How well are we meeting haematological cancer survivors’ preferences for involvement in treatment decision making?

Abstract: Objective: This study aimed to examine preferred and perceived roles of haematological cancer survivors in treatment decision making. Methods: Participants were within three years of diagnosis and registered with a cancer registry in one Australian state. 732 eligible survivors were invited to complete a paper and pencil survey. Results: 268 survivors completed the survey (37% response rate). The majority of participants (46%) preferred a passive role in decision making. Thirty percent of participants preferred to make the decision in collaboration with the doctor, whereas 26% preferred an active role in decision making. Just over half of respondents (56%) reported an exact match between their preferred and perceived roles. Where discordance between preferred and perceived roles were identified, survivors were more likely to report having been more passively than actively involved compared to their preferred roles. Conclusion: There is considerable variation in haematological cancer survivors’ preferred and perceived roles in treatment decision making. Practice implications: This study highlights the need to improve clinical communication to ensure that patient experiences align with their preferences for involvement in treatment decision making. [Copyright &y& Elsevier]