Developing and Implementing an Advance Care Planning Service for Patients with Haematological Malignancies Preparing to Undergo CAR-T Therapy

Background: Advance care planning is frequently overlooked in the field of haematological malignancies (LeBlanc TW, 2017). It is a challenging specialism in which transition from curative to end of life can be rapid (Moreno-Alonso D et al., 2018). An exploratory study conducted by the primary author proposed that advance care planning is essential not only for patients with a terminal diagnosis, but also patients undergoing potentially curative treatment carrying a significant mortality risk. Chimeric antigen receptor T-cell (CAR-T) therapy is an emerging and complex treatment carrying significant risks including cytokine release syndrome, neurotoxicity, infections and death (NHS England, CAR-T therapy, https://www.england.nhs.uk/cancer/cdf/car-t-therapy/). Survival at 2 years is estimated at 40% however knowledge around post-procedure survivability and long term effects is limited (Kansagra AJ et al., 2018). Risks during and post procedure support the need for pre-procedure advance care planning.

Aims: The main aim was to ensure all patients are offered advance care planning prior to undergoing CAR-T therapy. There was no robust process in place for advance care planning in CAR-T prior to this project. The focus was to provide a personalised, responsive service aimed at improving patient experience. Further aims included widening access to advance care planning in haematology, improving staff education thus empowering staff to have advance care planning discussions, promote collaborative working with regards to advance care planning and increase the likelihood that patients would die in their preferred place of death.

Methods: After thorough literature review, a single centre exploratory study was undertaken on perceived barriers and facilitators to advance care planning in haematological malignancies from a staff perspective. A questionnaire was sent to a broad range of clinical staff with the potential to be involved in advance care planning discussions including Consultant Haematologists, Registrars, Speciality Doctors, Nurse Specialists, Physician Associates and Advanced Clinical Practitioners. Following evaluation and completion of recommendations, development of a new pre CAR-T therapy advance care planning clinic was commenced. A clinic template and patient evaluation tool was developed (June-July 2021), and a new clinic aligned to the CAR-T referral pathway was implemented (July 2021 onwards). All patients referred for CAR-T therapy were offered attendance at this clinic, providing a designated opportunity for holistic advanced care planning. Evaluation is ongoing and updated results will be presented at the meeting.

Results: Of patients referred, 100% accepted an appointment within the new service, representing a 1500% increase in patients undertaking advance care planning prior to CAR-T therapy. Patient satisfaction surveys indicated 100% had an improved understanding of advance care planning; 100% would recommend the clinic and 100% felt the service was of value. The wider clinical team including medics, nurse specialists, nurses and healthcare support workers are now shadowing the service for educational development. The service is now being expanded to the sub-specialisms of myeloid and BMT. The service has been shortlisted for two British national nursing awards.

Conclusions: Advance care planning can occur at any point in the disease trajectory. If it took place pre-treatment, covering all possible outcomes, individuals may be better prepared for the 'worst case scenario'. This service has had 100% positive feedback. It has the potential to increase the utilisation of advance care planning within CAR-T and more widely in the field of haematology and across other specialisms. The results indicate that the clinic has improved continuity and helped to provide patient focussed care (Evans C et al., 2020). Education of and further support from palliative care specialists would be beneficial in the field of CAR-T therapy.

Parrish:BMS/Celgene: Consultancy, Speakers Bureau; Sanofi: Consultancy, Speakers Bureau; Abbvie: Consultancy, Speakers Bureau; Everything Genetic: Consultancy; Janssen: Speakers Bureau; Jazz: Speakers Bureau; Takeda: Honoraria, Speakers Bureau; Novartis: Honoraria; Gilead: Honoraria. Seymour:Janssen: Speakers Bureau; Novartis: Other: conference support, Speakers Bureau; Celgene: Other: conference support; Takeda: Membership on an entity's Board of Directors or advisory committees; Kite Gilead: Other: conference support, Speakers Bureau. Cook:Amgen: Consultancy; Sanofi: Consultancy; BMS/Celgene: Consultancy, Research Funding; Janssen: Consultancy, Research Funding; Karyopharm: Consultancy; Takeda: Consultancy, Research Funding.