Patient-reported disease burden and age: results from a national patient advocacy survey of patients with chronic lymphocytic leukemia, diffuse large b-cell lymphoma and follicular lymphoma

Abstract

Introduction: Evaluation of patients' psychosocial burden related to their cancer and its treatment is important for shared decision making by patients and their healthcare team. We aimed to better understand the impact of age on this burden as reported by patients with chronic lymphocytic leukemia (CLL), diffuse large B-cell lymphoma (DLBCL), and follicular lymphoma (FL) using data from a large US patient advocacy survey. Methods: We developed a survey to understand patients' perceptions of disease burden and impact on physical and emotional health. The survey was designed through consultation with medical experts, patient advocacy organizations and research team members. Concept elicitation and cognitive pretesting were conducted with patients to inform the survey content. The survey was administered electronically to patients with CLL, DLBCL, or FL who had received either initial or subsequent treatment within the past year. The survey consisted of categorical Likert options that quantified the impact of disease on physical function, sleep, cognition, work, emotional health and quality of life (QoL). The survey data were analyzed descriptively by patients' reported age: 60 years or older versus less than 60 years. Results: The survey was completed by 424 patients who were associated with The Leukemia & Lymphoma Society and/or the Lymphoma Research Foundation (309 patients with CLL, 59 patients with DLBCL and 69 patients with FL). Respondents had a mean age of 66 years (range: 22-95 with five patients electing not to report their age), 79% were 60 years or older, and 51% were female. A greater proportion of younger patients (<60 years) reported negative impact of the disease on various aspects of their lives as compared with older patients. Negative impact on emotional health, on personal relationships and on overall health-related QoL, as well as worry about disease returning or getting worse are highlighted in the following Table. Physical impacts of diseases were also reported in a greater proportion of younger patients versus older patients, specifically in reports of nausea, pain, appetite, sleep patterns, concentration and multi-tasking. Additionally, 95% of patients overall, regardless of age, agreed that delaying disease progression was important to them. Conclusions: Evaluation of disease burden is important as patients and healthcare providers are empowered to take more active roles in shared decision making for treatments that are aligned with patients' concerns and priorities. While patients with CLL, DLBCL, and FL report substantial disease burden, the negative impact of disease was reported in a greater proportion of younger patients (<60 years) than in older patients (≥60 years). Differences in patient-reported disease burden based on age and other patient circumstances should be explored as potential key concerns of patients for education of the clinical community.