Home parenteral nutrition (HPN) is a vital therapeutic lifeline provided via intravenous infusion for adults and paediatric patients, who are unable to obtain sufficient nutrients orally or through enteral nutrition due to conditions such as chronic intestinal failure (benign or malignant diseases), short bowel syndrome, or other gastrointestinal disorders (pre or post surgeries etc). The proven benefits of HPN programme are improved clinical outcomes[1] and enhanced quality of life,[2] as well as reduced hospital stays.[3]
The programme includes several essential components such as: patient-specific or standard-formula parenteral nutrition bags, medications, all devices needed for the treatment, including medical devices, ancillary materials for safe administration, nursing training, follow-up monitoring, home deliveries, and more. Ensuring the quality and safety of each component involves collaboration among industry partners, physicians, nurses, patients, and their families. This high-quality integrated model supports thorough care for patients from the time they are diagnosed to when they receive treatment at home.
Unequal access in Europe
Across Europe, access to HPN varies significantly, posing challenges for patients and their carers. In this article, MNI lists the main barriers and challenges faced by patients and their families, and potential strategies to enhance access and improve quality of care.
Access to HPN services in Europe is divers[4], influenced by factors such as healthcare infrastructure, funding mechanisms, regulatory frameworks and diverse adoptions of HPN guidelines published by medical societies. While some countries have well-established HPN programmes with dedicated multidisciplinary teams, others may lack specialised centres or encounter obstacles in reimbursing and funding HPN supplies and services.
In countries such as France, Germany and Belgium, HPN services are relatively advanced, with established centres of excellence offering comprehensive care, including patient education, nutritional assessment, and continuous support. However, even in these countries, disparities in access may arise due to geographical location or healthcare providers capacity.
On the other hand, patients in countries with limited resources or less developed healthcare systems – such as Bulgaria, Romania, Greece, and other Eastern European nations – may struggle to access HPN altogether. This can result in disparities in health outcomes and quality of life, as patients may experience delays in starting therapy or inadequate support for managing HPN at home.
Challenges due to the variability in HPN access across Europe:
1. Healthcare Infrastructure: Disparities in healthcare infrastructure, including availability of specialised centres and trained healthcare professionals limit access to HPN services.
2. Reimbursement and Funding: Inconsistent reimbursement policies and funding mechanisms create barriers for patients, leading to delays or denials of coverage for essential supplies and services.
3. Patient Empowerment and Support: Effective management of HPN requires comprehensive patient education, ongoing support from multidisciplinary teams, and resources for patient self-management.
4. Guidelines Adoption: Some countries face challenges with inconsistent adoption and execution of HPN guidelines published by the scientific medical community.
5. Essential Quality Service Levels: Lack of identification and implementation of minimum quality and safety standards that are guaranteed to all patients.
Strategies for Improvement
Addressing the challenges associated with HPN access in Europe requires a comprehensive, multi-stakeholder approach involving healthcare professionals, policymakers, and patient advocacy groups. The key strategies include:
1. Consistent implementation of Standardised Guidelines: improve adherence to HPN Guidelines (e.g. ESPEN) and developing standardised protocols for HPN management, including prescribing practices, patient education, and follow-up care.
2. Healthcare Integration: Integrate HPN services into existing healthcare systems and create dedicated HPN pathways from hospital to home. This must be accompanied by the promotion of the collaboration between primary care providers, specialists, and community services, enhancing access and improving care coordination for patients.
3. Reimbursement Framework: Adopt a fair and transparent reimbursement policies for HPN supplies and services to ensure equitable access for all patients, regardless of their financial status or geographic location.
4. Patient Empowerment: Empower patients and their caregivers through education, self-management tools, and peer support networks to enhance adherence to HPN therapy, leading to improved outcomes and quality of life.
5. Essential Level of Assistance: Collaborate with healthcare stakeholders, policymakers, and patient advocacy groups to define a common essential level of assistance. This standard should address quality, appropriateness, and safety for each component of the HPN programme ensuring it can be applied consistently across all EU Member States and remain accessible to all patients.
6. Cross-border Collaboration: Facilitating knowledge sharing and best practices among EU Member States to harmonize HPN standards and improve access across the continent.
The great ambition is that every European citizen in need of HPN, be it with chronic intestinal insufficiency, undergoing cancer treatment, or parents of a child requiring nutritional intervention, can receive timely access to a quality home parenteral nutrition programme. This programme should be run with complete safety and guarantee equal treatment for everyone, regardless of their location.
[1] PCE-Nutrition & Pancreatic Cancer” Nov 2022 – chapter 07 – Home Parenteral Nutrition
[2] PCE-Nutrition & Pancreatic Cancer” Nov 2022 – chapter 07 – Home Parenteral Nutrition
[3] PCE-Nutrition & Pancreatic Cancer” Nov 2022 – chapter 07 – Home Parenteral Nutrition
