Last month, the 41st annual European Society for Clinical Nutrition and Metabolism (ESPEN) Congress took place in the beautiful city of Krakow in Poland. It is always a privilege to hear from leading experts in their field, but it is particularly special when a variety of disciplines are brought together with one aim — the advancement of care for people with nutritional or metabolic needs.
A key milestone at the congress was a presentation on the newly-updated home parental nutrition (HPN) guidelines, which, as we recently highlighted, are of paramount importance in helping patients get the most up-to-date care.
HPN is a specialized drip that provides liquid nutrients directly into a person’s vein, bypassing their digestive system. A person may rely on this nutritional care if their digestive system cannot absorb or tolerate the food they need.1 People who have a condition known as short bowel syndrome with intestinal failure (SBS-IF) often rely on HPN as they are unable to absorb sufficient nutrients from the food they eat to survive due to loss of intestinal capacity.2,3 SBS-IF can occur for many reasons – Crohn’s disease, vascular complications such as emboli, or even an accident leading to surgery – and results in a person having a shorter intestine, or even no intestine at all.4
A common factor for all people on HPN is the burden it places on them and their families. Mortality rates are high among people with SBS-IF receiving HPN, with survival rates declining over time.5 With some connected to their drip for 10–18 hours,6 for an average of five days (range: 3–7 days) per week,7 HPN can also significantly restrict their lives. Without witnessing this first-hand, it is hard to appreciate the full psychological impact. That is why we have recently launched a short video about Robyne’s Story, who became dependent on HPN following an ankle breakage and a series of surgical complications.
As it is vital to the health of those who rely on it, HPN must be delivered under optimal conditions, with the ongoing support and input of nutritional experts. However, there are inconsistencies in the quality of care, as outlined in a policy paper and EU Parliamentary event on chronic intestinal failure, funded by Shire, now part of Takeda. For example, some people may need to travel to another country to receive care, or there is a lack of trained healthcare professionals to show people how to administer HPN; this often results in incomplete care or an increased risk of complications such as infections.
Experts from ESPEN worked with patients to provide 71 new recommendations, focusing on HPN management monitoring, how to define HPN centers and created standard operating procedures. The HPN use in practice will also be illustrated by data from patient registries in Spain, US, UK, Italy and Canada.
We believe that the new recommendations within these guidelines, all based on patient insights and evidence from the real world, are an important step in the right direction in making sure those who rely on HPN are receiving the best possible care. Once publicly available, the next step is ensuring these recommendations are disseminated as widely as possible. At Takeda, we will be working closely with the medical and patient communities to help make this happen.