PATIENT ORGANIZATIONS WORKSHOP: Informed Cancer Patients and Their Needs in the Health Care System
Saturday, April 27, 2013, 14:00–15:00
Chairs: M. Ředinová, Czech ILCO, & P. Freij, Onkomaják
Contributing speakers:
- M. Fridrichová / 10 min
Psychology of cancer patients - M. Ředinová / 10 min
The Czech ILCO as patient organization protects interests of patients, reaching out a helping hand - O. Tellerová / 10 min
Stoma nurse – care for stoma patients, choice of stoma aids - K. Tyrpekl / 10 min
Physician as a patient with colorectal cancer - P. Freij / 10 min
Responsible approach to one's health – an informed patient
Most of cancer diseases, including colorectal carcinoma, represent serious and chronic health problem for many European citizens. Moreover, epidemiological parameters of colorectal cancer are threatening. High proportion of patients diagnosed in the stage of advanced disease and growing prevalence indicate necessity of comprehensive care covering all stages of the disease, including long-term follow-up and proper therapy at the time of disease relapse or progression. The disease itself, as well as its therapy, limits physical and mental status of a patient and inevitably decreases quality of life of the survivors. Thus, in addition to necessary prevention and screening focusing mainly on very early detection of precancerous lesions, the so called tertiary prevention and proper standards of patients’ follow-up must be emphasized as well. The role of patient organizations in these phases of care is evident. They have the potential to support newly coming patients and to help them to find a new balance in life with the chronic disease. In the Czech Republic, the patient organizations also must negotiate with health care managing authorities, including payers, to ensure necessary standard of support, e.g. for thousands of patients with stoma. Improper classification and indication for setting of stoma aids can substantially change market supply in this field and thus negatively influence the quality of life of the patients. Thus, well informed patient should:
- be in contact with some well managed patient organization
- follow general standards of care of his/her disease
- be aware of potential complications of his/her disease
- know all necessary aspects of cancer prevention due to the risk of disease relapse
- be regularly followed in the health care system in order to prevent serious complications
