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Abstract

Background: 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 behaviors. In 2017, the Lymphoma Coalition (LC) conducted a mixed methods investigation to determine if evidence exists pointing to better outcomes for more 'informed' patients. Though outcome measurements and definitions varied throughout the literature, one theme remained consistent: 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 utilized 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 (HCPs), and the impact this has on the patient experience. Methods: The 2018 LC GPS was hosted on a third-party portal from January 2018 to March 2018. Patient and caregiver versions were prepared and made available in 19 languages. The survey questions focused on the following: patient information and support, fear of relapse, fatigue, living with side effects, and barriers to care. The survey was advertised through the social media of 65+ lymphoma-related patient organisations, Lymphoma Hub, scientific partners, INTERLYMPH, and HCPs. Overall, 6631 participants took part from all over the world. To perform the analysis, the surveys completed by patients and those completed by caregivers were merged. A minimum completion threshold (0.30) was defined in order to eliminate partially completed surveys. Descriptive statistics were performed for all questions of the survey. Associations between factors were examined through cross-tabulations and chi-square tests (significance level set at p=0.05). All statistical analyses were performed with IBM SPSS v21. The results presented are those specific to the 'patient information and support' sub-investigation. Results: When asked what level of information they felt they had overall, 34% of respondents globally felt they had received adequate information, 45% somewhat adequate and 21% inadequate information. The impact of perceived information level was reflected in respondent's understanding of the medical aspects of their lymphoma, diagnosis and care. Respondents with adequate information reported a greater understanding of all topics surrounding diagnosis and care (subtype, treatments, side effect management) following their initial visit to the doctor (Table 1, Figures 1 & 2). Adequately informed respondents were more confident in determining the need for medical care vs. handling 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 and understanding categories (Figure 3). Generally, adequately informed respondents reported experiencing low levels of negative feelings (out of control, fearful) 'most days', while inadequately informed respondents reported experiencing low levels of positive feelings (in control, mentally/physically strong) 'most days'. To analyze doctor-patient communication, somewhat and inadequate information levels were grouped as a comparator against adequate information; across all categories, improved communication was reported by those with adequate information (Figure 4). Additionally, the general reporting of physical, medical, and psycho-social side effects was statistically dependent on the information level variable. 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 behaviors, health status) and burdens to the healthcare system.
CORRELATION OF LYMPHOMA PATIENT INFORMATION LEVEL WITH
HEALTHCARE EXPERIENCE
Natalie Dren, BSc, MPH1*, Lorna Warwick2*, Karen Van Rassel2*, Theodoros Moysiadis3*,
Christina Karamanidou, MSc, Dip.Hyp., PhD4* and Aliki Xochelli, MD, PhD4*
1Research, Lymphoma Coalition, Mississauga, ON, Canada; 2Lymphoma Coalition, Mississauga,
ON, Canada; 3Institute of Applied Biosciences, Center for Research and Technology Hellas,
Thermi, Thessaloniki, Greece; 4Institute of Applied Biosciences, Centre for Research and
Technology Hellas, Thessaloniki, Greece
Background: 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. Though outcome measurements and definitions varied throughout the
literature, one theme remained consistent: when a patient has knowledge surrounding their
condition, they ask more questions, their patient experience is improved, and they are more
inclined to be confident in sustaining an active patient role. To continue this investigation, the
LC utilized 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 (HCPS), and the impact this has on the patient experience.
Methods: The 2018 LC GPS was hosted on a third-party portal from January 2018 to March
2018. Patient and caregiver versions were prepared and made available in 19 languages. The
survey questions were designed to allow for the examination of the following: patient
information and support, fear of relapse, fatigue, living with side effects, and barriers to care.
The survey was advertised through the social media of 65+ lymphoma-related patient
organisations, Lymphoma Hub, scientific partners, INTERLYMPH, and HCPs. Overall, 6631
participants took part from all over the world. To perform the analysis, the surveys completed by
patients and those completed by caregivers were merged. A minimum completion threshold
(Total_M 0.70) was defined in order to eliminate partially completed surveys. 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 with IBM SPSS v21. The results presented are those specific to the ‘patient
information and support’ sub-investigation.
Results: When asked what level of information they felt they had overall, 34% of respondents
globally felt they had received adequate information, 45% somewhat adequate and 21%
inadequate information. The impact of perceived information level was reflected in respondent’s
ability to understand the medical aspects of their disease, diagnosis and care. Respondents with
adequate information reported that they had a greater understanding of all the following issues
(Table 1, Figures 1 & 2) after their initial visit to the doctor.
Adequately informed respondents were 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 and
understanding categories (Figure 3).
To analyse doctor-patient communication, somewhat and inadequate information levels were
grouped as a comparator against adequate information; 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.
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 healthcare system.
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