Evidence Based Advocacy
Evidence-based advocacy: Demonstrate impact of active signposting / referring patients and families to patient organization at diagnosis


We experience skepticism from physicians towards role and benefits of patient organizations (PO) which then leads to a delay in patients reaching out to POs (for information, support, talk to other patients etc.).

In our global quality of survey, we have identified the key factors that relate to worse QoL in acute leukemia patients. The findings indicate key factors that healthcare professionals responsible for the care of acute leukemia patients should be aware of when designing support strategies, particularly age, gender, and socio-economic state.

The importance of social functioning in relation to acute leukemia patient quality of life, such as worries about friends and family, or feeling isolated, should also be included in considerations. Therefore, we encourage healthcare teams to provide or signpost patients to support groups and techniques to deal with social isolation and improving access to relevant financial help and advice.

We also know that the earlier a patient (and also his/her family) is engaged in his/her disease, understanding what is happening to them and is empowered to ask questions, the better the treatment response is as well as QoL, which ultimately reduces costs (hospitalization stays shorter, less side effects, etc.).

But we have to build the evidence base.

Why is this important to our community ?

In most cases, physicians and health care teams in general do not speak about patient organizations with their patients and families. When patients are diagnosed, they experience brain freeze – they are told they have cancer and get stuck on “cancer”. They do not hear anything afterwards and most probably feel overwhelmed by the information. They usually end up checking information on google.

It takes in most cases, a lot of time between time of diagnosis and first-time patients or families reach out to patient organizations, especially in acute leukemia.

Patient organizations offer a wide range of services for patients and families varying from disease information, education resources (booklets, webinars, podcasts, videos, etc.), support resources (support groups, online chat, peer-to-peer support, financial support, psychological support, carer support, etc.), and more. However, there are limited evidence showing the importance of support offered to patients / families.

This project is ran with Mayo Clinic and Leukemia & Lymphoma Society.