Background APC is associated with a poor prognosis: <1 year. Honest prognosis discussions guide early CPCS input, facilitating timely advance care planning.

Method Retrospective analysis of consecutive case-notes of patients (APC) seen in hepatobiliary new patient clinic (The Christie (December 2012-February 2019)). Primary objective: assess if patients were given opportunity to discuss prognosis. Secondary objective: determine if patients were referred to CPCS. Chi-squared test assessed association between prognosis discussion and CPCS referral with professional completing the initial new patient consultation clinical outcome (COG) form, and if clinical nurse specialist (CNS) review was associated with CPCS referral.

Results 703 case-notes were reviewed; 608 eligible (APC histological (93.9%) or radiological diagnosis); 207 patients (34.0%) seen by CNS at first appointment. Prognosis discussions occurred at any time-point in treatment pathway in 365 (60%). Just over half had a prognosis discussion during first appointment (330, 54.4%). A reason for no prognosis discussion was documented in 112 (40.5%); most common: patient wishes (98, 35.4%). There was significant association between frequency of prognosis discussions at first clinic appointment and professional completing COG form (greatest if seen by nurse clinician (frequency 81.5%)) (p<0.001). 171 patients (28.1%) were known to CPCS at first appointment. Of those not known, 171 (39.1%) and 143 (32.7%) were referred at this initial time-point and later, respectively. There was a significant association between referral to CPCS at first clinic appointment and professional completing COG form (greatest for nurse clinician (frequency 65.2%)) (p<0.001), and also if reviewed by CNS at first visit, or not (47.8% vs 35.6%) (p<0.01).

Conclusions Prognosis discussions occurred in ~2/3 of cases; associated with professional completing COG form (best for nurse clinician), as was referral to CPCS. CNS review increased referral to CPCS at initial visit. Revisiting prognosis discussions and greater attention to its documentation during patient’s pathway is recommended.