TY - JOUR
T1 - Patient Experience in Clinical Trials
T2 - Quality of Life, Financial Burden, and Perception of Care in Patients With Multiple Myeloma or Lymphoma Enrolled on Clinical Trials Compared With Standard Care
AU - Sidana, Surbhi
AU - Allmer, Cristine
AU - Larson, Melissa C.
AU - Dueck, Amylou
AU - Yost, Kathleen
AU - Warsame, Rahma
AU - Thanarajasingam, Gita
AU - Cerhan, James R.
AU - Paludo, Jonas
AU - Rajkumar, S. Vincent
AU - Habermann, Thomas M.
AU - Nowakowski, Grzegorz S.
AU - Lin, Yi
AU - Gertz, Morie A.
AU - Witzig, Thomas
AU - Dispenzieri, Angela
AU - Gonsalves, Wilson I.
AU - Ansell, Stephen M.
AU - Thompson, Carrie A.
AU - Kumar, Shaji K.
N1 - Funding Information:
Supported by the ASCO Conquer Cancer Foundation Young Investigator Award 2017. S.S. was supported by KL2TR003143, KL2 Mentored Career Development Program, Stanford Clinical Translational Science Award Program for part of the study duration. This study was also supported by National Institutes of Health funding, grant U01 CA195568.
Publisher Copyright:
© 2022 American Society of Clinical Oncology.
PY - 2022/5/1
Y1 - 2022/5/1
N2 - PURPOSE:Patients' concerns regarding clinical trial (CT) participation include apprehension about side effects, quality of life (QoL), financial burden, and quality of care.METHODS:We prospectively evaluated the experience of patients with multiple myeloma or lymphoma who were treated on CTs (CT group, n = 35) versus patients treated with standard approaches (non-CT group, n = 88) focusing on QoL, financial burden of care, and patients' perception of quality of care over a 1-year period.RESULTS:There were no significant differences in any of the patient-reported outcomes in CT versus non-CT groups. We observed an initial decline in overall QoL in the first 3 months across both groups, driven primarily by physical and functional well-being. QoL gradually improved and was above baseline by month 12. Patients reported highest improvement in the functional well-being subdomain. Patients in both groups reported high satisfaction with the quality of care received, and there were no differences in overall satisfaction, communication with team, or access to care. At baseline, 16%-19% of patients reported financial burden, which increased to a peak of 33% in the CT group and to 49% in the non-CT group over the course of 1 year. There was no significant difference in financial burden in the two groups overall. Most of the patients reported getting all the care that was deemed medically necessary in both groups. However, a significant proportion of patients reported having to make other kinds of financial sacrifices because of their cancer (CT group: 33% of patients at baseline and 21%-40% over 1 year; non-CT group: 19% at baseline and 25%-36% over 1 year).CONCLUSION:Patients treated on CTs reported comparable QoL and quality of care with the non-CT group. A high proportion of patients reported financial burden over time in both groups. Our findings can serve as a guide to educate patients regarding CT participation and highlight the need to address the significant financial burden experienced by patients with cancer.
AB - PURPOSE:Patients' concerns regarding clinical trial (CT) participation include apprehension about side effects, quality of life (QoL), financial burden, and quality of care.METHODS:We prospectively evaluated the experience of patients with multiple myeloma or lymphoma who were treated on CTs (CT group, n = 35) versus patients treated with standard approaches (non-CT group, n = 88) focusing on QoL, financial burden of care, and patients' perception of quality of care over a 1-year period.RESULTS:There were no significant differences in any of the patient-reported outcomes in CT versus non-CT groups. We observed an initial decline in overall QoL in the first 3 months across both groups, driven primarily by physical and functional well-being. QoL gradually improved and was above baseline by month 12. Patients reported highest improvement in the functional well-being subdomain. Patients in both groups reported high satisfaction with the quality of care received, and there were no differences in overall satisfaction, communication with team, or access to care. At baseline, 16%-19% of patients reported financial burden, which increased to a peak of 33% in the CT group and to 49% in the non-CT group over the course of 1 year. There was no significant difference in financial burden in the two groups overall. Most of the patients reported getting all the care that was deemed medically necessary in both groups. However, a significant proportion of patients reported having to make other kinds of financial sacrifices because of their cancer (CT group: 33% of patients at baseline and 21%-40% over 1 year; non-CT group: 19% at baseline and 25%-36% over 1 year).CONCLUSION:Patients treated on CTs reported comparable QoL and quality of care with the non-CT group. A high proportion of patients reported financial burden over time in both groups. Our findings can serve as a guide to educate patients regarding CT participation and highlight the need to address the significant financial burden experienced by patients with cancer.
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U2 - 10.1200/OP.21.00789
DO - 10.1200/OP.21.00789
M3 - Article
C2 - 35580285
AN - SCOPUS:85131156936
SN - 2688-1527
VL - 35
JO - JCO Oncology Practice
JF - JCO Oncology Practice
M1 - OP.21.00789
ER -