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A Cross-Sectional Study Examining the Diagnosis and Psychosocial Experiences of Patients with Cutaneous Lymphomas

Authors:

Abstract

Cutaneous lymphoma is a rare and complex disease. Patients require clear and credible information, yet patients reported not receiving enough information at diagnosis. Additionally, patients with cutaneous lymphoma were disproportionately affected by psychosocial issues specific to their disease; indicating psychosocial assessment and intervention should be a high priority for this population. In the future, LC would like to explore how demographic differences may have confounded results.
A Cross-Sectional Study Examining the
Diagnosis and Psychosocial Experiences of
Patients with Cutaneous Lymphomas
N. Dren, MPH, BSc(Hons)¹; O. A. Bamigbola, MB;BS,
MSc(Epid)¹; L. Warwick, BA, B Ed², S. Thornton, BBA³
¹Research, Lymphoma Coalition, Mississauga, ON, Canada; ²Management,
Lymphoma Coalition, Mississauga, ON, Canada; ³Management, Cutaneous
Lymphoma Foundation, Birmingham, MI, United States
Disclosure
Dren, N., Bamigbola, O. A. & Warwick, L. have the following financial
relationships to disclose:
Pfizer Inc- research funding
AbbVie Corporation- research funding
Takeda Oncology- research funding
Lymphoma Coalition (LC)
Global network of patient groups: Cutaneous
Lymphoma Foundation (CLF) is a member
Since 2002- incorporated in 2010
Equity in lymphoma outcomes across borders
Ensuring impact within two pillars:
1. Information
2. Advocacy
Global
Asia-
Pacific
Europe
Middle
East &
Africa
North
America
South
America
Introduction
Lymphoma Coalition (LC) research focuses on the experience of patients with
lymphoma
Cutaneous lymphoma is not easily diagnosed
Cutaneous lymphoma is a rare and complex disease that can be difficult to
understand
Implications for quality of life and psychosocial well-being
This study examines the diagnosis and psychosocial experiences of patients with
cutaneous lymphomas compared to patients with other all lymphoma subtypes
(grouped) globally
Methodology: LC 2020 Global Patient Survey
(GPS) on Lymphomas and CLL
Biennial online global survey
Patient and caregiver versions
Live January-March 2020 in 19 languages
Overall number of completed responses 11,878 including:
9,179 patients
(all subtypes)
2,699 caregivers
(all subtypes)
Methodology Cont.
Study Design and Participants Statistical Analysis
Sub-analysis of the LC 2020 GPS
Only patient responses included (n=9,179)
Two subgroups for comparison:
1. Patients with cutaneous lymphoma (‘CL
patients’) n=470
2. Rest of patient respondents (all other
subtypes grouped) (‘global patients’)
n=8,709
Raw data was entered, merged, and
cleaned in IBM SPSS v 27
Demographic comparison of patient
subgroups (CL vs. global patients) was
completed
Questions relating to initial diagnosis
experience, information provision, and
psychosocial issues were analysed
Differences in proportions were tested
using chi-square tests (p=0.05)
CL Patient Demographics
17%
75 %
8%
Subtype Breakdown
Cutaneous Mycosis Fungoides Sézary syndrome
Region of Residence
CL Patient
%
Americas
67
Europe
23
Asia and Pacific
9
Middle East and Africa
1
© 2020 LC Global Patient Survey
© 2020 LC Global Patient Survey
Results: Demographic Comparison
The two patient groups differed significantly in all the demographic categories examined:
- Country of residence distribution (=1428.42, p< 0.001)
- Area of residence distribution (=74.68, p< 0.001)
- Age distribution (=125.49, p< 0.001)
- Sex distribution (=24.32, p< 0.001)
- Education level distribution (=56.67, p< 0.001)
- Employment status distribution (=19.04, p=0.025)
- Household status distribution (=23.20, p< 0.001)
Results: Initial Diagnosis Experience
© 2020 LC Global Patient Survey
010 20 30 40 50 60
Less than 3 months
3 - 6 months
6 - 12 months
More than 12 months
Don’t know/ Can’t remember
No symptoms/ Not applicable
Patient %
Time from Intitial Meeting with Doctor to Diagnosis
Global (rest of subtypes) CL
X2: 509.98
(p< 0.001)
Results: Initial Diagnosis Experience Cont.
© 2020 LC Global Patient Survey
Info on Process & Stages of Care
CL
Global*
Yes + understood (fully + slightly)
69 78
Yes + did not understand
5 5
No
26 13
Don’t know/can't remember
0 4
Total
100 100
Info on Side
-Effect Management CL
Global*
Yes + understood (fully + slightly)
53 72
Yes + did not understand
1 3
No
39 20
Don’t know/can't remember
7 5
Total
100 100
© 2020 LC Global Patient Survey
X2: 26.31
(p< 0.001)
X2: 36.94
(p< 0.001)
*Global= rest of subtypes *Global= rest of subtypes
Results: Initial Diagnosis Experience
© 2020 LC Global Patient Survey X2: 20.79
(p< 0.001)
0
10
20
30
40
50
60
Too much Right amount Not enough Don't know/can't
remember
Patient %
How Much Information Patients Received around Time of Diagnosis
CL Global (rest of subtypes)
Results: Psychosocial Issues
© 2020 LC Global Patient Survey
Don’t know/Can't remember
Results: Patients’ Experience of Support
© 2020 LC Global Patient Survey
0
20
40
60
80
100
From doctors From
family/friends
Emotional Financial Practical
Patient %
Patients who Received Enough Support in Different Areas
CL Global (rest of subtypes)
Conclusions
Time to diagnosis remains unacceptably long for many
patients with cutaneous lymphoma (12+ months)
Many patients with cutaneous lymphoma are not receiving
enough information at diagnosis
Patients with cutaneous lymphoma are disproportionately
affected by certain psychosocial issues specific to their
disease, and require more support across various areas
For more information: https://www.lymphomacoalition.org/
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