A subgroup of children with special health care needs (CSHCN) have chronic and complex medical conditions and frequently attend the emergency department (ED). Some of these ED visits could be prevented through appropriate clinician advice or, if an ED visit is unavoidable, the management time could be decreased. We set out to determine whether an ED-based advice and coordination programme was feasible and could prevent or accelerate ED care for these patients. METHODS, SETTING AND PATIENTS: We identified CSHCN who frequently attended the ED at a large tertiary children's hospital. These patients were enrolled in an ED-based coordination programme, the Accelerated Care through Emergency (ACE) programme providing 24-hour mobile-phone access to experienced ED nurses. We prospectively tracked usage patterns and determined the rate of ED visits after receiving phone advice and the waiting time for patients to be seen in ED. Parental satisfaction and cost of the programme were also assessed.
After a pilot phase in 2002, enrollment in the programme increased from 125 in 2003 to 220 patients in 2006. Patients had a broad range of medical conditions. All had two or more and up to 22 medical services involved in their care. 80% of patients used a technical device or implant. Phone calls increased from an initial average of 31 per month in 2003 (0.24 calls per participant) to 66 per month in 2006 (0.3 calls per participant), 60% of which were after hours. The percentage of ED reviews per phone call dropped from an initial 74.2% (95% CI 55.2%-88.1%) in 2003 to 50.0% (95% CI 37.4%-62.5%) in 2006 (p = 0.02). However, decreases in ED visits and admissions as a percentage of enrolled patients and as a percentage of phone calls to ACE staff were not statistically significant. Mean waiting time for enrolled patients remained below 30 minutes. Parent satisfaction with the programme was rated 8.3 on a 0-10 scale (0 meaning poor, 10 meaning excellent). The approximate cost of the programme per child was AU$750 (292 pounds sterling) per year.
We have developed a coordinated approach towards the provision of healthcare for a group of families with diverse severe chronic medical conditions who frequently present to the ED. Through a comprehensive programme including the development of patient-care plans, care coordination and 24-hour mobile-phone access we were able to enhance families' capacities to manage their children's conditions in the community.
"Many depend on medical technology and highly specialized care to optimize their quality of life and universally 'require multiple services from multiple sectors, in multiple locations' (Law & Rosenbaum 2004). CMC are at risk of repeated and prolonged hospitalizations (Simon et al. 2010), medical errors (Sacchetti et al. 2000; Slonim et al. 2003) and poor health outcomes (Srivastava et al. 2005; Gordon et al. 2007); all of which may result in costly and often inefficient use of healthcare resources (Sutton et al. 2008). "
[Show abstract][Hide abstract] ABSTRACT: Background 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.
Results Model 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.
Child Care Health and Development 01/2013; 41(1). DOI:10.1111/cch.12122 · 1.69 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: The broad objective of this dissertation research was to examine the health care system experiences of a vulnerable population: children with complex special health care needs. This dissertation consists of three related studies designed to address gaps in the current literature, with the goal of informing policy discussions surrounding children with complex needs. The first study developed a measure to identify and describe children with complex special health care needs and applied this measure to the 2005 National Survey of Children with Special Health Care Needs. Compared to children with low to moderately complex special health care needs, high complexity children present a unique diagnostic profile and a high level of unmet needs. Additionally, families with high complexity children frequently report logistical and provider level barriers to care not commonly reported among the broader special needs population. The second study, utilizing the measure of complexity developed in the first study, presents a profile of care coordination services for children with complex health care needs and presents support for the hypothesis that receiving adequate care coordination is associated with reductions in unmet needs for services. However, only 35.6% of high complexity children receive effective care coordination. For the third study, 122 parents whose children attended a pediatric home ventilator clinic (84% of the patient population) completed a survey in order to assess the themes of unmet need and care coordination among children dependent on ventilators. More than half of families reported unmet needs for care, most frequently therapeutic services and home health care. There was a low level of unmet need for preventive and specialty care. Overall, this research demonstrates that children with complex special health care needs should be the focus of independent studies and policy discussions. Future research that does not separate the heterogeneous population of children with special health care needs by complexity will fail to identify the unique barriers to care faced by this group, leading to policies that do not benefit high complexity children and their families.
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