Price M, Ravelo A, Sae-Hau M, Torney PA, Gonzalez V, Weiss ES, Mansfield C, Mange B, Ortiz EC, Masaquel A, Dawson KL. Patient-reported disease burden in chronic lymphocytic leukemia, diffuse large B-cell lymphoma, and follicular lymphoma: results from a national patient advocacy survey. J Clin Oncol. 2019 May;37:e18198.


Background: Evaluations of patients’ (pt) burden and priorities are increasingly important as novel treatments are developed. We aimed to better understand pt-reported disease burden in chronic lymphocytic leukemia (CLL), diffuse large B-cell lymphoma (DLBCL), and follicular lymphoma (FL).

Methods: We developed a survey to understand pt disease burden, designed in consultation with medical experts, pt advocacy organizations, and survey scientists. Concept elicitation and cognitive pretesting were conducted. The survey was administered electronically to pts who had received either initial or subsequent treatment within the past year and consisted of categorical Likert options that quantified the impact of disease on physical function, sleep, cognition, work, emotional health, and quality of life (QoL).

Results: The Leukemia & Lymphoma Society and the Lymphoma Research Foundation recruited 424 pts: 309 with CLL, 59 with DLBCL, and 69 with FL; 51% were female. Mean age was 66 (range: 22–95). Results suggest that pts experience substantial disease burden across all surveyed subtypes. The most noteworthy results are highlighted in the following table that indicates the percentage of pts who agreed or strongly agreed to statements about disease burden. Additionally, large proportions of pts worried about their disease returning or getting worse (72% of pts with CLL, 83% of pts with DLBCL, and 79% of pts with FL), indicating high impact regardless of the indolent or aggressive nature of their disease. Most pts indicated that delaying disease progression was important to them (96% of pts with CLL, 96% of pts with DLBCL, and 92% of pts with FL). Employment status changed for 31% of pts who were working full or part time or on contract because of their diagnosis and treatment.

Conclusions: Pts with CLL, DLBCL, and FL report experiencing substantial disease burden. Data from studies focusing on pt-reported disease burden can be used for education of the clinical community to address the key concerns of pts.

Share on: