In pursuit of excellence: an integrated care pathway for C1 inhibitor deficiency

Area of Science:

• Immunology
• Genetics
• Healthcare Management

Background:

• C1 inhibitor (C1INH) deficiency impacts approximately 1500 individuals in the UK, presenting as hereditary or acquired conditions.
• Characterized by unpredictable swellings, C1INH deficiency can be life-threatening (laryngeal involvement) or cause significant morbidity (visceral involvement).
• Recent advancements offer novel treatments for C1INH deficiency, coinciding with NHS financial pressures and structural changes.

Purpose of the Study:

• To introduce an integrated care pathway (ICP) for the management of C1 inhibitor deficiency.
• To disseminate best practices and facilitate multi-disciplinary working for C1INH deficiency patients.
• To explore cost-reduction strategies within the NHS for managing C1INH deficiency.

Main Methods:

• Development and presentation of an integrated care pathway (ICP) for C1 inhibitor deficiency management.
• Utilizing the ICP as a tool for clinical audit and disseminating best practices.
• Focusing on multi-disciplinary team collaboration for patient care.

Main Results:

• The BartsHealth NHS Trust manages one of the largest UK cohorts (133 patients) of C1 inhibitor deficiency.
• The proposed ICP aims to standardize care and improve outcomes for patients with C1INH deficiency.
• The pathway is designed to enhance efficiency and potentially reduce healthcare costs.

Conclusions:

• Integrated care pathways are crucial for managing rare diseases like C1 inhibitor deficiency effectively.
• The presented ICP offers a framework for optimizing patient care and resource utilization in the NHS.
• This approach supports the integration of new treatments within evolving healthcare economic landscapes.