To alleviate the burden of intestinal failure (IF) on patients, healthcare systems and society, ATLAS has identified six key areas of unmet need to be addressed.1
Unmet need 1
IF is treatable, but there is inequality of access to treatment between and within countries1
Currently, IF lacks a complete set of widely implemented country-level guidelines. Only four of 24 European countries have national IF guidelines.2,3,4,5
How can healthcare professionals (HCPs) and policymakers help?1
HCPs should implement country-level guidelines on treating and managing IF or adopt the ESPEN guidelines.
Policymakers should oversee the implementation of national guidelines on treating and managing IF or by adopting ESPEN guidelines.
Policymakers should ensure that European Reference Networks (ERNs) are sufficiently equipped and resourced to provide leadership to improve Europe-wide health outcomes in IF.
Unmet need 2
There is a need to disseminate agreed epidemiology and quality standards within and between countries.1
A lack of clear epidemiological data makes it difficult for countries to make a case for access to orphan drugs for rare diseases such as IF.
Epidemiological data on prevalence and outcomes for patients with IF, such as survival rates on home parenteral nutrition (HPN) and central venous catheter (CVC)-related infection, will aid identification of gaps in healthcare services that need addressing.
Without an appropriate International Classification of Disease (ICD) code for IF and SBS6, it is difficult to generate the outcomes and epidemiology data that are vital to the maintenance of best-practice medical guidance.
How can HCPs, patient organisations and policymakers help?1
HCPs should engage in data collection and reporting, e.g. by encouraging the set-up of registries for IF.
HCPs and societies should lead efforts to establish a functioning ICD code for IF.
Patient organisations are encouraged to advocate for the implementation of a functioning ICD code.
Policymakers should advocate for the implementation of an ICD code.
Unmet need 3
There is an opportunity to improve stakeholder understanding of IF.1
Like other rare diseases, a lack of sufficient awareness has a large impact7 on patients with IF.
Awareness of IF and options for its treatment among general practitioners and non-specialist clinicians is low, delaying diagnosis.
How can HCPs, patient organisations and policymakers help?1
HCPs can provide training to non-specialist clinicians and healthcare professionals on managing diagnosis and management of patients with IF.
Patients are encouraged to establish IF specific patient groups at a national level, facilitated by engaging with regional organisations.
Policymakers should encourage and fund professional organisations/regulators to provide training.
Policymakers should encourage and fund the establishment of IF specific patient groups at a national level.
Unmet need 4
Current home and social care are not optimal to meet the quality of life needs of those with IF and their families1
Factors affecting quality of life include, but are not limited to, frequent bowel movements or stoma bag emptying,8 impaired sleep and fatigue, psychosocial burdens on families and patients including lack of social activity, depression, body image issues and disrupted relationships, as well as financial constraints through healthcare fees.9
How can HCPs, patient organisations and policymakers help?1
HCPs should utilise relevant quality of life measurement tools when assessing IF patients.
Patients are encouraged to advocate for the use of relevant quality of life measurement tools for IF patient assessments.
Policymakers should integrate relevant quality of life measurement tools for assessing IF patients.
Unmet need 5
There is inadequate research to drive service improvement.1
Clinically-focused research is vital to improve our understanding of IF and will ultimately lead to effective new treatment options and improved patient management and care.
The absence of an International Classification of Disease (ICD) code for IF or SBS6 makes it difficult to follow statistics and data to support evidence-based changes to policy. As a result, IF has yet to receive the public attention, policy focus or research funding that other organ failures such as kidney and liver failure receive.
How can HCPs, patient organisations and policymakers help?1
HCPs are encouraged to conduct research, data collection and effective reporting in the field of IF to improve patient outcomes and standard of care.
Patient voices should be heard in clinical research into IF.
Policymakers should stimulate the innovative research sector by providing funding and supporting the regulatory incentives framework for research in rare diseases such as IF.
Unmet need 6
There is a lack of accredited reference centres.1
Management of IF is complex. Treatment may require the coordinated efforts of an multidisciplinary team (MDT) and a comprehensive care plan.10
A centralised provider of specialist IF services can make significant improvements in efficiency that directly results in improved patient outcomes.10
There is also a need for accredited or recognised centres of excellence to drive patient outcomes.
How can HCPs, patient organisations and policymakers help?1
HCPs should work in expert multidisciplinary teams with a comprehensive care plan for IF patients.
HCPs should register centres of excellence on Orphanet.
Patients can engage with European Patient Advocacy Groups (ePAGs) to increase patient representation and voice in European Reference Networks such as ERN-ERNICA.
Policymakers should share best practices and facilitate engagement (and funding) in expert reference centres (e.g. Orphanet) and European Reference Networks, such as ERN-ERNICA.
Policymakers should ensure expert reference centres are registered on Orphanet.
You can support our work by sharing our dashboards, resources and raising awareness of IF.
SCHNEIDER, S. ET AL. (2017). ATLAS – Transforming the vision – Giving chronic intestinal failure patients the care they need – a call to action. Shire International.
SCHIEPPATI, A. ET AL. (2008). Why rare diseases are an important medical and social issue. Lancet. 371(9629). 2039–2041.
JEPPESEN, P. (2013). Short bowel syndrome – characterization of an orphan condition with many phenotypes. Expert Opinion on Orphan Drugs. 1(7). 569–580.
WINKLER, M. ET AL. (2014). Clinical, social, and economic impacts of home parenteral nutrition dependence in short bowel syndrome. Journal of Parenteral and Enteral Nutrition. 38(1 Suppl), 32S–37S.
PIRONI, L. ET AL. (2016). ESPEN guidelines on chronic intestinal failure in adults. Clinical Nutrition. 35. 247-307.
The site uses cookies to provide you with a more responsive and personalised service. By using this site you agree to our use of cookies as set out in our privacy notice. Please read our privacy notice for more information on the cookies we use and how to delete or block the use of cookies.
