Authored by Dr. Brian Koffman
The Bottom Line:
This large international survey demonstrated the need for greater participation in networked activities to build global capacity, share learning with stakeholders, and provide resources among charities that serve the chronic lymphocytic leukemia or CLL community. The survey has revealed gaps in support service provision in many countries and has emphasized and allowed the building online of a free global directory of patient-facing CLL resources.
Who Performed the Research and Where Was it Presented:
The survey was conducted by CLL Advocates Network (CLLAN), a vigorous global network of patient advocacy organizations that support those affected by CLL. My friend, Nick York, was the lead investigator and the author of this abstract review and serves on CLLAN’s steering committee that Nick chairs. CLL Society is a member organization. The results were presented at the American Society of Hematology (ASH) annual meeting in 2022 in New Orleans.
The survey aimed to understand support services and resources provided by nonprofit and charity organizations that support their local CLL community across different countries. The collected information created a global resource hub, a searchable directory of CLL support services and resources.
Methods and Participants:
The online survey was completed by patient advocacy organizations that specifically focused on CLL, blood cancer, or all cancers.
The survey asked about:
- Organization location and service details.
- CLL support, advocacy, and education services offered /not offered /not offered but want to.
- Types of information developed for different patient clusters and how these are delivered.
- Website links to support information services, resources, activities, and events.
The web-based 63-question survey was available in 7 languages and was completed between May 6th and August 2nd, 2021.
- The 57 respondents represented patient advocacy organizations in 40 countries.
- 54% were CLLAN members (MO), and 46% were non-members (NMO).
- 56% (n=32) were from Europe, but every continent was represented
- The most frequently reported barriers to providing services were:
- lack of human resources /staff /volunteers 74% (n=37),
- lack of financial resources 66% (n=33),
- lack of time 42% (n=21).
- NMOs provided a less complete range of services.
- While MOs were more likely to provide CLL-specific information, most information provided was not CLL-specific.
The survey results have enabled CLL Advocates Network to build the first global directory of CLL support resources & services by bringing together available information in a shared central database providing free access to the international CLL community. The resource hub was launched in June 2022 and is available on the CLLAN website. CLL Society highly recommends our readers from other countries access this valuable resource.
Not every country has access to the CLL-specific services offered by CLL Society and by a few other international nonprofits providing us with an opportunity to share resources with other less-resourced regions of the world through our work with CLLAN.
Links and Resources:
Watch my monologue on the ASH abstract:
To read the full 2022 ASH abstract, click on From Survey to Resource Hub: Chronic Lymphocytic Leukemia (CLL) Global Support Provision.
Stay strong. We are all in this together.
Brian Koffman MDCM (retired) MS Ed (he, him, his)
Co-Founder, Executive VP, and Chief Medical Officer
CLL Society, Inc.