What is Sustain™,LLC?
SustainTM, LLC: A.S.P.E.N.’s National Patient Registry for Nutrition Care is a comprehensive, web-based tool that allows clinicians to enter patient data, measure and analyze results, benchmark outcomes against the aggregate data, and publish findings. The purpose of Sustain is to maintain a prospective nutrition therapy registry in order to improve patient outcomes The registry is designed to address multiple aspects of nutrition care. Sustain’s initial phase focused on Home Parenteral Nutrition (HPN). The goals of this phase are complete, with the last patient data entered by January 31, 2015. Current efforts now focus on encouraging public use, analysis, and dissemination of this rich and unique data repository.
What is Home Parenteral Nutrition?
Parenteral nutrition is the intravenous administration of nutrients delivered into a large-diameter vein (usually the superior vena cava) or peripheral vein. HPN is indicated when the need for PN is greater than 2 weeks and the patient no longer requires hospitalization. HPN has allowed patients with intestinal failure a life-saving option and some individuals have survived for over 30 years on this therapy.
What is a patient registry?
According to the Agency for Healthcare Research and Quality (AHRQ), a patient registry is an organized system that uses observational study methods to collect uniform data (clinical and other) to evaluate specified outcomes for a population defined by a particular disease, condition, or exposure, and that serves one or more predetermined scientific, clinical, or policy purpose(s). The registry database is the file (or files) derived from the registry. Although registries can serve many purposes, AHRQ focused on registries that are created for one or more of the following purposes: to describe the natural history of disease, to determine clinical effectiveness or cost effectiveness of health care products and services, to measure or monitor safety and harm, and/or to measure quality of care.
What is the mission of Sustain?
The mission of this A.S.P.E.N. Nutrition Care Registry is to maintain a prospective, longitudinal nutrition therapy patient registry in order to improve patient outcomes. This registry is called the Sustain A.S.P.E.N.’s National Patient Registry for Nutrition Care. The specific goals of Sustain are to:
- Collect information regarding the patients and populations who require HPN in the U.S.,
- Measure outcomes associated with HPN,
- Allow institutional benchmarking against the aggregate data, and
- Publish and disseminate findings in order to improve the quality of care for patients receiving HPN, and
- Encourage public access and use of this data resource to address policy related issues and improve patient care
Why was Sustain developed?
Currently in the United States, little is known about the annual utilization of HPN. Medicare, the largest payer for home parenteral and enteral nutrition, does not generate specific public access reports on this patient population. The most recent published data from 2002 estimated that 39,000 people received HPN at that time. This estimate was based on home care infusion therapy databases, and does not represent the entire US population. HPN is a high risk, high-expenditure procedure, estimated to cost between $125,000 – $250,000 per year in 2010. In addition, this therapy is high risk considering PN-related morbidity and mortality. Patients requiring HPN may receive therapy for only a few months, or a lifetime. Prior to Sustain, a national registry did not exist to record how many patients received HPN, patient characteristics, diagnoses, or geographic patterns in order to evaluate the effectiveness and outcomes of this life-sustaining therapeutic procedure.
Who can participate in Sustain?
In the initial phase, participants were the individual sites. Sites successfully complete the enrollment process, which included Institutional Review Board (IRB) approval and signing of Participant Agreement. Sustain sites, as well as the public, now have access to this rich data source.
What kind of patients were entered into Sustain?
Patients on HPN, either newly discharged or existing on HPN were entered into Sustain. Adult and pediatric patients were included, but HPN patients in long-term care or rehabilitation facilities or patients on IDPN were not included.
Is there a fee to participate in Sustain?
Sustain did not charge organizations to participate or to receive their quarterly data. Access to Sustain's data is free for all active Sustain sites, but there may be fees associated with access to the public-use data for organizations that are not participating sites. See "How to Access Sustain Data" for more information.
Who will have access to the data?
Site participants have access to the data through system generated reports. The site and all data are protected through a secure, password protected system. Site participants received benchmarking reports to compare their own results against aggregate results of all sites participating in the program. The public now has access to this unique data source. See "How to Access Sustain Data" for more information.
Is the registry HIPAA compliant?
Sustain constitutes a Limited Data Set under HIPAA requirements and all patient identifiers under those requirements were not entered into the dataset. All persons using or receiving access to the data must sign a data use agreement through which he or she agrees to protect the privacy of the information received.
Who supports Sustain?
Sustain™, LLC is a subsidiary corporation owned by the American Society for Parenteral and Enteral Nutrition. Sustain has had additional sponsors. See Sustain's sponsors.
How long will the data be kept by the registry?
Indefinitely
Were data collected on co-morbidities/other diagnoses?
There is were a lot of data collected on multiple diagnostic categories and co-morbidities. Fore more information view Sustain's Data Directory.
What is the American Society for Parenteral and Enteral Nutrition (A.S.P.E.N.)?
A.S.P.E.N. is dedicated to improving patient care by advancing the science and practice of nutrition support therapy. Founded in 1976, A.S.P.E.N. is an interdisciplinary organization whose members are involved in the provision of clinical nutrition therapies, including parenteral and enteral nutrition. With more than 5,500 members from around the world, A.S.P.E.N. is a community of dietitians, nurses, pharmacists, physicians, scientists, students and other health professionals from every facet of nutrition support clinical practice, research and education.