P129 IKEN-ILD: involvement, knowledge, engagement in interstitial lung disease (ILD) – a novel patient passport

Background
The cause of a patient’s interstitial lung disease (ILD) may be challenging for clinicians to identify and diagnose and for patients to understand. ILD care necessarily demands multi-professional involvement of doctors, specialist nurses, physiotherapists, palliative care specialists, psychologists, pharmacists and dieticians. The complexity of diagnosis, treatment decisions and the breadth of clinical interactions means patients often have significant and rapidly changing information needs. Local patient advocacy groups raise this as a critical unmet need. They have requested clearer care plans, improved communication between professionals, and a recurring question of ‘how do I manage my pulmonary fibrosis today?’.

Aims
To co-design a patient passport to improve communication and care for patients with ILD. Our conceptual framework includes patient involvement, better understanding of diagnosis and management, and shared more visible communications with professionals.

Methods
Co-design evolved over several meetings with clinicians and patient advocacy groups. An initial draft document underwent several iterations in response to wider patient feedback. The emerging passport was intended to be a live document, held and maintained by the patient. A questionnaire was simultaneously created, both online and in paper format, composed of 10 key co-developed questions to evaluate the value of the patient-passport.

Results
The development of a new patient-passport, ‘IKEN-ILD: Involvement-Knowledge-ENgagement in ILD’, including sections on the working-diagnosis, investigations, treatments, symptom management and anticipatory care planning. Section headings use simple, non-technical language capturing the patient‘s perspective (eg. ‘My treatments’, ‘My wishes’, ‘My future’). The pilot passport and questionnaire are now being rolled out to our local ILD community. Responses will shape any future iterations.