Quality standards for the diagnosis and management of ATTR and AL amyloidosis: a nominal group technique study.

BACKGROUND

Transthyretin (ATTR) and immunoglobulin light-chain (AL) amyloidosis are progressive conditions that can have debilitating effects on people. Delayed diagnosis and variable access to high-quality care continue to affect quality of life and prognosis. Clear and ambitious quality standards could drive consistent care and improve outcomes.

METHODS

A modified nominal group technique was used to develop consensus-based quality standards for the diagnosis and management of ATTR and AL amyloidosis. Eighteen experts participated, including patient representatives and clinicians from high-income, publicly funded health systems in Europe and Canada. Each quality standard was paired with at least one measurable indicator to support implementation and monitoring.

RESULTS

A total of 29 provisional statements were generated, with consensus achieved on eight quality standards. These span the full care pathway and emphasise the need for timely, person-centred and interdisciplinary care. Twenty accompanying indicators were developed.

CONCLUSION

This is the first comprehensive set of consensus-based quality standards for ATTR and AL amyloidosis care. They provide a practical and aspirational framework to guide quality improvement across health systems. Adoption of these standards could improve early diagnosis, equitable access to treatment, and quality of life. Future research may explore their feasibility and adaptation for other health system settings.