Background and objective:
Health care use of children with medical complexity (CMC), such as those with neurologic impairment or other complex chronic conditions (CCCs) and those with technology assistance (TA), is not well understood. The objective of the study was to evaluate health care utilization and costs in a population-based sample of CMC in Ontario, Canada.
Hospital discharge data from 2005 through 2007 identified CMC. Complete health system use and costs were analyzed over the subsequent 2-year period.
The study identified 15 771 hospitalized CMC (0.67% of children in Ontario); 10 340 (65.6%) had single-organ CCC, 1063 (6.7%) multiorgan CCC, 4368 (27.6%) neurologic impairment, and 1863 (11.8%) had TA. CMC saw a median of 13 outpatient physicians and 6 distinct subspecialists. Thirty-six percent received home care services. Thirty-day readmission varied from 12.6% (single CCC without TA) to 23.7% (multiple CCC with TA). CMC accounted for almost one-third of child health spending. Rehospitalization accounted for the largest proportion of subsequent costs (27.2%), followed by home care (11.3%) and physician services (6.0%). Home care costs were a much larger proportion of costs in children with TA. Children with multiple CCC with TA had costs 3.5 times higher than children with a single CCC without TA.
Although a small proportion of the population, CMC account for a substantial proportion of health care costs. CMC make multiple transitions across providers and care settings and CMC with TA have higher costs and home care use. Initiatives to improve their health outcomes and decrease costs need to focus on the entire continuum of care.
"Youth with complex care needs have significant physical and/or mental health requirements (e.g., technology dependence, frequent and/or prolonged hospitalizations). They often rely on long-‐ term, life-‐supporting technologies to compensate for the loss of vital bodily functions (Cohen et al. 2012; Wagner 1998) and many require support from multiple agencies and inter-‐professional health care providers throughout their lives (Abbott et al. 2005). Whether young adults with complex care needs live at home with their family, in institutional or group home settings finding appropriate care as they transition from pediatric to adult systems can be difficult (Carnevale et al. 2008). "
[Show abstract][Hide abstract] ABSTRACT: Background
Whether young adults with complex care needs live at home with their family, in institutional or group home settings finding appropriate care as they transition from paediatric to adult systems can be difficult. Our objective was to understand the experiences, barriers and enablers entailed in transitioning three young adults with complex care needs from an institutional paediatric hospital setting to an adult community residence.Method: A descriptive design involving in-depth, semi-structured, qualitative interviews and a review of 14 h of meeting minutes. Interviews were conducted over the phone, in participants' homes, and at a paediatric rehabilitation hospital. Twenty-three participants, including 10 clinicians, 11 community partners, two young adults (21–23 years old) with complex care needs from [metropolitan area] Ontario, Canada. Results: Our findings indicate that clinicians, community partners and young adults with complex care needs encountered several enablers and barriers influencing their transition from a paediatric hospital to adult supportive housing. Enablers included structural factors (leadership, advocacy, timing/funding), availability of care (inter-agency partnerships), organization of care (model of care, inter-professional teamwork, extension of roles), and relational factors (communication, development of trust and rapport, family involvement). Barriers included structural factors (timing, funding), availability of care (appropriateness of housing), organization of care (changes in model of care, teamwork, role clarity), relational factors (communication, trust/rapport, family involvement) and personal factors (transition readiness). Conclusions: There are several challenges to overcome in preparing long-term hospitalized young adults with complex care needs to transition to adult supportive housing; however, these challenges may be overcome with targeted supports in several key areas.
Child Care Health and Development 04/2015; 41(3):397-407. DOI:10.1111/cch.12203 · 1.69 Impact Factor
"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 . "
[Show abstract][Hide abstract] ABSTRACT: Background
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.
BMC Health Services Research 06/2014; 14(1):283. DOI:10.1186/1472-6963-14-283 · 1.71 Impact Factor
"This framework has been operationalized into a series of International Classification of Diseases (ICD) diagnoses (subdivided into nine organ system categories) for identifying CCCs using hospital discharge abstracts. For the purpose of this study, CCCs were subdivided into those affecting a single (single CCCs) versus multiple body systems (multiple CCCs), as those affecting multiple body systems are associated with increased health care use . All hospital records from the first two years of life were used to define CCCs. "
[Show abstract][Hide abstract] ABSTRACT: Care giving for children with chronic diseases can lead to financial strain and compromised family well being. Little is known about whether these stresses lead to changes in residential movement patterns as they relate to income adequacy and proximity to care.
We compared the residential movement patterns and associated changes in neighbourhood income of children with mild to severe chronic diseases compared with those that are healthy. A cohort of infants born from 2002--2007 in Ontario, Canada was followed for 5 years and divided into those with single- or multiple- body system complex chronic conditions (CCCs); low birth weight (LBW); asthma/recurrent wheeze (A/RW) and the control group of otherwise healthy children.
Of 598,716 children studied, 15,207 had a single CCC, 3,600 multiple CCCs, 33,206 LBW, 57,137 A/RW and 489,566 were healthy. Lowest income quintile children were most likely to move residence. Compared with healthy controls, chronic disease cohorts, apart from those with asthma, were more likely to be born in the lowest income quintile neighbourhood and to move. Among children who moved, all chronic disease cohorts were significantly more likely to move to a low income quintile neighborhood (adjusted odds ratios for all chronic disease cohorts of 1.1-1.2). There were no differences across cohorts in residential movement close to a children's hospital.
Young children with chronic conditions, particularly those born in low income neighbourhoods, are more likely to move residence than other healthy young children. However, it does not seem that proximity to specialized care is driving this movement. Further research is required to determine if these movement patterns impact the ability of children with chronic conditions to secure health services.
International Journal for Equity in Health 08/2013; 12(1):62. DOI:10.1186/1475-9276-12-62 · 1.71 Impact Factor
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