Integrating Lynch syndrome management into routine cancer pathways: a lifespan-oriented approach to patient-centred care and shared decision-making

Abstract

Abstract Background Lynch syndrome is one of the most common inherited cancer predispositions. Widespread implementation of tumour-based screening and increased awareness and availability of germline genetic testing has substantially increased identification of individuals with Lynch syndrome. They are presented with complex, personal decisions about cancer surveillance, targeted treatments such as immunotherapy and prevention strategies throughout the lifespan. However, fragmented service delivery and variable integration of genetics into routine cancer care pathways present significant challenges to optimal management. Aim This review examines the challenges of integrating genetic testing and Lynch syndrome management into routine cancer care pathways. Recommendations for a patient-centred, lifespan-oriented framework informed by clinical evidence and lived experience are proposed. Methods Clinical, research and policy evidence was synthesised alongside insights from patient and public involvement. Three patient advocate co-authors contributed narratives from their lived experience and broader perspectives informed by engagement with international patient and advocacy networks. Key findings Mainstreaming genetic testing within oncology enables timely diagnosis and treatment stratification but remains inconsistently implemented due to system-level barriers, workforce capacity, evolving guidelines and fragmented communication. Suboptimal coordination adversely affects cascade testing, surveillance uptake and patient experience, with potential to exacerbate health inequities. Integration of molecular pathology, precision oncology, clinical genetics, peer support and psychosocial care is essential to translate advances in tumour profiling and immunotherapy into sustained benefits for patients and families. Lived experience insights highlight the importance of clear clinical ownership, longitudinal follow-up, shared decision-making and psychosocial support across the lifespan. Recommendations We propose an integrated, lifespan-oriented framework incorporating centralised coordination, interoperable digital tools, joined-up cross-specialty guidelines, education, proactive genetic and psychosocial counselling at key life stages, and codesigned care pathways embedded within routine cancer services. Conclusions A patient-centred, lifespan-oriented management approach is essential to optimise cancer prevention, early detection, treatment outcomes and quality of life in Lynch syndrome. Embedding patient and public involvement, education and system integration within cancer pathways provides a scalable model that may inform care delivery for other hereditary cancer predispositions.