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.


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.


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.


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).


No relevant conflicts of interest to declare.

Author notes


Asterisk with author names denotes non-ASH members.

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