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Comparative Study of Information Needs and Support Experiences of Patients with Lymphoma: CAR T vs Non CAR T

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Abstract

CAR-T patients would like more information and support than what was provided by their doctors. Doctors are more likely to address physical aspects of care. Gaps in need exist in the communication and support for psychosocial issues, and in the explanation of the processes of care in a patient-friendly manner. Lymphoma Coalition advocates for stronger patient-centered care that addresses these gaps in need.
INTRODUCTION
Chimeric antigen receptor T-Cell (CAR-T) therapy continues to
revolutionise the treatment of relapsed and refractory lymphomas;
however, ensuring patient-centered medical practice relating to CAR-T
may not be progressing in tandem.
RESULTS CONT.
Patients in both groups received the most support from family and
friends (CAR-T-98%; non-CAR-T-91%), and they felt least supported
with their finances (CAR-T-50%; non-CAR-T-36%) (Figure 1). Almost a
fifth of CAR-T patients did not feel supported by their doctors (17%).
However, there was no significant difference in support needs between
the CAR-T patients and non-CAR-T patients.
RESULTS
CAR-T patients were significantly different in age group distribution
when compared with non-CAR-T patients (p<0.001) but not in sex
distribution (p=0.81) (Table 1). The two groups also significantly
differed in lymphoma subtypes (p<0.001) (Table 1).
CAR-T patients reported needing more information than non-CAR-T
patients in all the listed areas , except for fertility (Table 2). CAR-T
patients were twice as likely to need information regarding support
for their families than non-CAR-T patients [OR-2.3(1.19-4.42),
p=0.01].
METHODS
Study Design
This study is a sub-analysis of the 2020 LC GPS, which is a biennial
online global survey
The 2020 LC GPS was hosted online on a third-party portal from
January-March 2020 in 19 languages
Study Population
Globally, there were 11,878 respondents made up of 9,179 patients
and 2,699 caregivers from 90+ countries
There were 504 patients included in this analysis
These patients were grouped into 2 subgroups for analysis: patients
who received CAR-T therapy (n=55) and patients who had relapsed
more than once and had not received CAR-T therapy (n=449)
Statistical Analysis
Raw data was entered, merged, and cleaned in IBM SPSSv27
Demographic comparison of the patient subgroups (CAR-T vs non-
CAR-T) was completed
Questions relating to patients’ information and support experiences
were analysed using univariate, bivariate, and multivariate analysis
CONCLUSIONS
The results show that CAR-T patients would like more information and
support than what was provided by their doctors. Doctors are more
likely to address physical aspects of care. Gaps in need exist in the
communication and support for psychosocial issues, and in the
explanation of the processes of care in a patient-friendly manner.
Lymphoma Coalition advocates for stronger patient-centered care that
addresses these gaps.
OBJECTIVES
This study aims to provide insight to the information and support
experience of patients with lymphoma who have been treated with
CAR-T therapy in comparison to those who have not been treated with
CAR-T therapy, using the 2020 Lymphoma Coalition (LC) Global Patient
Survey (GPS) on Lymphomas and CLL.
A Comparative Study of Information Needs and Support Experiences of
Patients with Lymphoma: CAR-T versus non-CAR-T
Figure 1. Support experiences of patients with lymphoma (CAR-T versus non-CAR-T)
Table 1. Demographic distribution of patients
Table 2. Areas where patients needed more information
O. Bamigbola, MB;BS, MSc(Epid)1; N. Dren, BSc, MPH1; and L. Warwick, BA, BEd2.
1Research, Lymphoma Coalition, Mississauga, ON, Canada; 2Management, Lymphoma Coalition, Mississauga, ON, Canada
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