Economic impact of intestinal failure from a patient perspective – A pilot study

TL;DR

This pilot study explores the financial burden of intestinal failure on patients, showing high out-of-pocket expenses and lost income.

Contribution

The study quantifies the economic impact of intestinal failure from the patient's perspective using a tailored questionnaire.

Findings

Patients spent an average of AUD $6099 annually on out-of-pocket expenses for intestinal failure.

Medications were the highest individual cost, averaging AUD $2160 per year.

Patients in metropolitan areas and those with motility disorders faced higher expenses.

Abstract

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.

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).

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.

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.