Co-Design of Strategies to Support the Implementation of a Paediatric Risk-Reduction Pathway for Familial Hypercholesterolaemia.

OBJECTIVES

Familial hypercholesterolaemia (FH) affects 1 in 311 people. Left untreated, it elevates LDL-cholesterol from early life and drives premature atherosclerotic cardiovascular disease. Despite paediatric guidelines for early lipid-lowering, detection and management in Australia remain suboptimal. Shared-care models across general practice, paediatrics, and FH-specialist services are promising but under-implemented. We co-developed implementation strategies to support a paediatric FH risk-reduction pathway.

METHODS

Two qualitative focus-group workshops with clinical, policy and advocacy stakeholders were conducted. Transcripts underwent inductive and deductive thematic analysis. Barriers and facilitators were mapped to the Consolidated Framework for Implementation Research and strategies to the Expert Recommendations for Implementing Change, with structured specification of actor, action, target, temporality and dose.

RESULTS

Barriers included unclear responsibility across settings, limited clinician confidence, constrained access to specialist dietary advice and treatment non-adherence. Facilitators included patient/family empowerment, existing financial reimbursement and engaged clinical champions. Nine strategies emerged: (1) treatment-guidance letters; (2) coordination and phone support; (3) individualised patient passports; (4) financial reimbursement; (5) diet and lifestyle resources; (6) patient and family engagement; (7) decision support systems; (8) audit and feedback; and (9) development of clinical champions.

CONCLUSIONS

A co-designed suite of nine strategies could enable shared-care for paediatric FH in Australia. This structured, replicable package is adaptable across jurisdictions and can support earlier detection and improved management. Evaluation of effectiveness and scalability in routine care is warranted, with potential relevance to other paediatric lipid disorders.