1868P - Challenges for shared decision making in incurable cancer, with a focus on health literacy

Background

Patients with incurable cancer often face difficult decisions about their care. Shared decision making (SDM) can help people make the decisions that are right for them, by supporting understanding and ensuring their priorities are considered. Essential for this is health literacy (HL) - the personal competencies and situational resources needed for people to process information to make decisions. This study sought to understand the barriers to SDM in the context of HL from the perspective of patients and clinicians, and consider how they may be overcome.

Methods

This mixed methods study comprised: 1) semi-structured interviews with patients with incurable cancer and suspected HL difficulties, identified by clinicians from 2 district hospitals; and 2) an online survey of NHS healthcare professionals caring for patients with incurable cancer. Interview data were analysed using the Framework Approach to identify important and recurrent themes. For the survey, a descriptive analysis was carried out for the quantitative data, and thematic analysis for the qualitative data.

Results

Twenty-one interviews were conducted. Patients had a range of diagnoses and had received various treatments. Themes related to experiences (supportive staff in an imperfect system, additional pressure from COVID-19, in the expert’s hands, treatment not so bad) and barriers to SDM (emotional hurdles, accessing and understanding information, wanting to be a good patient). Survey participants (N=70) included doctors, nurses, and a pharmacist. Views towards SDM ranged from those who aim to ‘always’ use it, to those who feel its use should be limited. Patient, clinician, and situational barriers were identified. Key challenges for SDM include the persistence of paternalistic clinician-patient roles, dealing with emotional hurdles, and practical issues.

Conclusions

There are socio-cultural, emotional and system barriers to SDM in incurable cancer for those with HL difficulties. Addressing this combination of issues will be important to fully embed its use in practice. Recommendations to improve SDM range from large scale policy changes to provision of easily accessible and understandable patient information and decision aids in a variety of formats.

Clinical trial identification

Editorial acknowledgement

Legal entity responsible for the study

University of Southampton.

Funding

Robert White Legacy Fund.

Disclosure

All authors have declared no conflicts of interest.