Background: The US prevalence of multiple myeloma (MM) is estimated at 83,118 as of January 1, 2011(SEER, 2014), and about 24,050 new MM cases will be diagnosed in 2014 (ACS, 2014). With advances in treatment, MM patients are living longer and are confronted with increasingly complex therapeutic decisions. Frequently patients are not fully prepared to discuss the possible treatment options effectively with their provider.
Methods: From July 2013 to July 2014, the Cancer Support Community (CSC) registered 495 people living with MM to the Cancer Experience Registry: MM, an online initiative designed to investigate and raise awareness about the psychosocial impact of MM. Registrants were recruited through an outreach program that included the CSC and The Leukemia & Lymphoma Society (LLS) network of community-based affiliates/chapters, CSC and LLS online communities, CSC’s helpline and LLS’s information resource center, other advocacy organizations, social and other media channels. Those who registered completed a survey about their MM history, status and treatment.
Results:General: 406 (82%) registrants responded to the questionnaire. The present analysis is limited to 280 US based registrants who answered on treatment decision making. The participant median age was 64 years; 54% female, 87% Caucasian, 9.5% African American. Total annual income: 35% <$40K; 35% $40-79K; 30% at least $80K. Median time since MM diagnosis was 4.5 years. 26% did not know stage of their MM. Among those who reported stage: 20% stage I; 18% stage II; 48% Stage III; 10% “other”. 40% reported they experienced a relapse of MM. Treatment Decision Making: Prior to making a treatment decision, 94% reported receiving information about their diagnosis, and 80% received information about their treatment options. 45% described their level of knowledge about treatment options as “quite a bit” or “very much”. However, 33% reported they were not knowledgeable regarding MM treatment (21% “not at all” and 12% “a little bit”). 40% received treatment decision support prior to therapy, and 36% would have liked more support. 16% had little or no involvement in their treatment decision-making process. 25% did not feel they had a treatment choice, and 20% reported they did not have enough time to make a treatment decision. Two-thirds (66%) received a second opinion about medical treatment. 64% of registrants reported that a member of their health care team spoke to them about cancer clinical trials, and 29% participated in a clinical trial. Patient Satisfaction and Empowerment. A majority of MM registrants were satisfied with various aspects of the treatment decision-making process: outcome of the treatment(s) received (82%); doctor’s explanation of the benefits (74%); how they arrived at a decision (71%); how much they participated in making the decision (68%); and their doctor’s explanation of the risks and side effects (67%). 66% received a second opinion about medical treatment. Those who got a second opinion were slightly more satisfied with how they arrived at their treatment decision (OR=1.61; 95% CI=0.90, 2.88; p=0.11), but getting a second opinion did not affect patient’s satisfaction with treatment outcomes. Those who wrote down a list of questions prior to their first visit to discuss treatment options with their health care provider felt significantly more prepared to discuss their treatment options (p<0.01). 65% and 70%, respectively, thought it would be important to get help with gathering information or developing a written list of questions before meeting with their cancer specialists.
Conclusion: Although nearly three-quarters of the sample were satisfied with various aspects of treatment decision-making, including communication about treatment decisions with physicians, more than one-third of MM patients thought they had no choice or felt rushed in making a decision. Those who prepared a list of questions prior to a consultation with the doctor felt significantly more prepared to make appropriate decisions. While most patients reported receiving information about their treatment options, less than half report being knowledgeable about treatment options, and a significant proportion reported not having enough knowledge or support to fully engage in treatment decisions. Further efforts are needed to address gaps in the delivery of treatment decision support to MM patients.
No relevant conflicts of interest to declare.
Asterisk with author names denotes non-ASH members.