Insights into patient needs
The CLL Advocates Network (CLLAN) is a global network of patient advocacy organizations dedicated to improving the outcomes of patients with CLL through collaboration with national organizations. Principles guiding the work of CLLAN include the support of local communities, sharing of best practices and advocacy for better care and access. Implementation of CLL-specific support in all countries is an important goal. At the same time, no direct support of patients and their families is provided; this remains in the scope of the national or regional advocacy associations and advocates.
Global multiple stakeholder surveys have been conducted and co-conducted by CLLAN to understand real-life experience and needs of patients and carers. Also, current gaps and opportunities are mapped to address equity, service and unmet need. At iwCLL 2023, Brian Koffman, MDCM, CLL Society, presented results from the CLL Patient Advocacy and Support Survey, the Global Leukemia Patient Experience Survey, and the Global Leukemia Carer Experience Survey. These online surveys were conducted between 2021 and 2022 with CLL patients, their carers, and support organizations from across the globe. Areas of interest included the provision of support services for CLL by patient advocacy organizations, access to CLL healthcare prior to the COVID-19 pandemic, and the impact of COVID-19 on the delivery of CLL care.
The investigators received responses from 1,202 patients, 137 carers and 57 support organizations across 40 countries. To understand and identify geographical impacts, the countries were segmented into low-and-middle-income countries (LMIC) and high-income countries (HIC).
Numerous gaps between LMIC and HIC
As the analysis showed, educational services were provided markedly more often in HIC, although awareness campaigns were conducted more frequently in LMIC. Regarding services that patient support organizations did not offer at the time of the survey but would like to offer, 42 % of responders from both HIC and LMIC mentioned clinical trials directories. Dr. Koffman noted that the need for news and conference coverage was much higher in LMIC (53 % vs. 8 % in HIC). However, lack of human resources/staff/volunteers was found to be a universal phenomenon (74 % for both LMIC and HIC).
Being able to afford care was definitely an issue for 32 % and 18 % of responders in LMIC and HIC, respectively. The question of whether enough approved therapies are available was answered with “no” in 58 % vs. 37 %. A huge difference emerged in terms of delayed diagnosis (Figure). Likewise, the results with respect to access to CLL specialist care centers and mental health resources after the CLL diagnosis favored HIC over LMIC, although the 18 % proportion of responders in HIC indicating definite availability of mental health care must be considered inappropriately low, as Dr. Koffman pointed out. Adequate opportunities to enter clinical trials are basically only available in HIC; here, this question was answered with “yes” in 21 % and with “yes, to some extent” in 50 %, while for LMIC, this was only 5 % and 11 %, respectively. Patients reported treatment delays due to the COVID-19 pandemic in 58 % vs. 38 % in LMIC vs. HIC.
Taken together, these responses suggest significant geographical disparities in patient access to best standard diagnostics and care, as well as support services. Patient organizations in HIC are more likely to provide wider services, especially for education and policy, than those from LMIC, which results in further gaps. Moreover, the unmet need of patients around their CLL diagnosis, treatment and support was higher in LMIC than in HIC, and delayed diagnoses were frequent. Dr. Koffman concluded that while support services are strong among patient organizations in LMIC, there is a need to build greater patient and professional educational services, grow involvement in policy decisions, and improve access to earlier diagnosis, a greater number of therapies and clinical trials.
Figure: Responses to three survey questions in high-income countries (HIC) and low-and-middle-income countries (LMIC)
Capacity-building program in Tanzania
William Frank Mawalla, MD, Muhimbili University of Health and Allied Sciencies, Daressalam, Tanzania, presented an update on the iwCLL Capacity Building Pilot Program that was initiated in Tanzania in March 2022 to improve treatment outcomes in patients with CLL. Four objectives have been defined that include promotion of practical training in flow cytometry and TP53 mutation analysis, training of clinicians and nurses, provision of clinical supervision and mentorship in multidisciplinary team meetings, and clinical research capacity building.
As Dr. Mawalla reported, tremendous achievements on some of these objectives have already been obtained. Laboratory scientists and hematologists have been trained in flow panel setting and interpretation, as well as NGS TP53 and IGHV mutation analysis. A clinical CLL guideline that reflects local needs and takes the diagnostic capacity into account is currently under review before being adopted into national guidelines. This went in hand in hand with the development of key laboratory SOPs on both immunophenotyping and molecular analysis.
Regarding clinical supervision and mentorship, weekly multidisciplinary meetings have been established with the aim of building a dedicated team that furthers the effort started by the program. The meetings involve laboratory scientists, clinicians, bioinformaticians, and students. In terms of clinical research capacity building, a REDCap database was developed that is hosted by the teaching hospital in Daressalam. To date, 32 patients have been enrolled. Dr. Mawalla expressed hope that this database will outlive the program and will continue to serve as a model for other malignancies beyond CLL. In addition, the experts actively engage in advocacy activities. Numerous dissemination events are being held both inside and outside of the university, and efforts are united to engage key stakeholders and supporting patient groups.
Source: Session “Global perspective on CLL management – real world data and patient experiences”, iwCLL 2023, 9th October 2023, Boston, USA
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