Emphysema today: news and old problems Bologna, 8 10 September 2011 The need for care in pulmonary emphysema and COPD Dr. Fausta Franchi Dr. Rosanna Franchi
Emphysema today: news and old problems Emphysema as part of COPD, represents a severe stage of the disease, and patient quality of life is very appreciably impaired and exacerbation may be lifethreatening Patient experiences moment of weakness; anxiety and depression are very frequent comorbidities Patient is physically and socially limited and need to be treated adequately to limit these negative effects on the evolution of the respiratory disease.
Emphysema today:news and old problems It appears that ensuring a better quality of life for these patients is almost as important as curing the disease Patients need Not only therapeutic and pharmacological treatment but also other kind of intervention (when disability worsen their quality of life): Psychological support Home care and assistance Oxygen therapy mechanical ventilation Respiratory rehabilitation (can be very helpful to optimize the patient s quality of life and teach the patient how to actively manage his or her care)
The importance of patient Associations The Mission of patient associations is: to improve health conditions, quality of life and the life expectancy of people with COPD and to safeguard the rights of patients, their families and caregivers to support the people affected by COPD disease and their families to tackle a chronic condition which trend is generally to worsen to advocate for the rights of patients, their families and caregivers
The Mission Primary prevention in order to eliminate risk factors (cigarette smoking, environmental pollution, incorrect life style) Secondary Prevention to avoid the start of the disease, encouraging the patient to use those preventive measures to avoid hospital bed days and comorbidities (The most important measure to slow the progression of the disease is to stop smoking and avoid all exposure to lung irritants)
The Mission Early diagnosis may be carried out through: - clinical and pulmonary functional test (Spirometry) - biological test (phenotype, alpha1 antitrypsin). Patient with the alpha1 antitrypsin deficiency are more likely to suffer from emphysema - Radiological measure (CT Scan measures of the lung function may be useful to assess the extent of emphysema in COPD patient and the stage of severity of the disease)* in order to adopt for each phase of the patient s disease the correct therapeutical measures (pharmacological, surgical and/or rehabilitation) * Shaker SB et al. 2009. Clin Respir J 2009, Jan 3(1)15-21. The Extent of Emphysema in patients with COPD
The Mission Management and care may be assured and based on the coordinated action of general practitioners, health care professionals, Nurses, respiratory therapists, lung function technicians, pulmonary specialists on ensuring treatment corresponding to scientific and ethical advancements on continuity in social and health assistance from home to hospital by creation of a network of structures that may ensure prevention, emergency treatment (UTIR) in the acute and post acute, home care assistance
The need for better communication Poor patient/clinician communication may be one of the factors why many patients are not achieving the level of possible treatment success Patients are not always supported to clearly explain their symptoms and doctors often lack the time to collect a detailed history
Strategies to carry out our mission Our Mission is realised through: - educational campaigns - production and distribution of informative material to improve knowledge and awareness of the disease at all levels, among citizens, political entities, administrators and health practitioners - advocacy the patients rights, by following up with the Institutions and actively promoting in all sections the request revision law D.M. 329/99
Value of patient s association The real value of patient association is to provide help to people being a point of reference for everyone concerned. Our Association is able to analyze the experiences of patients and to use this information to improve patient s rights, to understand the critical aspects of each situation and to find the most effective solutions
Program Partnership Effective alliances Cooperation Istitution Scientific Societies Clinicians Better knowledge of other association, their role and their activities Better relationship patient/clinician Telemedicine Continuity of management and care of the patient from early diagnosis to the most severe stage of the disease
Program The Association requests: - support by the Scientific societies and offers co-operation to them in order to agree the fundamental points explained above and to improve the development on: research on multipotent lung stem cells new treatment minimally invasive new medication
Program All of this is aimed: - at gaining a collective knowledge of the disease that would help recognising the dignity of the person affected by BPCO - at supporting the needs of their relatives - at allowing overcoming the differences in the assistance given to the patients
This is so that patients may live their condition without anxiety, diffidence and low self-esteem www.pazientibpco.it
References 1. Shaker SB et al. 2009. Clin Respir J 2009, Jan 3(1)15-21. The Extent of Emphysema in patients with COPD 2. Evidence for Human Lung Stem Cell. New England Journal of Medicine, May 2011 3. Han MK et al. Radiology 2011, Jul 25 - Chronic Obstructive pyulmonary disease exacerbation in the COPD gene study: associated radiologic phenotypes 4. Wedziche JA, Donaldson GC. Exacerbations of chronic obstructive pulmonary disease. 2003 Respir Care, Dec 48 (12) 1204-12 5. Kim WJ et al. CT metrics of airway disease and emphysema in severe COPD. Chest 2009 Aug 136(2) 396-404