Differences in Experiences Reported By Patients with Acute and Chronic Leukemia: A Global Survey

Abstract

The Acute Leukemia Advocates Network (ALAN) in collaboration with CLL Advocates Network (CLLAN) and CML Advocates Network (CMLAN) ran a multi-country survey to provide further evidence on leukemia patient journey, with a focus on the varying experiences of patients with different types of leukemia. The study objectives were to: (1) get a broader picture of experiences through patient journey and how it varies depending on the form of leukemia (2) understand quality of life (QoL) and impact of acute leukemia (AL) on daily life (3) identify issues and extend of which that ALAN were unaware. Methods Developed by a panel of expert leukemia patient advocates, the questionnaire was tested twice and comprises sixteen sections with the aim to collect insight and understanding into the patient's experience, rather than the clinical perspective. The questionnaire consists of 200 questions (some with sub-questions) including HM-PRO, a validated QoL assessment tool in those with hematological malignancies. Patients completed the sections relevant to their type of leukemia. Data on relevant patient characteristics, such as gender, age, and countries of residence, were collected in the demographic section. The administration of the questionnaire was web-based, between 18 September2021 and 07 January 2022 and was made available in 10 languages. It was promoted by ALAN, CLLAN, CMLAN and member organizations via websites, newsletters, emails, and social media channels. Participation was on a voluntary basis therefore may not reflect the perspectives of all leukemia patients. The survey was designed to focus on the patient perspective. The aim was to ask questions that allowed understanding and insight into what the patient had experienced, rather than the clinical perspective. It did not seek to replicate the formal collection of scientific data such as patient preferences. We hypothesized that patients with ALs would report different experiences across their journey than patients with chronic leukemias (CLs). Results There were 2646 respondents: 16% (n=416) had a form of AL (AML (12% - n= 312); ALL (4% - n=104)); CL (79% - n=2098) (CLL (45% - n=1202); CML (34% - n=896)) and 5% (n=132) has other forms of leukemia , 56% (n=1426) were female, 56% were female (n=1426), 56% were within the age range 55-74 years old (range <16 to >85). Living situation, employment status and education levels varied. Responses were collected across 76 countries. Respondents were grouped into the designated World Health Organization regions; 66% (n = 1749) were from countries assigned to the European region. Time to diagnosis in AL was reported to be less than 2 weeks (64% of ALL and 56% of AML respondents), while in CL, it varied from less than 2 weeks to over 2 years, with the majority of patients being diagnosed in less than 3 months. Majority of AL patients (93% ALL, 87% AML) started treatment within less than a week after diagnosis, while it took over 2 years for 41% of CLL respondents. Chemotherapy remains the standard treatment option for ALs while targeted therapy tablets are used for CLs. ALs patients were more likely to report that their side effects had a large impact, compared to those with CL. Fatigue is reported as the main side effects across all the leukemia types, but AL patients seem to be more likely to experience loss of appetite, nausea, sleeping problems than CL patients. AL patients also appeared to be more worried about relapse compared to CL patients (more than 20% reported being "extremely worried). AL and CL patients reported similar physical behavior, social wellbeing, and emotional behavior, however, more than 50% AL patients reported feeling isolated (vs 35% in CLs) and more than 70% had to stop working because of their AL (vs 30% in CLs) with a greater financial impact. Conclusion Although the data reveals differing aspects of AL patients compared to the CL patients, to our surprise, in most areas investigated, they reported similar type of experiences. Where differences are observed, they can be explained by the nature of the disease, the urgency of treatment and the treatments currently available in AL. However, AL patients report greater feeling of isolation, large impact of side effects and impact of work life and finances. In addition, the data help draw attention to areas where further policy and campaigning work should be undertaken (e.g., emotional support) or where efforts should continue to happen (e.g. awareness of leukemia)