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Correlation of Lymphoma Patient Information Level with Healthcare Experience

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34%
45%
21%
Adequate Information
Somewhat Adequate Information
Inadequate Information
Across recent health reform research, there is growing
advocacy and awareness surrounding the idea that patients
should act as more effective managers of their health and
healthcare. Knowledge dissemination is frequently named as a
preliminary requirement for this shift in attitude and behaviours.
In 2017, the Lymphoma Coalition (LC) conducted a mixed
methods investigation to determine if evidence exists pointing to
better outcomes for more ‘informed’ patients. A key theme was
identified: when a patient has knowledge surrounding their
condition, they are more inclined to be confident in sustaining
an active patient role, they ask more questions and their patient
experience is improved.
To continue this investigation, the LC utilised the 2018 Global
Patient Survey (GPS) on Lymphomas and CLL to further
explore patient awareness and understanding, sources and
level of information, support from healthcare professionals, and
the impact this has on the patient experience.
1) INTRODUCTION & OBJECTIVES
Study Design
Online global survey (2018 LC GPS) of patients with
lymphomas (including CLL).
Hosted on a third-party portal from January 2018 to March
2018 in 19 languages.
Question topics: patient information and support, fear of
relapse, fatigue, living with side effects, and barriers to care.
Participants
The survey was advertised through the social media of 65+
lymphoma-related patient organisations, Lymphoma Hub,
scientific partners, INTERLYMPH, and HCPs.
6631 participants took part from all over the world (70+
countries).
Statistical Analysis
A minimum completion threshold (Total_M 0.70) was defined
in order to eliminate partially completed surveys. Additional
data sanitisation was completed.
Descriptive statistics were performed for all questions of the
survey. Associations between factors were examined
through cross-tabulations and chi-square tests (p=0.05).
All statistical analyses were performed by a third-party
scientific research institute with IBM SPSS v21.
2) METHODS
3) RESULTS
4) CONCLUSION
Having a perceived adequate information level was
correlated with more self-reported positive healthcare
experiences. Patients with adequate information reported
bettered management of their health and healthcare
through improved understanding, confidence levels, and
communication. Therefore, access to credible timely
information is an important aspect to a successful patient
experience. These results present implications for both
patient outcomes (health behaviours, health status) and
costs to the healthcare system.
ACKNOWLEDGEMENTS
Special thanks to all patients and the LC member organisations
who offered their insight and support as well as to the many
other organisations, pharmaceutical companies, medical
professionals, pharmacists and individuals who generously
shared their knowledge, resources and understanding for this
project.
Natalie Dren, BSc, MPH1*, Lorna Warwick1, Karen Van Rassel1,
Theodoros Moysiadis2, Christina Karamanidou, MSc, PhD2, Aliki Xochelli, MD, PhD2
Correlation of Lymphoma Patient Information Level with Healthcare Experience
1Lymphoma Coalition, Mississauga, Canada, 2Institute of Applied Biosciences, Centre for Research and Technology Hellas, Thessaloniki, Greece
0
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Did you seek
clarification on things
you did not
understand?
Did you feel confident
voicing your concerns
to your doctor?
Did you feel you had
the right to take the
doctor's time to discuss
your concerns?
Respondents (%)
Adequate Information Somewhat/Inadequate Information*
0
5
10
15
20
25
30
35
40
12345
Respondents (%)
Understanding Level (1 lowest, 5 highest)
Understanding of Process and Stages of Care
(a)
0
5
10
15
20
25
30
35
40
12345
Respondents (%)
Understanding Level (1 lowest, 5 highest)
Understanding of Side Effect Management
(b)
0
10
20
30
40
50
60
70
80
Felt in control Felt confident Had good conversations
with their doctor about
care and treatment plan
Felt confident sourcing
and determining the
trustworthiness of
information about their
disease
Respondents (%)
Adequate Information Somewhat Adequate Information Inadequate Information
Across all categories, improved communication was reported
by those with adequate information (Figure 4). Additionally, the
general reporting of physical, medical, and psychosocial side
effects was statistically dependent on the information level
variable.
Adequately informed respondents felt more
confident in determining the need for medical care
vs. handing a health problem on their own (59%)
compared to somewhat (35%) and inadequately
(22%) informed respondents. Similar trends were
observed across the majority of feeling categories
(Figure 3). ‘Most days’, adequately informed
respondents reported experiencing low levels of
negative feelings (out of control, fearful) and
inadequately informed respondents reported
experiencing low levels of positive feelings (in
control, mentally/physically strong).
The impact of perceived information level (Figure 1) was reflected in respondent’s understanding of the medical aspects of their
lymphoma, diagnosis and care (Table 1, Figures 2(a) &(b)).
3.1 Levels of Understanding
3.2 Respondent Feelings
3.3 Doctor-Patient Communication
Table 1. Respondents’ understanding after their initial visit with the doctor based on their perceived
information level
Figure 2.(a) Respondents’ understanding of the process and stages of their care and (b) side effect management after their initial visit with their doctor based on
perceived information level
Figure 1. Level of information respondents perceived
they had overall
Figure 3. Respondents’ feelings ‘most days’ according to perceived information level
Figure 4. Respondents’ communication with the doctor based on perceived
information level
*Somewhat/inadequate information levels grouped as a comparator
*Somewhat/inadequate information levels grouped as a comparator
*Disclosure: For all authors, there are no relationships to disclose.
ResearchGate has not been able to resolve any citations for this publication.
ResearchGate has not been able to resolve any references for this publication.