This study presents a unique look at how CLL patients are faring in this complicated therapeutic landscape, by comparing their level of understanding of key issues after their initial doctor’s appointment with that of diffuse large B-cell lymphoma (DLBCL) patients (given that DLBCL has a more established standard of care), using the Lymphoma Coalition’s (LC) 2018 Global Patient Survey (GPS) on lymphomas and CLL. In addition, this study examined doctor-patient communication and support surrounding side effect management.
Introduction In recent years, healthcare reform strategies have encouraged patients to become more participatory in the effective management of their health and healthcare. Knowledge dissemination is required to incite and sustain this shift, and there is a growing body of evidence pointing to better outcomes for more 'informed' patients. In 2018, the Lymphoma Coalition (LC) analysed data from the 2018 LC Global Patient Survey (GPS) on Lymphomas and CLL and determined that 'adequately informed' patients reported more positive healthcare experiences. To further assess this correlation, the LC compared 2 patient subpopulations: Extranodal Natural Killer T-cell lymphoma (ENKTL) patients, and Waldenstrom Macroglobulinemia (WM) patients. Both of these rare subtypes present complicated disease landscapes for patients to navigate as they are difficult to understand, treat, and manage. However, 2018 LC GPS results indicated that across all lymphoma subtypes (14 analysed), ENKTL patients reported being the least informed and WM patients the most. The LC compared how this affected patient understanding, patient-doctor communication, and psychosocial side effects. Methodology This study is a sub-analysis of the 2018 LC GPS, which was available in 19 languages and was hosted on a third-party portal from January-March 2018. Globally, there were 6631 participants. Raw data was entered, merged, and cleaned in IBM SPSS v21. The least (ENKTL n=177) and most (WM n=764) informed lymphoma subtypes (lowest and highest proportion of 'adequately' informed patients, respectively) were identified and demographics were compared. Comparison of the subgroup of patients who reported either having the 'most' or the 'least' understanding of key issues surrounding diagnosis and care was completed. Comparison of the subgroup of patients who reported either 'yes' or 'somewhat/no' to questions about patient-doctor communication was completed. The prevalence of psychosocial issues during and after treatment was compared. Differences in proportions were tested using chi-square tests (p=0.05) and odds ratios with 95% CI. Results Of all subtypes analysed, the ENKTL subgroup had the highest proportion of inadequately informed patients (35%), and the lowest proportion of adequately informed patients (13%). The WM subgroup had the highest proportion of adequately informed patients (57%) and the lowest proportion of inadequately informed patients (9%). Both subtypes used the same primary information sources (doctor and websites) and sought information within the same time-span (immediately upon diagnosis). ENKTL and WM patients differed significantly in distribution of age, sex, and residence (all p values <0.05) (table 1). The majority (97%) of ENKTL patients lived in Asia, while the majority (72%) of WM patients lived in North America (NA). Analysis of level of understanding of key issues after patient's initial doctor's appointment showed that compared to WM patients, ENKTL patients were nearly twice as likely to have less understanding of their diagnosis, initial treatment, and different treatment options (OR=1.94, 1.99, 1.84 respectively) (table 2). Compared to ENKTL patients, a greater proportion of WM patients reported having a very good understanding across all issues. Analysis of patient-doctor communication showed that compared to WM patients, ENKTL patients were more likely to not (somewhat/no) communicate all of the issues analysed (table 3). ENKTL patients were twice as likely as WM patients to not communicate medical issues (OR=2.20) and to not seek clarification on things they did not understand (OR=2.28). ENKTL patients were 4 times as likely as WM patients to not feel confident voicing concerns (OR=4.43). Compared to WM patients, the reported prevalence of all psychosocial issues (both during and after treatment) was higher for ENKTL patients (figures 1&2). Changes in relationships and fear of relapse were top reported concerns for both subtypes. ENKTL patients were particularly affected by stress related to finances. Conclusion Compared to ENKTL patients (least informed subtype group in the GPS), WM patients (most informed) reported improved understanding and patient-doctor communication, and lesser prevalence of psychosocial issues. In the future, LC plans to investigate the potential confounding effects of the demographic factors (particularly age) and cultural factors (Asia vs NA). Disclosures No relevant conflicts of interest to declare.
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.