Attitudes toward Participation in Research, New Treatments, and Medication Side Effects among Multiple Myeloma and Myelodysplastic Syndrome Patients - The Patient Registries at Slone: Myeloma & MDS.
Authors: Van Bennekom Carla M. , Abel Gregory A. , Stone Richard M. , Anderson Kenneth C. , Raje Noopur , Kaufman David W. 
Published: October 2019

Abstract
Background: Exploration of multiple myeloma (MM) and myelodysplastic syndrome (MDS) patients’ attitudes toward participation in research, newly approved treatments, and potential treatment side effects can guide efforts to increase both participation in research and acceptance of treatments among diverse patient subgroups.
Methods: The Patient Registries at Slone: Myeloma & MDS are national disease-based observational registries conducted by Boston University. All patients diagnosed with these diseases within 4 months of enrollment are eligible for inclusion. Subjects enroll by mail or over the Internet; information on treatment, clinical events, quality of life, and attitudes toward research participation, new treatments, and possible side effects is obtained by questionnaire at baseline and at six-month intervals. We reviewed answers to attitudinal questions obtained from baseline questionnaires completed by 104 MM and 126 MDS patients enrolled between June 2006 and June 2007 (residing in 40 states). We also calculated a composite “side effect concern” score based on the answers to 11 questions on specific side effects.
Results: Most patients reported willingness to participate in clinical trials (81% MM; 86% MDS) and to consider a new treatment that had benefited some patients, but for which side effects were not yet known (81% MM; 87% MDS). Differences among subgroups categorized according to age, geographic region of residence, education, or race were small. Thirteen percent, 65%, and 22% reported they were very, somewhat, and not at all willing, respectively, to try a new, potentially beneficial treatment that could also rarely cause death. Approximately 75% of patients reported they would be very concerned about serious infection as a treatment side effect, and 36% and 29%, respectively, reported they would be very concerned about vomiting and fever. Most patients reported lower levels of concern about other possible side effects. Median side effect concern scores were 14 for both MM and MDS patients (range 1–24 for MM and 0–24 for MDS). The median score was 14 for both those willing and those not willing to participate in research. The median was 15.5 for those not at all willing to try a new treatment compared to 12.5 for those very willing to try such treatment (p=0.02). Scores did not vary appreciably by age, geographic region of residence, education, race, or history of any of 6 diseases. MDS patients who reported having undergone treatment for their disease had a median score of 13 compared to 16 for those who reported no treatment (p=0.03); among MM patients, the medians were similar for those with and without prior treatment.
Conclusion: MM and MDS patients in a large national registry largely indicate a willingness to participate in research and consider newly-approved treatments. Most patients reported concerns about possible side effects of treatment; higher levels of concern were associated with less willingness to try a new treatment, but were not associated with willingness to participate in research.