ASPEN survey of parenteral nutrition access issues: How the system fails the patient.

Background: Product shortages and a lack of qualified providers to manage care may impact the safety and efficacy of parenteral nutrition (PN). This survey assessed the frequency and extent to which limitations to PN-related access affects patients.

Methods: Outpatient/patients receiving home PN were surveyed. Questions were developed to characterize the population and determine the extent and severity of PN access issues with components, devices, healthcare professionals, and transfers of care. Reimbursement issues surveyed included insurance coverage, contribution of healthcare costs to annual income, and the extent to which adjunctive therapy was reimbursed. Burdens surveyed included impact on disease symptoms and medical outcomes as well as the types and frequency of medical or system errors experienced, adverse events, or resultant nutrition problems.

Results: Respondents (N = 170) were well educated, rented or owned their own home, and were either employed or retired. All age populations were represented. Patients made frequent contact with care providers. Most were able to manage PN costs but feared losing insurance or changes to insurance. Patients used additional prescribed therapies that are poorly covered by insurance. Patients reported symptoms or exacerbation of disease, development or worsening of malnutrition, and episodes of nutrient deficiency. Patients noted errors occur, especially during periods of transitions of care, when they also often encounter clinicians with little understanding of PN. These are high-acuity patients who have difficulty finding providers for their care.

Conclusion: This patient survey provides evidence that access issues can result in the "failure of the PN system" to assure care is consistently safe and effective.