Abstract
Myeloma is a plasma cell malignancy of the elderly, affecting over 20,000 individuals annually. The advent of novel agents has increased the number of treatment options for older adults newly diagnosed with myeloma, but it has also led to clinical uncertainties. These uncertainties regarding optimal therapy are due in part to the lack of randomized controlled trials comparing new treatment options over the existing options. There is considerable evidence that patients want to be informed and consulted with regard to the impact of treatment, not only on survival but also on quality of life. However, no data exist regarding the process of treatment decision making and degree of patients' control preferences over treatment decisions in older adults diagnosed with myeloma.
This dissertation study employed a multi-method, cross-sectional survey design. Physicians and older adults diagnosed with myeloma, ages 60 years and above were interviewed separately to describe how treatment decisions were made from both perspectives. After the interview, each participant was asked to report their degree of preferred control over treatment decisions using the Control Preference Scale (CPS) and to complete the Information Needs Questionnaire to assess their information priorities.
The results revealed that patient and physician participants have various treatment considerations to arrive at a possible "best treatment decision." A high percentage of these older adults with myeloma want some control of the treatment decision (45% preferred shared and 50% active roles). Their top three priority information needs related to "different types of treatments" and corresponding advantages/disadvantages, the "likelihood of cure" and "caring for myself at home." No statistically significant differences in decisional role preferences and priorities of information needs were seen among various sociodemographic factors.
Since older adults newly diagnosed with myeloma will most likely prefer to participate in treatment decision-making, physicians should assess their preferences. Physicians should elicit from patients their treatment preferences to account for contextual factors that might be overlooked if their opinions on therapies are not solicited. Health care professionals should assess and address the priority of information needs of myeloma patients and encourage patients to express their decisional role preferences to their physician.