Co-designing a Palliative Care Referral Tool for Patients with Fibrosing Interstitial Lung Disease

BACKGROUND: Patients with fibrosing interstitial lung disease (ILD) experience symptoms such as dyspnea, cough, and fatigue that impair quality of life. While palliative care can improve outcomes, timely referral to palliative care remains challenging due to prognostic uncertainty, variable practice, and the absence of standardized referral criteria. No consensus referral tool currently exists for fibrosing ILD. OBJECTIVES: To develop a pragmatic, needs-based tool to facilitate timely identification of ILD outpatients who may benefit from palliative care referral. METHODS: A multi-method study, guided by the Double Diamond framework and Experience-Based Co-Design principles, was conducted in three phases. In Phase 1, a targeted literature review identified 10 referral domains and 44 candidate indicators, which informed an international survey in which healthcare professionals ranked domains and rated indicators using a 5-point Likert scale. In Phase 2, semi-structured interviews with ILD experts explored referral practices, perceived utility of a referral tool, and implementation challenges. In Phase 3, co-design workshops with patients, caregivers, and clinicians, together with expert feedback meetings, prioritized referral triggers and refined the tool's language, layout, and usability. Findings from all phases informed iterative development of the Palliative Care referral Tool for ILD (PaCT-ILD). MEASUREMENTS AND MAIN RESULTS: The survey received 117 responses from 15 countries. Distressing symptoms, worsening quality of life, psychosocial distress, patient or caregiver request, recurrent hospitalizations, increasing care needs, and limited life expectancy were prioritized over co-morbidities and formal health-related quality-of-life instruments. Eleven ILD experts contributed interviews, generating eight themes on referral timing, clinical triggers, stigma, relational trust, and system-level barriers. Workshops confirmed the salience of symptom and needs-based triggers and led to refinements in wording and layout. The final PaCT-ILD is a one-page clinician-facing tool with five priority domains and three recommendation thresholds ("strongly recommend referral", "consider referral", "hold off referral"), including space to document reasons for non-referral and prompts to revisit palliative care at future visits. CONCLUSIONS: PaCT-ILD is a co-designed, needs-based referral aid that reflects real-world decision-making in ILD and offers a structured framework to support earlier, more consistent palliative care referral. Further evaluation is required to assess feasibility, acceptability, and impact on clinical outcomes.