{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,1]],"date-time":"2026-07-01T08:20:11Z","timestamp":1782894011957,"version":"3.54.5"},"reference-count":0,"publisher":"Oxford University Press (OUP)","license":[{"start":{"date-parts":[[2026,6,30]],"date-time":"2026-06-30T00:00:00Z","timestamp":1782777600000},"content-version":"am","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>BACKGROUND<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>OBJECTIVES<\/jats:title>\n                    <jats:p>To develop a pragmatic, needs-based tool to facilitate timely identification of ILD outpatients who may benefit from palliative care referral.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>METHODS<\/jats:title>\n                    <jats:p>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\u2019s language, layout, and usability. Findings from all phases informed iterative development of the Palliative Care referral Tool for ILD (PaCT-ILD).<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>MEASUREMENTS AND MAIN RESULTS<\/jats:title>\n                    <jats:p>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 (\u201cstrongly recommend referral\u201d, \u201cconsider referral\u201d, \u201chold off referral\u201d), including space to document reasons for non-referral and prompts to revisit palliative care at future visits.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>CONCLUSIONS<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1093\/annalsats\/aaoag181","type":"journal-article","created":{"date-parts":[[2026,7,1]],"date-time":"2026-07-01T06:18:56Z","timestamp":1782886736000},"source":"Crossref","is-referenced-by-count":0,"title":["Co-designing a Palliative Care Referral Tool for Patients with Fibrosing Interstitial Lung Disease"],"prefix":"10.1093","author":[{"given":"Kah Yee","family":"Tham","sequence":"first","affiliation":[{"name":"Royal Prince Alfred Hospital Department of Respiratory and Sleep Medicine, , Sydney,","place":["Australia"]},{"name":"Changi General Hospital Department of Respiratory & Critical Care Medicine, ,","place":["Singapore"]},{"name":"Centre of Research Excellence in Pulmonary Fibrosis ,","place":["Australia"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mymy","family":"Tran","sequence":"additional","affiliation":[{"name":"Royal Prince Alfred Hospital Department of Respiratory and Sleep Medicine, , Sydney,","place":["Australia"]},{"name":"Centre of Research Excellence in Pulmonary Fibrosis ,","place":["Australia"]},{"name":"The University of Sydney Faculty of Medicine and Health, ,","place":["Australia"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Susanne E","family":"Webster","sequence":"additional","affiliation":[{"name":"Royal Prince Alfred Hospital Department of Respiratory and Sleep Medicine, , Sydney,","place":["Australia"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Caitlin","family":"Fermoyle","sequence":"additional","affiliation":[{"name":"Royal Prince Alfred Hospital Department of Respiratory and Sleep Medicine, , Sydney,","place":["Australia"]},{"name":"Centre of Research Excellence in Pulmonary Fibrosis ,","place":["Australia"]},{"name":"The University of Sydney Faculty of Medicine and Health, ,","place":["Australia"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Allison","family":"Jaur\u00e9","sequence":"additional","affiliation":[{"name":"The University of Sydney Sydney School of Public Health, ,","place":["Australia"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Chandana","family":"Guha","sequence":"additional","affiliation":[{"name":"The University of Sydney Sydney School of Public Health, ,","place":["Australia"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Alison J","family":"Hey-Cunningham","sequence":"additional","affiliation":[{"name":"Centre of Research Excellence in Pulmonary Fibrosis ,","place":["Australia"]},{"name":"The University of Sydney Faculty of Medicine and Health, ,","place":["Australia"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kerri A","family":"Johannson","sequence":"additional","affiliation":[{"name":"University of Calgary Department of Medicine, , Calgary, AB,","place":["Canada"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"John","family":"Mackintosh","sequence":"additional","affiliation":[{"name":"The Prince Charles Hospital Department of Thoracic Medicine, , Chermside, Queensland,","place":["Australia"]},{"name":"University of Queensland Faculty of Medicine, , Brisbane, Queensland,","place":["Australia"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Elizabeth M","family":"Veitch","sequence":"additional","affiliation":[{"name":"Concord Hospital Respiratory and Sleep Medicine Department, , New South Wales,","place":["Australia"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jack","family":"Callum","sequence":"additional","affiliation":[{"name":"The University of Sydney Faculty of Medicine and Health, ,","place":["Australia"]},{"name":"Homerton University Hospital NHS Foundation Trust Respiratory Medicine, ,","place":["United Kingdom"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Gin Tsen","family":"Chai","sequence":"additional","affiliation":[{"name":"Tan Tock Seng Hospital Department of Respiratory and Critical Care Medicine, ,","place":["Singapore"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Diego","family":"Castillo","sequence":"additional","affiliation":[{"name":"Hospital de la Santa Creu I Sant Pau Rare Diseases Unit. Respiratory Medicine Department, , Barcelona,","place":["Spain"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marlies","family":"Wijsenbeek","sequence":"additional","affiliation":[{"name":"Erasmus University Medical Centre Erasmus MC Centre of Expertise for Interstitial Lung Diseases and Sarcoidosis, , Rotterdam, The","place":["Netherlands"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Michael","family":"Kreuter","sequence":"additional","affiliation":[{"name":"Mainz University Medical Center, and of Pulmonary Mainz Center for Pulmonary Medicine, Department of Pneumology, , Critical Care, and Sleep Medicine, Marienhaus Clinic Mainz, Mainz,","place":["Germany"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anthoulla","family":"Mohamudally","sequence":"additional","affiliation":[{"name":"Royal Prince Alfred Hospital Department of Respiratory and Sleep Medicine, , Sydney,","place":["Australia"]},{"name":"The University of Sydney Faculty of Medicine and Health, ,","place":["Australia"]},{"name":"Royal Prince Alfred Hospital Department of Palliative and Supportive Care, , Sydney,","place":["Australia"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Tamera J","family":"Corte","sequence":"additional","affiliation":[{"name":"Royal Prince Alfred Hospital Department of Respiratory and Sleep Medicine, , Sydney,","place":["Australia"]},{"name":"The University of Sydney Faculty of Medicine and Health, ,","place":["Australia"]}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"286","published-online":{"date-parts":[[2026,6,30]]},"container-title":["Annals of the American Thoracic Society"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/academic.oup.com\/annalsats\/advance-article-pdf\/doi\/10.1093\/annalsats\/aaoag181\/68652054\/aaoag181.pdf","content-type":"application\/pdf","content-version":"am","intended-application":"syndication"},{"URL":"https:\/\/academic.oup.com\/annalsats\/advance-article-pdf\/doi\/10.1093\/annalsats\/aaoag181\/68652054\/aaoag181.pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,7,1]],"date-time":"2026-07-01T06:18:56Z","timestamp":1782886736000},"score":1,"resource":{"primary":{"URL":"https:\/\/academic.oup.com\/annalsats\/advance-article\/doi\/10.1093\/annalsats\/aaoag181\/8722138"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,6,30]]},"references-count":0,"URL":"https:\/\/doi.org\/10.1093\/annalsats\/aaoag181","relation":{},"ISSN":["2325-6621"],"issn-type":[{"value":"2325-6621","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,6,30]]},"article-number":"aaoag181"}}