Complex home care: Part 2- family annual income, insurance premium, and out-of-pocket expenses.

Annual costs paid by families for intravenous infusion of home parenteral nutrition (HPN) health insurance premiums, deductibles, co-payments for health services, and the wide range of out-of-pocket home health care expenses are significant. The costs of managing complex chronic care at home cannot be completely understood until all out-of-pocket costs have been defined, described, and tabulated. Non-reimbursed and out-of-pocket costs paid by families over years for complex chronic care negatively impact the financial stability of families. National health care reform must take into account the long-term financial burdens of families caring for those with complex home care. Any changes that may increase the out-of-pocket costs or health insurance costs to these families can also have a negative long-term impact on society when greater numbers of patients declare bankruptcy or qualify for medical disability.

Complex home care: part III--economic impact on family caregiver quality of life and patients' clinical outcomes.

Family caregivers perform a significant role in the care of patients with chronic illnesses and prescribed life-long complex home care treatments. Both quantitative and qualitative data from this study suggest the mental health burdens and financial costs of home parenteral nutrition (HPN) caregiving are extensive. In this study, the variability in HPN out-of-pocket expenses and the uncertainty of incurring such extensive costs created additional financial worries within already stressed families. Based on these data, interventions to improve caregivers' sleepiness, depression, and physical health could be hypothesized to improve both patients' and caregivers' quality of life and reduce the frequency of patients' catheter-related infections. These specific nursing interventions also could improve caregiver health and subsequently reduce the costs of caregivers' health care.

Complex home care: Part I--Utilization and costs to families for health care services each year.

As many as 120 persons per million people in the United States are dependent on the lifelong, complex, technology-based care of home parenteral nutrition (HPN) infusions. However, data for costs paid by families for HPN-related health care services and for non-reimbursed expenditures are rarely tabulated and most often underestimated. The goals of this study were to describe health care services used by families to manage HPN, report the frequency of each service used annually, and estimate the average annual non-reimbursed costs to families for these health services. The numerous and varied types of services reported and the time required to coordinate and access HPN services illustrates the challenges faced by patients and their family caregivers. The lack of a coordinated and efficient system for delivering complex chronic care results in poorer outcomes for HPN patients and their families on-reimbursed costs and the extensive amount of time required to coordinate multi-professional services negatively impacts the clinical outcomes and quality of life of complex chronic home care.

American Society for Parenteral and Enteral Nutrition Guidelines for the Selection and Care of Central Venous Access Devices for Adult Home Parenteral Nutrition Administration.

This document represents the American Society for Parenteral and Enteral Nutrition (ASPEN) clinical guidelines to describe best practices in the selection and care of central venous access devices (CVADs) for the infusion of home parenteral nutrition (HPN) admixtures in adult patients. The guidelines targeted adults >18 years of age in which the intervention or exposure had to include HPN that was administered via a CVAD. Case studies, non-English studies, or studies of CVAD no longer available in the United States were excluded. In total, 564 abstract citations, 350 from Medline and 214 from PubMed/non-MEDLINE databases, were scanned for relevance. Of the 564 citations, 13 studies addressed at least 1 of the 6 guideline-related questions, and none of the studies were prospective and randomized. The Grading of Recommendations, Assessment, Development and Evaluation (GRADE) criteria were used to adjust the evidence grade based on assessment of the quality of study design and execution. Recommendations for the CVAD type, composition, or number of lumens to minimize infectious or mechanical complications are based on a limited number of studies and expert opinion of the authors, all very experienced in home infusion therapy. No studies were found that compared best solutions for routine flushing of lumens (eg, heparin versus saline) or for maintaining catheters in situ while treating CVAD mechanical or infectious complications. It is clear that studies to answer these questions are very limited, and further research is needed. These clinical guidelines were approved by the ASPEN Board of Directors.

Technology dependence in home care: impact on patients and their family caregivers.

BACKGROUND: The purpose of this review is to explore how home technology care affects patients, family caregivers, and quality of life (QOL). METHODS: A literature search was conducted to identify studies of home parenteral nutrition (HPN) and other technology prescribed home care. RESULTS: Technology dependence influences health-related QOL. Patients and their family caregivers must balance the positive aspects of being in the home environment with the challenges of administering complex therapies at home. Patients and caregivers need additional support to reduce the physical, emotional, social, and financial burdens they experience. CONCLUSIONS: More research is needed to address effective interventions to reduce patient and caregiver burdens and to improve outcomes for technology-dependent individuals. A greater level of preparedness for managing home technology and technology-related problems may improve quality of life.

Central venous catheter infections in home parenteral nutrition patients: Outcomes from Sustain: American Society for Parenteral and Enteral Nutrition's National Patient Registry for Nutrition Care.

BACKGROUND: Home parenteral nutrition (HPN) is a high-cost, complex nutrition support therapy that requires the use of central venous catheters. Central line-associated bloodstream infections (CLABSIs) are among the most serious risks of this therapy. Sustain: American Society for Parenteral and Enteral Nutrition's National Patient Registry for Nutrition Care (Sustain registry) provides the most current and comprehensive data for studying CLABSI among a national cohort of HPN patients in the United States. This is the first Sustain registry report detailing longitudinal data on CLABSI among HPN patients. OBJECTIVE: To describe CLABSI rates for HPN patients followed in the Sustain registry from 2011-2014. METHODS: Descriptive, χ2, and t tests were used to analyze data from the Sustain registry. RESULTS: Of the 1,046 HPN patients from 29 sites across the United States, 112 (10.7%) experienced 194 CLABSI events during 223,493 days of HPN exposure, for an overall CLABSI rate of 0.87 episodes/1,000 parenteral nutrition-days. Although the majority of patients were female (59%), adult (87%), white (75%), and with private insurance or Medicare (69%), CLABSI episodes per 1,000 parenteral nutrition-days were higher for men (0.69 vs 0.38), children (1.17 vs 0.35), blacks (0.91 vs 0.41), and Medicaid recipients (1.0 vs 0.38 or 0.39). Patients with implanted ports or double-lumen catheters also had more CLABSIs than those with peripherally inserted or central catheters or single-lumen catheters. Staphylococci were the most commonly reported pathogens. These data support findings of smaller studies about CLABSI risk for children and by catheter type and identify new potential risk factors, including gender, race, and insurance type. CONCLUSIONS: Additional studies are needed to determine effective interventions that will reduce HPN-associated CLABSI.

Uncertainty about the clinical detection of sepsis.

Clinicians use clinical symptom, blood culture, and central venous catheter (CVC) culture data to detect CVC-related sepsis. The lack of clear and consistent definitions for what constitutes accurate clinical symptom assessments, coupled with the different combinations for blood and CVC culture results, contribute to clinicians' uncertainty about the presence of CVC-related sepsis. When clinical symptoms do not correlate with laboratory culture results, patients are exposed to risks associated with CVC manipulation and inappropriate antibiotic therapy. Clinicians must recognize the sources of uncertainty when assessing patients for CVC-related sepsis.

National clinical guidelines and home parenteral nutrition.

Research-based guidelines provide the best evidence and are the cornerstones of achieving quality outcomes for home parenteral nutrition (HPN) patients and their families. However, evidence about the implementation of HPN guideline recommendations is rarely reported. The purpose of this clinical practice project was to compare HPN clinical guidelines with baseline data reported by HPN patients from 1990-2010 and to explore possible facilitators or barriers to the implementation of guidelines in clinical practice. Methods included PubMed literature searches for HPN clinical guidelines and comparison of the retrieved guidelines with HPN clinical data reported by HPN patients from 3 separate studies conducted in the United States from 1990-2010. Results of reviewing published HPN guidelines found recommendations based primarily on expert opinion and included the appropriate use of HPN, coordination of care by teams of experts, use of dedicated ports, salvaging catheters when possible, and bowel transplantation. Comparison of baseline data over the 2 decades indicated that guidelines for the appropriate use and types of central venous catheters were being implemented, but there was little evidence that most HPN patients had their care coordinated by multidisciplinary teams. Conclusions are that most HPN guideline recommendations were being implemented in practice except for the care delivered by multidisciplinary experts. To ensure quality HPN outcomes, multidisciplinary teams of HPN experts are needed as are large data sets that will provide indicators of guideline use and outcomes. Furthermore, research is needed so that recommendations are not based totally on expert consensus.