Lack of Information Biggest Barrier for Lymphoma Patients

Mississauga, Ontario, Dec. 21, 2012 (GLOBE NEWSWIRE) -- Lack of basic, but crucial, information acts as a barrier to the proper diagnosis and treatment of lymphoma patients worldwide. This contributes to the high rate of delayed diagnosis found in the Lymphoma Coalition (LC) 2012 Global Patient Survey.

Crucial information on treatment options, clinical trials, treatment effectiveness, and lymphoma statistics is missing, incomplete or unavailable - an exhaustive search of online sources conducted by the LC has found.

This results in confusion and missed opportunities across global lymphoma communities, including a lack of empowering information for patients in member countries. This may affect treatment options, the ability of patient organizations to access newly diagnosed patients who are willing to explore clinical trials, patients' lack of understanding of treatment choices, and potentially misdiagnosis by medical professionals.

Lymphoma patients everywhere have the right to an understanding of and access to the latest evidence-based therapies and diagnostic protocol information.

LC launched the first ever lymphoma report card. The 2012 Lymphoma eInformation Project (LeIP) Report Card is a call for the lymphoma community to collaborate and ensure that consistent, accurate and constant flow of information be developed so that all parties involved in patient care, including patients themselves, can have access to information resulting in best standard of care.

2012 Global Patient Survey

The LC conducted a global patient survey in July 2012. The results of the 17-country, 1600-participant survey were more alarming than anticipated. Delayed diagnosis by first-line medical professionals was high with only 19% of respondents having been given a correct diagnosis of lymphoma with their initial symptoms. The most common incorrect diagnosis was a skin disorder, followed by a cold/viral infection, a glandular issue or no diagnosis at all.

Of those incorrect diagnoses, 41% were prescribed medication for the symptoms.

Time to correct diagnosis ranged from two weeks (21%) to 47% by the four-month mark, and 33% didn't receive a correct diagnosis until after four plus months from the initial doctor visit.

Making the diagnosis delay worse is the lack of awareness of lymphatic cancers and their symptoms in the general public. Despite having symptoms, 57% of patients visited their doctors within less than six months of first experiencing symptoms. 26% took between six months and two years to visit their doctor with 11% taking more than two years.

2012 LeIP Report Card

LeIP was established to facilitate a process for the gathering and dissemination of credible, reliable and current information about lymphoma. LC will channel information worldwide to raise lymphoma awareness, improve understanding and ensure best practice management of lymphomas.

Lymphoma Coalition

The Lymphoma Coalition (LC) is a global network of 56 lymphoma patient organizations with a vision to free the world of lymphomas.

LC supports its member organizations to affect change by raising the awareness, improving the understanding, and ensuring best practice management of lymphomas, leading to best patient care around the world with the end goal of saving more lives.

LC is endeavoring to accomplish its mandate within the context of a rapidly changing environment for which information on both a global scale and at the local level are available for all member countries. This is essential to understanding best practice with the end goal of saving more patient lives.


Lymphoma, a complicated cancer of the lymphatic system, made up of 65+ subtypes, can easily be mistaken for the cold or flu. Symptoms can include drenching night seats, persistent unexplained fever, swollen glands, persistent coughing, breathlessness, persistent itching, rash, fatigue, dizziness, headaches and weight loss.

To download the complete 2012 LeIP Report Card and its supplemental reports and charts, visit the Lymphoma Coalition website at under Global Information.

To download the complete press kit, visit under Media, or you can click here.

CONTACT: Karen Van Rassel Executive Director Lymphoma Coalition Sandra Grilo Tenaglia Communications Lymphoma Coalition Source:Lymphoma Coalition