CLL Canada’s Information and Resource Centre Helps Patients and Caregivers Turn Information into Informed Decisions

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Helping patients make informed decisions can significantly improve their physical and mental quality of life. This is particularly true for patients diagnosed with complex diseases, such as Chronic Lymphocytic Leukemia (CLL). In honour of World CLL Day, CLL Canada launched its Information and Resource Centre to help patients, and their caregivers, navigate online information through frequently asked questions at each stage of the CLL journey.

“Our mission at CLL Canada is to provide education to improve and extend the lives of Canadians affected by CLL. We hope launching this site will help patients, and the people around them, make sense of available resources and find exactly what they need,” said Raymond Vles, Chair of CLL Canada.

The Importance of Navigating Online Information

Now more than ever, patients are becoming active participants in making choices for their health. A simple, “watch and wait” instruction from the doctor can open the gates to a flood of questions. While the internet has made information more accessible, the search for answers can quickly become counterproductive due to the abundance of online sources. Without appropriate guidance, patients may not be able to distinguish useful, relevant information from information that is outdated and discouraging. This can negatively impact mental wellbeing, as well as the effectiveness of disease management choices.

By giving patients and their caregivers the tools to find useful information, healthcare professionals can help turn online information into informed decisions.

Living Well with CLL

CLL is the most common leukemia in adults with more than 2,200 Canadians diagnosed every year. The impact of a CLL diagnosis goes beyond physical symptoms, such as fatigue and frequent infections. Living with CLL requires patients to adjust their daily habits to manage symptoms and deal with the impact of their illness on loved ones, finances and careers.

The Information and Resource Centre on CLL Canada explores 100 relevant topics through eight defined stages from just diagnosed to support sources and living well – giving CLL patients a roadmap to reliable online sources.

Benefits of CLL Canada’s Information and Resource Centre

Understanding the diagnosis: By having access to reliable information, patients can better understand the nature of the disease, how it is managed and available treatment options – facilitating control of the disease through optimal medical and lifestyle decisions.

Helping physicians support patients: Patients can work more effectively with physicians if the patients are well-educated on the disease, allowing patients and healthcare professionals to become true partners during the treatment journey.

Reducing stress and anxieties: Whether it is discomfort from symptoms, financial burden, fears for the future or mental health complications, worries and uncertainties is inevitable when facing a cancer diagnosis. Having access to resources and knowing what to expect from the diagnosis will alleviate stress and anxieties, improving the patient’s mental quality of life.

Connecting with community: The impact of CLL is best understood from the perspective of patients. Depending on their age and life circumstances, patients need different types of support and insights from local CLL communities to transition into living with CLL and best live with the disease.

Reducing the cost of illness: Loss of income is a common issue associated with cancer patients and their families. Helping patients seek financial support will benefit their physical and mental well-being.

Improving Relationships: Living with cancer affects more than the patient. Communication between patients and their loved ones can often be difficult. By having guidance on how to discuss the diagnosis and their needs, patients will receive better support from those around them.

Timely and relevant support: The Information and Resource Centre provides links to reliable, quality information based on common questions from patients. This assists patients in finding the answers they need as soon as they need it.

Patients need access to reliable information for disease management to be effective. By understanding their diagnosis, making informed decisions, and finding relevant support, patients can achieve a holistic approach in managing CLL – enhancing their quality of life, and that of their loved ones, at every stage of the CLL journey.

The Information and Resource Centre aims to help patients living with CLL, and their caregivers, make sense of available information on the internet. For more details, visit www.cllcanada.org.