Year: 2025
Type: article
Study design: Observational Study
Abstract: Background: Intestinal Failure (IF) is a complex and life-long illness, requiring home parenteral and/or enteral nutrition, multiple medications, dietary changes and input from multiple healthcare specialists. The aim of this pilot study is to quantify the economic impact of IF from the patient perspective. Materials and methods: A tailored questionnaire was developed, piloted and administered to adult IF patients within a quaternary hospital in Sydney, Australia. The questionnaire collected health-related out-of-pocket expenses (OOPE) over the past 12-months. Data was analysed using descriptive statistics (median and range). Results: A total of 13 participants responded to the questionnaire. OOPE in a 12-month period was AUD $6099 (AUD $3170 - $45,744); this was 24.4 % of annual reported income. OOPE for participants in metropolitan regions were higher than those living in regional or rural regions (AUD $6538 versus AUD $6099, respectively). Participants with a motility disorder spent more on total OOPE than those without a motility disorder (AUD $7178 versus AUD $3905); with the majority of people living in metropolitan regions. OOPE for medications was the highest individual cost per year, AUD $2160 (AUD $820 - $6000). Average potential lost income was AUD $62,310 per annum. Conclusion: This pilot study shows the significant economic burden for people living with IF, including loss of income. Results warrant expansion to assess burden over a larger patient group. IF services need to be aware of the financial burden experienced by this patient group and ensure they are supported to access financial aid where eligible.
Source: Intestinal failure.
Authors: Maddison Breen, Quiney Lin, Liz Beyer, Michelle Cunich, Sharon Carey
Language: English
Subfield: Economics and Econometrics
Domain: Social Sciences
Open Access status: gold
Estimated APC paid: $2,750
OpenAlex ID: W4411859571