Cystic Fibrosis in Children

Advances in screening, diagnosis, and targeted therapies have transformed outcomes for many children with Cystic Fibrosis in Children, yet day-to-day life still involves complex treatment routines, frequent monitoring, and careful coordination between families and multidisciplinary teams. This session explores how pediatric services can deliver high-quality, family-centred care across the care continuum—from newborn screening and diagnostic confirmation to disease-modifying therapies, nutritional support, and preparation for transition to adult services. Participants will examine how to integrate pulmonary, gastrointestinal, endocrine, and psychosocial care in a way that is manageable for families and sustainable for teams.

Clinicians and allied professionals increasingly seek Pediatrics Conference that provide practical guidance on applying guidelines in real-world settings. In this session, attendees will explore contemporary approaches to airway clearance techniques, inhaled therapies, infection prevention and control, and the use of CFTR modulators. Discussions will highlight how to interpret lung function trends, manage pulmonary exacerbations, and optimise growth and nutrition in childhood and adolescence. The importance of early, proactive management of complications such as CF-related diabetes, liver disease, bone health issues, and sinus disease is woven throughout.

A central theme is the design of resilient pediatric cystic fibrosis care pathways that support adherence, minimise treatment burden, and respond flexibly to the changing needs of families over time. Case examples will illustrate how to address challenges such as treatment fatigue, school disruption, mental health difficulties, and the impact of chronic infection on family life. Participants will consider how to organise multidisciplinary clinics, use telehealth for remote monitoring, and coordinate with local services to reduce travel while maintaining high standards of care. Strategies for supporting siblings, caregivers, and school teams are also discussed.

The session will additionally explore issues of equity, ethics, and global variation, including access to newborn screening, specialist centres, advanced therapies, and transplant pathways. Attendees will reflect on how to communicate about prognosis in the era of transformative treatments, how to navigate decisions around clinical trials, and how to support adolescents and young adults in planning education, careers, and family life. By the end, participants will have updated knowledge and practical tools to enhance the everyday care experience for children living with cystic fibrosis and the people who support them.

Core Themes in Cystic Fibrosis in Children

Early detection and diagnosis

  • Understanding newborn screening protocols, sweat testing, and genetic confirmation to establish diagnosis promptly and accurately.
  • Recognising atypical or late-presenting cases and ensuring families receive clear explanations of results and implications.

Multisystem clinical management

  • Coordinating respiratory, nutritional, endocrine, and gastrointestinal care so children receive integrated, not fragmented, treatment.
  • Monitoring for complications such as CF-related diabetes, liver disease, and bone health issues with structured surveillance.

Treatment adherence and burden

  • Exploring how daily physiotherapy, nebulisers, medications, and clinic visits affect routines, school participation, and family life.
  • Working with families to simplify regimens where possible and co-design realistic plans that they can sustain over time.

Psychosocial support and quality of life

  • Addressing anxiety, low mood, and social isolation in children, siblings, and caregivers as part of routine CF care.
  • Linking families with psychological services, peer networks, and community resources that foster resilience and hope.

Practice Insights and Service Strategies

Designing multidisciplinary CF clinics
Bringing together respiratory clinicians, dietitians, physiotherapists, psychologists, nurses, and social workers in coordinated visits.

Using telehealth and remote monitoring
Incorporating virtual reviews, home spirometry, and digital symptom tracking while maintaining strong therapeutic relationships.

Supporting school and community participation
Collaborating with schools to manage infection risk, treatment schedules, and physical activity in inclusive ways.

Planning transition to adult services
Preparing adolescents gradually for adult care through education, shared visits, and increasing responsibility for self-management.

Ensuring infection prevention and control
Applying evidence-based strategies to minimise cross-infection in clinics, wards, and community settings.

 

Addressing global disparities in access
Advocating for equitable access to diagnostics, essential therapies, and emerging disease-modifying treatments.

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