Real life practice of sweat testing in Europe

Area of Science:

• Medical Diagnostics
• Pulmonology
• Genetics

Background:

• Sweat testing is a cornerstone for diagnosing cystic fibrosis (CF), particularly after newborn bloodspot screening (NBS).
• Maintaining effective sweat testing services faces challenges, including decreased referrals, younger patient populations, and outdated equipment.
• The European Cystic Fibrosis Society (ECFS) Diagnostic Network Working Group surveyed current practices across Europe.

Purpose of the Study:

• To define and analyze current sweat testing practices across European cystic fibrosis centers.
• To identify variations in sweat testing procedures and adherence to existing guidelines.
• To understand the challenges impacting the provision and reimbursement of sweat testing services.

Main Methods:

• A comprehensive survey was distributed to 136 European respondents representing CF centers or laboratories.
• Data collected included details on sweat collection, analysis, and interpretation of results.
• Respondents were from diverse regions, with 65% operating in areas with established NBS programs.

Main Results:

• Significant variability in sweat testing practices was observed across Europe, often inconsistent with evidence-based guidelines.
• Collection of sweat from two sites, a recommendation in US guidelines, was rarely reported in European centers.
• Discrepancies in cut-off values for positive and intermediate tests were noted, and cost/reimbursement emerged as a significant issue.

Conclusions:

• Current European sweat testing practices exhibit considerable heterogeneity and deviations from guidelines.
• Addressing practice variations, standardizing protocols, and resolving reimbursement issues are essential for sustaining high-quality sweat testing services.
• This research will inform the development of improved best practice guidelines and resources to enhance CF diagnosis across Europe.