BACKGROUND: The landscape of nutrition support faces challenges, including rising costs, product shortages, reimbursement gaps, and infusion providers closing. This nationwide survey aimed to describe the perceptions and attitudes related to costs, therapy access, and mental health among households with at least one family member requiring enteral nutrition, parenteral nutrition, or a combination of the two. METHODS: A 10-item online survey was available for 8 weeks to households of adult (>18 years old) and pediatric patients (1-17 years old) currently receiving or who had received enteral or parenteral nutrition at home within the past 12 months. The survey explored beliefs and attitudes regarding financial impact, access to care, food security, coping mechanisms, and mental health. RESULTS: Of the 182 participants, 42.9% were on enteral nutrition, 32.4% were on parenteral nutrition, and 24.7% were both. Overall, 52% reported a degree of financial concern due to nutrition therapy costs. About 51% of families described difficulties obtaining nutrition therapy related to cost or insurance coverage. A total of 52.7% of households reported worrying about food security. Over half, 63.7%, reported an impact on their mental health. CONCLUSION: Our findings support that various factors, including the cost of therapy, can negatively impact the economic stability and mental health of families with a member on enteral or parenteral nutrition. These findings highlight the importance of screening for social determinants of health to identify opportunities for intervention through the provision of additional resources and patient advocacy.
Gardner et al. (Thu,) studied this question.