OA05.02 Acceptability of Automatic Referrals to Supportive and Palliative Care, by Patients Living with Advanced Lung Cancer: A Co-Design Process

Abstract

People living with advanced lung cancer often experience high symptom burden and emotional distress. Over a decade ago, a randomized controlled trial demonstrated that patients with metastatic non-small cell lung cancer who received early palliative care (PC) lived longer and had significantly improved quality of life and mood. Nevertheless, timely access to supportive and PC services remains a challenge. Barriers to accessing PC services include stigma around PC, and inconsistences in clinician referrals due to competing tasks and varied education, experience, interest, and understanding of palliative care. A proposed solution is to trigger an automatic referral process to PC by pre-determined clinical criteria, without the need for a formal clinician referral. However, patient acceptability of automatic referrals is unknown. To study whether an automatic process is acceptable, our group- Palliative Care Early and Systematic (PaCES), sought to co-design with patients and providers the operational processes and communication pieces for automatic PC referral for patients newly diagnosed with stage IV lung cancer. In Step 1 of this work, nine semi-structured one on one phone interviews were conducted with advanced lung cancer patients on their perspectives on the acceptability of phone contact by a specialist PC provider triggered by an automatic referral process. Interviews were thematically analysed using Sekhon’s Theoretical Framework of Acceptability as a guiding framework for analysis. Step 2: Patient advisors, healthcare providers (oncologists, nurses from oncology and PC, clinical social worker, psychologist), and researchers were invited to join a co-design working group to develop and provide input on the operational and communication processes needed for the automatic referral process. Using the findings from step 1, the group developed the automatic referral process and met biweekly (virtually) over the course of 5 months. From patient interviews, the concept of an automatic referral process and being phoned directly by a PC provider offering a consult was perceived to be acceptable and beneficial for patients with advanced lung cancer. Patients emphasized the need for timely support, access to peer and community resources. Patients also identified important components necessary for the automatic referral process such as the naming of the service, timing of the referral, and information needed from the phone call. Using these findings, the co-design working group identified the eligibility criteria for identifying newly diagnosed stage IV lung cancer patients using the cancer centre electronic health record, co-developed a telephone script for specialist PC providers, a patient handout about supportive care, and handout on supportive care resources. Additionally, interview and survey guides for evaluating the implemented automatic process were refined. A co-design process ensures stakeholders are involved in program development and implementation from the very beginning, to make outputs relevant and acceptable for stage IV lung cancer patients. The next phase of this work will use Sekhon’s Theoretical Framework of Acceptability through mixed-methods to evaluate the acceptability of an automatic referral process from the perspective of the patients called and healthcare providers.