gms | German Medical Science

Background: Patient-centred healthcare is respectful and responsive to patients’ needs and preferences. For this to occur, patients must comprehend their disease and treatment options and participate in decision making, to the degree they desire. Inadequate patient involvement may be due to clinicians’ misconceptions of patients’ preferences for information provision and involvement in decision making. Asking patients about their preferences may help ensure that their care meets their wishes. However, to our knowledge, no study has assessed whether not asking patients about their decision-making preferences is associated with discordance between patients’ preferred and perceived involvement in deciding on their cancer treatment.

Objectives: To examine whether not having been asked by their clinicians how involved cancer patients would like to be in their treatment decisions is related to discordance between patients’ preferred and perceived involvement in treatment decision making.

Methods: This was a cross-sectional survey of adult cancer patients who were recruited from five medical and radiation oncology outpatient clinics in Australia. Discordance of patients’ preferred and perceived decision-making roles was assessed via an adapted version of the Control Preferences Scale. Logistic regression modelling was conducted to assess the relationship between role discordance and whether patients were not asked but wanted to be asked about how involved they would like to be in deciding on their treatment.

Results: Seven-hundred-eighty-four eligible patients were approached. Of these, 527 (67%) consented to participate, 423 (54%) returned a completed questionnaire and were included in the analysis. Participants had a mean age of 64 years. Most were female (n=234, 55%). Approximately a third of the cancer patients included in this study were receiving treatment for breast cancer (n=133, 31%) and were diagnosed more than two years ago (n=141, 34%). Sixty-nine percent of study participants (n=293) preferred to make their treatment decisions themselves or in collaboration with their doctor. Almost a third (n=128, 31%) reported discordance between their preferred and perceived involvement in their treatment decisions. Of those, 72% (n=92) were less involved than they would have liked to have been. We found a statistically significant association between discordance of patients’ preferred and perceived involvement and patients reporting not being asked how involved they would like to be in treatment decision making, although they wanted this (p < 0.04; OR: 2.37; 95% CI: 1.07 – 5.20). Patients who reported not being asked how involved they would like to be in treatment decision making, although they wanted this, had significantly higher odds of experiencing care that did not align with their wishes, compared to those patients who reported being asked how involved they wanted to be.

Discussion and conclusion: Most patients in our study preferred playing an active or collaborative role when making decisions regarding their cancer treatment. Although the majority of study participants received care that aligned with their preferences, there is room for improvement. Almost a third of study participants were not as involved in decision making as they wanted to be. Our study results suggest that not asking patients about their preferred involvement in cancer treatment decision making might lead to care that does not align with patients’ wishes. Asking patients about their decision-making preferences could help provide high-quality patient-centred cancer care. This is in line with previous studies which suggest that although not all patients wish to be involved in healthcare decision making, they would like their clinicians to ask them about their preferences and take them into account when making treatment decisions.

Practice implications: Based on our study findings, we suggest that clinicians explore patients’ preferences for how involved they would like to be in their cancer treatment decisions, and tailor care accordingly. Strategies, such as training programmes on patient-centred decision making or the use of decision aids, might improve doctor-patient-communication and help adequately involve cancer patients in their treatment decisions.