From Survey to Resource Hub: Chronic Lymphocytic Leukemia (CLL) Global Support Provision

Background The CLL Advocates Network (CLLAN), a global network of patient advocacy organisations who support those affected by CLL, conducted a survey to understand support services and resources provided by organisations with CLL support in their service delivery remit across different countries. The purpose of the survey was to collect information to create a global resource hub, a searchable directory of CLL support services and resources.

Methodology Preliminary desktop research was carried out to identify organisations. These are patient advocacy organisations that are specifically focused on CLL, blood cancer or all cancers. They were invited to take part in an online survey.

The survey aimed to capture:

Organisation location and service details

CLL support, advocacy and education services offered / not offered / not offered but would like 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 provision of the 63 question survey was web-based, between 6 May and 2 August 2021, in 7 languages. Mapping of worldwide CLL support organisations was a part of a broader survey promoted by CLLAN via direct emails to 158 organisations in 69 countries identified during the desktop research phase.

Results 57 respondents represented patient advocacy organisations in 40 countries. 54% were CLLAN members (MO), 46% were non-members (NMO). 12% (n=7) were from the Asia Pacific region, 56% (n=32) from Europe, 16% (n=9) from Latin America, 5% (n=3) from Middle East and Africa, 11% (n=6) from North America. The highest number of member organisations responding were based in Europe. The highest proportion of non-member organisations were based in Latin America.

Most frequently provided services are summarised in the table below. Most frequently reported barriers to providing services were: lack of human resources / staff / volunteers 74% (n=37), lack of financial resources 66% (n=33), and lack of time 42% (n=21) (see image 1).

NMOs were less likely to provide services. The biggest difference in service provision was for CLL news and conference coverage (81% MO, 46% NMO), Conferences (61% MO, 27% NMO) and Input in writing and / or in person to government and regulatory organisations (61% MO, 31% NMO).

When asked what written information they provided, information targeting patients had the most responses, although more organisations direct this to collective blood cancer patients than solely for CLL patients. The next highest targeted groups are carers and the general public, closely followed by patient advocates. Healthcare professionals and the media are less well served in this regard (see image 2).

MOs are more likely to provide written information across the different groups. They were also more likely to provide CLL specific information.

Organisations were asked if they provide other information resources in the form of website pages, apps, or videos. Information targeting patients had the most responses, and mostly targeted to collective blood cancer patients rather than just CLL patients. Of these, website pages are used most frequently.

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 open access to the international CLL community. The resource hub was launched in June 2022 and is available here: https://www.clladvocates.net/cllresources/search-result-page/

Conclusion Survey responses have evidenced the need for participation in networked activities when building capacity and providing shared learning to stakeholders and provision of materials. The survey has revealed gaps in support service provision in many countries and has emphasised the importance of an open access central database of resources to provide information to those in countries who may not have them. The 2021 global survey has enabled the population of this searchable database with a significant number of resources and how they are provided to CLL patients around the world. However, during the desktop research, other patient advocacy organisations were identified that will require further follow-up to add specific content - this will be a constant process as organisations update their information and new organisations are found.

York:AstraZeneca: Other: Grant funding to the organization; Abbvie: Other: Grant funding to the organization; Gilead: Other: Grant funding to the organization; Janssen: Other: Grant funding to the organization; Lilly: Other: Grant funding to the organization; Beigene: Other: Grant funding to the organization. Baker:AstraZeneca: Other: Grant funding to the organization; Abbvie: Other: Grant funding to the organization; Gilead: Other: Grant funding to the organization; Janssen: Other: Grant funding to the organization; Lily: Other: Grant funding to the organization; Beigene: Other: Grant funding to the organization. Huntley:AstraZeneca: Other: Grant funding to the organization; Abbvie: Other: Grant funding to the organization; Gilead: Other: Grant funding to the organization; Janssen: Other: Grant funding to the organization; Lilly: Other: Grant funding to the organization; Beigene: Other: Grant funding to the organization. Rynne:AstraZeneca: Other: Grant funding to the organization; Abbvie: Other: Grant funding to the organization; Gilead: Other: Grant funding to the organization; Janssen: Other: Grant funding to the organization; Lily: Other: Grant funding to the organization; Beigene: Other: Grant funding to the organization. Schroeter:AstraZeneca: Other: Grant funding to the organization; Abbvie: Other: Grant funding to the organization; Gilead: Other: Grant funding to the organization; Janssen: Other: Grant funding to the organization; Lily: Other: Grant funding to the organization; Beigene: Other: Grant funding to the organization. Schuh:Janssen: Honoraria, Other: Non-educational grant; Roche: Honoraria, Other: Personal fees; AstraZeneca: Honoraria, Other: Non-educational grant; Gilead: Honoraria, Other: Personal fees; SERENOx: Membership on an entity's Board of Directors or advisory committees, Other: Founder of; Abbvie: Honoraria, Other: Personal fees; Oxford Nanopore Technology: Other: In kind contributions; Adaptive Biotechnology: Honoraria; Illumina: Other: In-kind contributions; Exact Sciences: Honoraria. Lamanna:Janssen: Consultancy, Membership on an entity's Board of Directors or advisory committees; AstraZenenca: Consultancy, Membership on an entity's Board of Directors or advisory committees, Research Funding; BeiGene: Consultancy, Membership on an entity's Board of Directors or advisory committees, Research Funding; Genentech: Research Funding; Mingsight: Research Funding; Octapharma: Research Funding; Pharmacyclics: Consultancy, Membership on an entity's Board of Directors or advisory committees; Loxo Oncology/Eli Lilly and Company: Research Funding; Abbvie: Consultancy, Membership on an entity's Board of Directors or advisory committees, Research Funding; Oncternal: Research Funding; TG Therapeutics: Research Funding. Gerrie:Sandoz: Honoraria; Janssen: Honoraria, Research Funding; AstraZeneca: Honoraria, Research Funding; AbbVie: Honoraria, Research Funding.