSHCN is a particularly vulnerable subgroup, known as children with medical complexity (CMC), who are characterized by substantial family-identified service needs, chronic and severe conditions, functional limitations, and extraordinarily high health care use . While accounting for < 1% of all children, CMC consume almost one third of all paediatric health resources , and are at increased risk of multiple and prolonged hospitalizations, frequent medical errors , poor health outcomes , stress on family caregivers , and inefficient use of health care resources , which may be a result of poor care coordination . "
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Children with medical complexity (CMC) are characterized by substantial family-identified service needs, chronic and severe conditions, functional limitations, and high health care use. Information exchange is critically important in high quality care of complex patients at high risk for poor care coordination. Written care plans for CMC are an excellent test case for how well information sharing is currently occurring. The purpose of this study was to identify the barriers to and facilitators of information sharing for CMC across providers, care settings, and families.
A qualitative study design with data analysis informed by a grounded theory approach was utilized. Two independent coders conducted secondary analysis of interviews with parents of CMC and health care professionals involved in the care of CMC, collected from two studies of healthcare service delivery for this population. Additional interviews were conducted with privacy officers of associated organizations to supplement these data. Emerging themes related to barriers and facilitators to information sharing were identified by the two coders and the research team, and a theory of facilitators and barriers to information exchange evolved.
Barriers to information sharing were related to one of three major themes; 1) the lack of an integrated, accessible, secure platform on which summative health care information is stored, 2) fragmentation of the current health system, and 3) the lack of consistent policies, standards, and organizational priorities across organizations for information sharing. Facilitators of information sharing were related to improving accessibility to a common document, expanding the use of technology, and improving upon a structured communication plan.
Findings informed a model of how various barriers to information sharing interact to prevent optimal information sharing both within and across organizations and how the use of technology to improve communication and access to information can act as a solution.
Available from: Faustina Lalatta
- "As observed in Prader–Willi syndrome [Schrander- Stumpel et al., 2007], their physiological aging may be accelerated. Moreover, as they develop the joint contractures, type II diabetes, obesity, diverticulosis, vascular stenosis, and hypertension typical of the elderly much earlier in their lives (Table I), they have a greater need for hospitalization because of medical complications or surgical interventions [Cherniske et al., 2004; Gordon et al., 2007]. However, there are no specific services for adults with developmental disabilities [Stille and Antonelli, 2004; Sullivan et al., 2011], and hospitalization in adult Internal Medicine, Surgery or Rehabilitation Units may be a considerable challenge because they are reluctant to accommodate patients with developmental disabilities [Royal College of Paediatrics and Child Health, 2003; Bedeschi et al., 2011]. "
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ABSTRACT: There are between 5,000 and 8,000 distinct rare diseases (RDs) affecting 6-8% of the population, most of which are caused by genetic defects. Many are highly complex, childhood-onset, multi-system disorders that are often associated with developmental disability, and require lifelong, highly specialized care and support. As larger numbers of children with previously fatal RDs survive into adulthood, they encounter significant challenges in transitioning from family-centered, developmentally focused, multidisciplinary pediatric care to a less supportive adult healthcare system that is often unfamiliar with these conditions. This paper discusses the challenges of the transition from pediatric to adult health care in two groups of patients with multisystem genetic RDs (neurofibromatosis 1 [NF1] and Williams-Beuren syndrome [WBS]), and analyzes strategies for making the process easier for patients with and without developmental disabilities. Our findings show that there are still no guidelines in national healthcare programs on how to transition RD adolescents with and without developmental disabilities, and only a few pediatric centers have implemented the elements of transition in their general practice. Evidence regarding programs to facilitate transition is inconclusive and the transition from pediatric medicine to adult medicine for RDs remains a major challenge. However, transition requires both time and personnel, which are difficult to find in periods of fiscal austerity. Nevertheless, we should strongly advocate for governments investing more into transition infrastructure or they will face increased long-term social and economic costs due to poor treatment compliance, disengagement from services, increased genetic risks, and higher rates of disease-related complications. © 2013 Wiley Periodicals, Inc.
Available from: Shauna Kingsnorth
- "Several studies have found that hospital-based care co-ordination models are effective at reducing health-related expenditures and improving family-centredness of care (e.g. Rahi et al. 2004; Gordon et al. 2007; Antonelli et al. 2008). Virtually all studies evaluating such programmes have focused on the effectiveness of care co-ordination rather than the process of system integration of services. "
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Integrated care has important implications for children with medical complexity (CMC) who rely on care and service delivery involving multiple providers in different places over time. Most studies describing complex care programmes focus on the effectiveness of care co-ordination rather than the process of system integration. This pilot study explores the implementation process of the Integrated Complex Care Model: a voluntary partnership between acute, rehabilitative and community care aimed at system integration through a key worker model to improve care co-ordination for CMC. Methods
This descriptive study used qualitative analyses and syntheses to explore the process of inter-organizational collaboration under real-life' circumstances. Multiple methods and sources of data were gathered to support triangulation in understanding of enablers and barriers to model implementation. Forty hours of meeting minutes and administrative databases housing patient records were reviewed. Baseline demographic information was available for 23 families, including child health-related quality of life and healthcare utilization. A subset of 12 parental caregivers and 21 additional key informants participated in individual interviews or focus groups. Findings are presented using King and Meyer's description of system integration and care co-ordination. ResultsModel enablers included dedication, timing, leadership and electronic care plan use/communication among key workers, families and health providers. Barriers included assumptions about partner organizations, differing organizational structures and client information systems, constrained project resources and limited engagement of primary care. Parents perceived an electronic care plan as a facilitator of timely and effective care for CMC across multiple settings. Conclusions
At a systems level, the integrated model fostered collaboration between partner organizations. At a family level, development of inter-organizational management structures and communication platforms; provision of adequate resourcing; and increased engagement of primary care may enable high level organizational integration aimed at improved care co-ordination for CMC.
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