Ukrainian Association for helping patients with lymphoproliferative diseases: Patients support care program

Abstract

Background: Treatment patients with cancer, including chronic lymphoproliferative diseases (CLPD), includes not only special therapy, such as surgery, chemo- and radiation therapy, as well as psychological and social support to this group of patients. With this goal, the first Ukrainian Association for helping Patients with Lymphoproliferative Diseases (UAPLPD) was founded in 2006. Methods: 1) To cooperate with various institutions and doctors who treat patients with CLPD. 2) To create programs which promote social assistance and protection for patients with CLPD 3) To create an appropriate financial framework for solving diagnosis and treatment difficulties. Results: Currently, there are 18 centers in 24 regions of Ukraine and 1000 members (25% of health professionals and researchers and 75% of patients and their family members) in UAPLPD. Each year, the number of association members is growing rapidly Since 2006, the association has been carrying out a lot of activities aimed to support patients, their relatives and of course, doctors. Nowadays, we have 6 ongoing projects: “Lymphoma day”, “Psychological help for patients and relatives”, social project with Ukrainian pop-stars “I will survive. . .”, program which help to reduce prices for expensive drugs “Support patient”, “Art against cancer” and “Survivors day”. Within the framework of all projects, the association provides a lot of charity concerts, art exhibitions, shoot video for promo-actions, provide art-therapy, therapeutic horse riding. There are also many educational events for patients and doctors. The UAPLPD pays attention to the assistance for diagnosing and treating patients and partially allocates money for reagents purchasing, perform PET/CT scans for free to over 40 patients annually and could cover cost-effective treatment. The Association has printed out a lot of informational material such as patient brochures on nutrition, physical therapy with our patients' stories and examples. We update and edit this information annualy, including the scientific editions as well. The latter one include guidelines for diagnostic and treatment multiple myeloma, anemia, the evaluation of response after treatment in patients with lymphoma. Since 2015, a psychologist has been working for a full time at the oncohematology department. Conclusions: The work of the Association for helping patients is very important and necessary for effective treatment and patient rehabilitation.