A CROSS‐SECTIONAL STUDY ON THE GLOBAL DIFFERENCES IN INFORMATION EXPERIENCES AND NEEDS OF PATIENTS WITH LYMPHOMA AND CLL
Bibliographic record
Abstract
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 healthcare experiences. Aims: This study uses the Lymphoma Coalition (LC) 2020 Global Patient Survey (GPS) on Lymphomas and CLL to describe the global differences in patients’ information experiences at diagnosis, as well as to compare the areas of need for more information. Methods: Globally, 9,179 patients with lymphoma or CLL from 89 countries took part in the LC 2020 GPS. The countries were grouped into regions, and regions with greater than 200 patient respondents were included in the analysis. The five regions analysed were Asia (AS) (n = 2326), Oceania (OC) (n = 695), Europe (EU)(n = 4343), North America (NA) (n = 1543), and South America (SA) (n = 214). Descriptive analyses of questions relating to patients’ information experiences at diagnoses and areas in which they needed more information were performed in IBM SPSS v27. Results: All the regions differed significantly (p < 0.05) in the demographic categories of age, sex, education level, and household status. When asked which time point patients had the greatest need for information, over half of patients in all the regions reported the time point as ‘within the first month following diagnosis’ (AS-62%, OC-58%, EU-57%, NA-53% and SA-59%) (Table 1). Relating to how patients felt about the amount of information they were given upon diagnosis with lymphoma, patients from AS were the most prevalent in reporting they were not given enough information (55%) followed by patients from NA (36%). Additionally, only 30% of patients from AS reported receiving the right amount of information, while 60% and more, of patients from NA, EU, SA, and OC reported the same (60%, 67%, 71% and 70% respectively) (Table 1). When asked about the specific areas patients needed more information in, the most commonly reported areas in all the regions were ‘treatment options’ (AS-76%, OC-44%, EU-50%, NA-61% and SA-40%), ‘diagnosis and what it means’ (AS-58%, OC-45%, EU-56%, NA-51% and SA-38%), and ‘treatment side-effects’ (AS-61%, OC-44%, EU-45%, NA-38% and SA-41%). Patients also reported needing information on ‘support for self care’, ‘psychological support’, ‘support for their families’, and ‘fertility’ (Table 1). Only 2% of patients from AS reported not needing any additional information compared to the other regions (OC-19%, EU-11%, NA-16% and SA-18%) (Table 1). Conclusion: Access to timely and credible medical information remains an essential aspect of a successful patient experience and this study shows that patients with lymphoma have diverse information experiences and needs. It is therefore important that doctors provide information that address(es) each patient's unique information needs. In the future, LC would like to explore how demographic differences may have confounded results. Keywords: Cancer Health Disparities Conflicts of interests pertinent to the abstract L. Warwick Research funding: Takeda, Pfizer and Abbvie O. Bamigbola Research funding: Takeda, Pfizer and Abbvie N. Dren Research funding: Takeda, Pfizer and Abbvie
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How this classification was reachedexpand
Full frame distilled prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.
Codex and Gemma teacher scores by category
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.001 | 0.001 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.000 | 0.000 |
| Science and technology studies | 0.000 | 0.000 |
| Scholarly communication | 0.000 | 0.000 |
| Open science | 0.000 | 0.000 |
| Research integrity | 0.000 | 0.000 |
| Insufficient payload (model declined to judge) | 0.000 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one teacher head, not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".