We are pleased to share the findings from the 2024 CLL Advocacy Survey.

Please click the button below to access the Executive Summary:

Executive Summary

The purpose of the 2024 CLL Advocacy Survey was to highlight the unmet needs, key issues and collective experience of CLL patient advocacy groups and support CLL service providers globally. The survey was hosted online and 145 organisations from 70 countries were invited to participate via emails to representatives. The survey was available to complete for a period of 6 weeks from 23rd September to 31st October 2024. The survey received 55 responses from 42 countries.

CLLAN services and resources

Overall, there is a high level of engagement with the resources provided by CLLAN, with 89% (n=41) of organisations using at least one resource. Organisations were most likely to use the CLLAN website (65%, n=30) and the World CLL Day campaign materials provided by CLLAN (57%, n=26). All organisations who used CLLAN resources found them helpful to at least some extent.

When looking to the future, organisations were most likely to report they are likely or very likely to use regular updates via the “CLL Matters” newsletter (89%, n=39), CLLAN World CLL Day campaign materials (83%, n=29), regular updates via CLLAN social media (78%, n=33), and regular updates via the CLLAN website (76%, n=32). Organisations in LMIC were more likely to report intent to utilise the CLLAN resources in future, than HIC organisations.

When developing new resources and events, organisations would like CLLAN to prioritise medical updates on CLL (47%, n=22), patient education (38%, n=18), advocacy (36%, n=17), access to treatment, care and/or diagnostics (34%, n=16) and patient support (32%, n=15).

Access to CLL healthcare

It is well known that access to timely services and receiving clear information are central to high quality care. Importantly, 75% (n=33) of organisations agreed CLL patients have access to specialist doctors in their local country. Despite this, half (50%, n=23) agreed delayed / late diagnosis is an issue for CLL patients.

44% (n=19) of organisations disagreed that CLL patients have enough opportunity to take part in clinical trials, and 43% (n=19) disagreed that CLL patients are able to get support for emotional and psychological issues directly resulting from their CLL diagnosis / treatment through healthcare providers.

Access to CLL healthcare varied when comparing organisations in HIC and LMIC. For example, 83% (n=15) of LMIC organisations reported that delayed / late diagnosis is an issue for CLL patients, compared to 26% (n=7) of HIC organisations.

Current organisational services and resources

When responding to current service offerings, organisations were most likely to offer information-based services to patients and caregivers, such as educational events (Patients: 84%, n=41; Caregivers: 80%, n=32). Support based services for patients and caregivers, such as local support groups, were less common (Patients: 45%, n=22; Caregivers: 40%, n=16).

When asked about their organisational priorities, respondents were most likely to report their organisation primarily focuses on advocacy (59%, n=23), support for patients, families or carers (55%, n=23) and education (54%, n=20).

Volunteers were identified as the leading contributor to organisational success (51%, n=24). This was followed by networking / collaboration with other patient advocacy groups / organisations (47%, n=22) and grants / donations / sponsorships from pharmaceutical partners (40%, n=19).

Barriers to delivery of services and resources

Organisations identified key barriers to offering services (e.g., educational events, awareness campaigns etc) and resources (e.g., printed leaflets, websites etc). Insufficient financial resources (82%, n=37 for services; 80%, n=36 for resources) and a shortage of human resources, including staff and volunteers (76%, n=34 for services; 80%, n=36 for resources) were cited.

Experience of barriers to service delivery were notably different between organisations based in HIC and those based in LMIC. 100% (n=18) of LMIC organisations cited insufficient financial resources as a barrier to service delivery, compared to 69% (n=18) of HIC organisations.

Changing landscape of service provision since COVID-19

Since Covid-19, organisations were most likely to report an increase in the frequency at which they offer personal advocacy (59%, n=13), online group / chat or forum (59%, n=13) and healthcare professional education (59%, n=10).

Organisations were most likely to report an increase in the demand at which they currently offer personal advocacy (68%, n=15), welfare / financial support (67%, n=6) and online group / chat or forum (64%, n=14).

For 40% (n=17) of organisations, immune-related challenges have not impacted their ability to secure funding. However, as a result of immune related challenges, many organisations reported patients being more cautious about entering public spaces or events and the resulting impact on their emotional wellbeing. To address immune-related challenges, organisations are commonly investing in online information and communication methods.

Recommendations

The data collected has provided important information to help highlight the unmet needs, key issues and collective experience of CLL patient advocacy groups and support CLL service providers globally. The following recommendations have been created to inform where CLLAN and the wider CLL advocacy network should focus efforts, to further support CLL patients and caregivers in their service and resource provision.

CLLAN services and resources

Although the website is the most commonly accessed CLLAN resource, the resource hub and advocacy toolkit available on the website are not as widely used by organisations. With advocacy reported as a key organisational priority, further promotion of these resources may be beneficial to the patient organisations. Further to the awareness campaign, support on utilising these resources may be beneficial to support understanding and how to use them effectively. Additionally, it may be useful to gather further information from organisations on any barriers they have experienced which may be preventing them from accessing these resources.

When developing new resources and events, CLLAN should prioritise medical updates on CLL, patient education, advocacy, access to treatment, care and/or diagnostics and patient support.

Access to CLL healthcare

There is evident inequity in access to CLL healthcare, identified by organisations based in HIC and LMIC. CLLAN must work with partner organisations to address these inequities, such as working with pharmaceutical companies to promote CLL clinical trials in LMIC, understand and address the infrastructure limitations in LMIC, and working with clinicians to improve diagnostic pathways for CLL patients.

Current organisational services and resources

Whilst organisations cite support of patients, families or carers as one of the top organisational priorities, this is not reflected in the services offered. Support such as telephone support and buddy systems are not as widely offered when compared to information-based services. CLLAN could support with networking opportunities for organisations to share best practice for delivering more support-based services.

Additionally, CLLAN assisting patient organisations with campaigns to attract more volunteers, identified as the leading contributor to organisational success, will subsequently enable organisations to deliver a wider range of services and sustainability.

Barriers in delivery of services and resources

Organisations cited insufficient financial resources and a shortage of human resources, including staff and volunteers as barriers to offering the services and resources they would like to offer. This was especially pertinent for organisations based in LMIC who also reported skill set as a barrier to deliver services. Further promotion of existing materials, such as the advocacy toolkit and resource hub may address some of the challenges organisations are experiencing. Additionally, CLLAN should work with organisations to address inequity in resources and services across countries, for example, supporting organisations based in LMIC to develop skill sets with support on how to apply for funding grants.

Changing landscape of service provision since Covid-19

CLLAN should develop guidance and best practice for delivering online services to support organisations with the increase in demand. This can include, for example, how to successfully run online groups, chats or forums. Moreover, online services do not adequately replace face to face services. However, as detailed by organisations, CLL patients experience difficultly socialising or attending events due to their immunity status, leading to heightened anxiety and poor mental wellbeing. CLLAN should develop guidance and best practice for how organisations can deliver in person services for patients with weakened immune systems. By doing so, CLL patients can be confident that they are entering a space where precautions have been taken to protect their health.