A cross-sectional study on global disparities in information experiences of patients with lymphoma/CLL.

Abstract

e18517 Background: Patient-centricity remains a cornerstone in the care of patients with lymphoma and CLL, as informed patients are consistently associated with better outcomes and experiences. This study uses the Lymphoma Coalition (LC) 2020 Global Patient Survey (GPS) on Lymphomas and CLL to describe the global differences in the top choices for medical information among patients with lymphoma, as well as differences in their understanding of this information relating to various aspects of their care. Methods: Globally, 9,179 patients from 89 countries took part in the LC 2020 GPS. The countries were grouped into regions, and the regions with greater than 200 patients were included in the analysis (Table). The demographics of the regions were examined, and descriptive analyses of questions relating to information source preferences, information provision at diagnosis (addressing treatment options; process and stages of care; managing treatment side effects), and corresponding levels of patient understanding were performed in IBM SPSS v27. Results: Doctors were the first choice for medical information for patients in each region (SA-82%, AS- 75%, EU-69%, OC-63%, NA-61%). In EU, NA and SA, websites were the most prevalent second and third choice for information (27% and 28%; 30% and 32%; 35% and 27%, respectively). In AS, patient advocacy organisations were the most prevalent second and third choices for information (32% and 40%, respectively), while in OC, the most prevalent second and third choices were nurses (27%) and patient advocacy groups (32%) respectively. Over a fifth of NA patients were not given information on the process and stages of care and how to manage side effects of treatment (21% and 29%, respectively). About a third of patients from SA (32%) reported not getting information on treatment options. Over half of OC patients reported being given information on and completely understanding the different treatment options (51%), processes and stages of care (53%) and how to manage treatment side-effects (58%). Patients from AS were the most prevalent in reporting across the three categories, that they were given information but did not understand it (10%, 7%, 5%, respectively). Conclusions: Globally, patients with lymphoma use various avenues to source the medical information they need, and they differ in their information experiences. Access to appropriate and adequate medical information remains an essential aspect of a successful patient experience and LC advocates that this information be contextual and accessible to all patients with lymphoma. [Table: see text]