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.

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Journal
Journal of Paediatrics and Child Health
Published
2026-05-31
DOI
https://doi.org/10.1111/jpc.70447
Primary Topic
Lipoproteins and Cardiovascular Health
Type
article
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article

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

Jacquie Garton‐Smith, Shubha Srinivasan, Jenny Della-Vedova, Andrew Martin et al.
Journal of Paediatrics and Child Health
Lipoproteins and Cardiovascular Health
article

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

Jacquie Garton‐Smith, Shubha Srinivasan, Jenny Della-Vedova, Andrew Martin, Ari Horton, Jing Pang, Kristen J. Nowak, Mitchell Sarkies, Gerald F. Watts, Christine Tawtel
article en

Abstract

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.

Journal of Paediatrics and Child Health
The University of Sydney (AU), The University of Western Australia (AU), Sydney Adventist Hospital (AU), Royal Perth Hospital (AU), Princess Margaret Hospital for Children (AU), Government of Western Australia Department of Health (AU), Children's Hospital at Westmead (AU), Monash Children’s Hospital (AU), Department of Culture and the Arts (AU), North Metropolitan Health Service (AU), Australian Centre for Heart Health (AU), Monash University (AU)
Openalex Percentile: Top 4%
Lipoproteins and Cardiovascular Health
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