Childhood Interstitial Lung Disease PPI Consultation: Collecting the needs and experiences of an ultra-rare paediatric respiratory condition

This rare disease consultation is the first opportunity to provide a patient’s voice of the needs and wants of those affected with childhood Interstitial Lung Disease (chILD). We explored areas of service provision, digital technology, transition to adult services and building the "ideal" chILD service.

Carlee Gilbert, Institute of Population Health

For service provision, key themes include improving diagnosis, access to treatment and specialist care, along with improved communication and co-ordination between healthcare professionals and support services. This includes access to chILD specific education and resources for healthcare professionals and families. There is an openness towards integrating digital technology and data sharing into chILD healthcare to support these changes.

Exploring adult transition, education and communication is key to a successful transition process. A person-centred approach is recommended, along with allowing continued parent advocacy if required. There are concerns that adult healthcare professionals may not understand chILD conditions and accessing other healthcare services is highlighted to be very different to paediatric care, which may impact on physical and mental well-being.

The activity of designing an “ideal” chILD-specific service indicated a preference for highly specialised funding.

This came in the form of a chILD-specific Centre of Excellence. To continue with supporting this patient's voice, we recommended to continue with chILD engagement of patients, family members and patient organisations.

For any future consultations, we will plan to include healthcare professionals and researchers. This will provide a fuller picture of chILD healthcare services across the UK and enable further discussion in addressing those needs and wants for continued quality care.