Summary
Introduction
Patients’ perceptions of having had freedom of choice in treatment decision-making are shown to have implications for their quality of life. It is, therefore, important to determine what factors underlie these perceptions. One factor that has been studied is whether or not patients believed that their doctor had offered choice of treatment. However, even when choice is actually offered, patients may still feel that they have no choice. Little attention has been paid to other factors that may contribute to patients’ perceptions of having had no choice. Our purpose was to explore (1) whether early-stage breast cancer patients perceived to have had a choice with regard to adjuvant chemotherapy, and (2) their reasons for having perceived no choice.
Patients and methods
The determinants of no choice that we examined were: (1) (preferred) involvement in treatment decision-making, (2) perceived clinical benefits of chemotherapy (e.g., cure), (3) perceived psychological benefits (e.g., less worries), and (4) perception of being able to cope with the side effects. All predictors, as well as patient and clinical characteristics, were entered simultaneously in a multiple logistic regression analysis and non-significant predictors were removed step-by-step, until only significant predictors (p<0.05) remained. Because determinants may differ between patients with experience of chemotherapy and those without, both treatment groups were analyzed separately.
Results
Four hundred and forty-six patients filled out the questionnaire (62%). Sixty-six percent of patients who had been treated with chemotherapy and 86% of inexperienced patients had perceived no treatment choice. In both treatment groups, patients who preferred a shared role or a passive role in treatment decision-making were statistically significantly more likely to have perceived no treatment choice than patients who preferred an active role. Surprisingly, beliefs about the clinical and psychological benefits of chemotherapy did not influence patients’ perceptions of having had choice of treatment.
Conclusion
If we adhere to patient autonomy and shared decision making, we may consider the perception of no treatment choice as a negative outcome of treatment decision-making. However, if this is the result of the patients’ preference for less active involvement in treatment decision-making, the topic of perception of no treatment choice may be viewed in a different light.
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Acknowledgement
This study was supported by a grant from the Dutch Cancer Society (UL 2000-2334).
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Appendix A
Appendix A
(Preferred) Involvement in treatment decision-making: |
(1) I have left the choice of whether I have adjuvant chemotherapy or not to my doctor. |
(2) I can judge for myself whether adjuvant chemotherapy is necessary. |
(3) People differ in the degree to which they want to take part in treatment decision-making about adjuvant chemotherapy. Some patients prefer to leave decisions about chemotherapy up to their doctor, while others prefer to participate in these decisions. Please check the statement that best describes what you prefer:a |
I prefer that the doctor makes the decision about treatment with adjuvant chemotherapy. |
I prefer that the doctor makes the decision about treatment with adjuvant chemotherapy, but strongly considers my opinion. |
I prefer that the doctor and I make the decision about treatment with adjuvant chemotherapy together on an equal basis. |
I prefer that I make the decision about treatment with adjuvant chemotherapy, but strongly consider the doctor’s opinion. |
I prefer that I make the decision about treatment with adjuvant chemotherapy. |
Perceived clinical benefits: |
If I am treated with adjuvant chemotherapy, then ... |
(4) My life will be prolonged. |
(5) The risk of the disease coming back will be less. |
(6) My chance of being cured will be greater. |
Perceived psychological benefits |
If I am treated with adjuvant chemotherapy, then ... |
(7) I believe that I will have done everything I can to be cured. |
(8) I will think that I am actively contributing something towards my cure. |
(9) I will be less worried about the disease recurring. |
Being able to cope with the side-effects of treatment |
Do you think that you could cope with the side-effects of adjuvant chemotherapy if they consisted of: |
(10) Mild nausea, mild fatigue, and mild hair loss? |
(11) Severe nausea, severe fatigue, and severe hair loss? |
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Jansen, S.J., Otten, W. & Stiggelbout, A.M. Factors affecting patients’ perceptions of choice regarding adjuvant chemotherapy for breast cancer. Breast Cancer Res Treat 99, 35–45 (2006). https://doi.org/10.1007/s10549-006-9178-z
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DOI: https://doi.org/10.1007/s10549-006-9178-z