In 2021/2022 the CLL Advocates Network (CLLAN) in partnership with the Acute Leukemia Advocates Network (ALAN) and the CML Advocates Network (CMLAN) ran a Global Leukemia Patient Experience Survey to create a global picture of the key issues, experiences and unmet needs of leukaemia patients. This multi-country survey collected key data on important areas of patient experience such as diagnosis, treatment, patient preferences, quality of life and also impact of the COVID-19 pandemic on patient experience and outcomes. It targeted adult patients with leukemia and was made available in 10 languages. This was an international patient group-led initiative.

OBJECTIVES

• To identify priority topics, assess areas of change including (but not limited to) COVID.
• To understand the issues and gather information on the current and emerging treatment landscape, experiences and quality of life (QoL)
• To create further evidence about patient experience and quality of life at different points in the leukemia patient journey.
• To aid patient advocates and advocacy groups to inform and influence stakeholder communities, industry, and policy makers – enabling evidence-based advocacy.
• To help to identify and communicate the varying levels of information, care and support available to patients.

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 consisted of 200 questions (some with subquestions) 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 September 2021 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.

RESULTS

There were 2646 respondents with different types of leukemia: acute myeloid leukemia (n=312), acute lymphoblastic leukemia (n=104), chronic lymphocytic leukemia (n=1202), chronic myeloid leukemia (n=896) and other types of leukemia
(n=132).

SURVEY REPORTS & RECOMMENDATIONS

The results of the 2021/22 CLL patient experience survey and the 2022 carer experience survey were combined on one single report: The Global Patient and Carer Experience Survey Report 2021-2022. Click below to access the Executive Summary and the Full Survey Report.

Survey Comparison: In August 2023, CLLAN launched a comparison analysis of the CLLAN 2021 Resource Mapping and Unmet Needs Survey vs. this 2021/22 CLL patient experience survey and the 2022 carer experience survey. Click here to access the Executive Summary, the Full Report and the Presentation of Key Findings of our Survey Comparison Report.

ABSTRACTS & POSTER

Joint ASH 2022 abstract of the 2021/2022 Global Leukemia Patient Experience Survey:

Zack Pemberton-Whiteley et al: Experience and Views of Leukemia Patients: A Global Survey. Blood (2022) 140 (Supplement 1): 5258–5259. https://doi.org/10.1182/blood-2022-163309, https://ashpublications.org/blood/issue/140/Supplement%201

Joint ASH 2022 poster:

Click here to access the poster in .pdf

Another abstract based on the 2021/2022 Global Leukemia Patient Experience Survey and entitled “Differences in Experiences Reported By Patients with Acute and Chronic Leukemia: A Global Survey”  was submitted to ASH 2022 by our colleagues from ALAN. Although not accepted for poster presentation, it was published online on the ASH abstracts site in the November 2022 supplemental issue of Blood and became part of the permanent ASH and Blood abstracts archive:

Zack Pemberton-Whiteley et al: Differences in Experiences Reported By Patients with Acute and Chronic Leukemia: A Global Survey, Blood (2022) 140 (Supplement 1): 13273–13275. https://doi.org/10.1182/blood-2022-163466, https://ashpublications.org/blood/article/140/Supplement%201/13273/487390/Differences-in-Experiences-Reported-By-Patients

Thanks to patients worldwide who took the time to complete this survey and – by that – helped us greatly in identifying areas within the patient journey where opportunities exist to improve patient care and experiences.

Acknowledgement

We’d like to thank ALAN for taking the lead in delivery of this project and the sponsors that have supported this important work.