INFORMATION NEEDS FOR OLDER WOMEN WITH EARLY STAGE BREAST CANCER WHEN MAKING RADIOTHERAPY DECISIONS
Purpose: Evidence suggests that radiotherapy (RT) may not have substantial benefits for older women with early stage breast cancer, yet more than 75% of patients opt for this treatment. Given that this is a preference sensitive decision, the utilization pattern suggests the decision-making might not be shared appropriately. In preparation of a decision-support tool, the objectives of this study were to identify 1) the information older women with early stage breast cancer need when making RT decisions, 2) who is involved in the decision-making process, and 3) whom patients identify as the main decision-maker.
Method: We surveyed (through face-to-face, phone, or mail) women aged 65 and older who received breast conserving surgery and were receiving adjuvant RT for early stage breast cancer The self-administered survey instrument was constructed with input from patient and professional advisory committees, including breast cancer survivors, advocates of breast cancer care and aging, clinicians, and researchers. Participants rated the importance of 24 statements describing the benefits, side effects, and treatment burden (time and out-of-pocket payment) of RT in relation to treatment decision-making (essential/desired/not important/don't want to know). Participants also indicated who was involved in the decision-making process and the key decision-maker (you/spouse/other family members/friends/doctors/others).
Results: The response rate was 69.8% (74/106). Mean age was 71.5 (SD =5.5) years, ranging from 65 to 87 years. Approximately 53.4% were married and 35.6% had secondary school education or less. There was wide variation in information needs regarding RT decision-making (Table). Participants rated a mean of 18 (range: 3–24) items as “essential.” Participants rated items related to benefits highest, followed by side effects. While participants rated items related to treatment burden lowest, 45 participants (61.5%) rated information on out-of-pocket payment essential. Approximately 96.6% of participants indicated they were the main decision-maker on receiving RT, yet 70.3% indicated other individuals helped them make their decision. Among them, doctors (71.3%), other family members (58.5%), their spouse (46.3%), and friends (18.9%) were involved in their treatment decision-making.
Conclusions: While almost all participants sought to understand the benefits of RT, a substantial proportion of them rated other aspects of treatment as essential, which included side effects and treatment burden.