Journal article
Patient Experience in Clinical Trials: Quality of Life, Financial Burden, and Perception of Care in Patients With Multiple Myeloma or Lymphoma Enrolled on Clinical Trials Compared With Standard Care
JCO oncology practice, Vol.18(8), pp.e1320-e1333
08/2022
DOI: 10.1200/OP.21.00789
PMCID: PMC9377715
PMID: 35580285
Abstract
Patients' concerns regarding clinical trial (CT) participation include apprehension about side effects, quality of life (QoL), financial burden, and quality of care.
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.
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).
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.
Details
- Title: Subtitle
- Patient Experience in Clinical Trials: Quality of Life, Financial Burden, and Perception of Care in Patients With Multiple Myeloma or Lymphoma Enrolled on Clinical Trials Compared With Standard Care
- Creators
- Surbhi Sidana - Stanford UniversityCristine Allmer - Mayo ClinicMelissa C Larson - Mayo ClinicAmylou Dueck - Mayo ClinicKathleen Yost - Mayo ClinicRahma Warsame - Mayo ClinicGita Thanarajasingam - Mayo ClinicJames R Cerhan - Mayo ClinicJonas Paludo - Mayo ClinicS Vincent Rajkumar - Mayo ClinicThomas M Habermann - Mayo ClinicGrzegorz S Nowakowski - Mayo ClinicYi Lin - Mayo ClinicMorie A Gertz - Mayo ClinicThomas Witzig - Mayo ClinicAngela Dispenzieri - Mayo ClinicWilson I Gonsalves - Mayo ClinicStephen M Ansell - Mayo ClinicCarrie A Thompson - Mayo ClinicShaji K Kumar - Mayo Clinic
- Resource Type
- Journal article
- Publication Details
- JCO oncology practice, Vol.18(8), pp.e1320-e1333
- DOI
- 10.1200/OP.21.00789
- PMID
- 35580285
- PMCID
- PMC9377715
- ISSN
- 2688-1527
- eISSN
- 2688-1535
- Grant note
- U01 CA195568 / NCI NIH HHS KL2 TR003143 / NCATS NIH HHS P30 CA015083 / NCI NIH HHS P50 CA097274 / NCI NIH HHS
- Language
- English
- Date published
- 08/2022
- Academic Unit
- Epidemiology
- Record Identifier
- 9984368091402771
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