Cystic Fibrosis
Tia MartinRita Ripley
Debbie FieldsHeather Dorough
Kyle Kopytko
University of PhoenixJune 28, 2009
Introduction
History of CF
•
Causes and Treatments
Data on affected population
• 30,000 people in the US have CF
• 1,000 are babies
• Life expectancy 30s
• Approximately one in 31 people are carriers of the CF gene
http://www.netterimages.com/images/vpv/000/000/000/131-0550x0475.jpg
Data on affected population
• Infants show early signs
• Symptoms: diarrhea, greasy stools, persistent cough, poor growth http://graphics8.nytimes.com/images/2007/08/01/health/adam/18135.jpg
Data on affected population
Ethnic Background
Risk of CF Mutation
Risk of Child with CF
Caucasian 1 in 29 1 in 3300
Ashkenazi Jewish
1 in 29 1 in 3300
Hispanic 1 in 46 1 in 8000-9000
African American
1 in 65 1 in 15,300
Asian 1 in 90 1 in 32,100
Economic Impact
• The annual cost of medical care in 2009 averaged $18,300 and ranged from $9200 among patients with mild disease to $83,300 among patients with severe disease.
• Of total costs:• 47% were from hospitalization• 18% were from DNase (Pulmozyme)• 12% were from clinic visits• 10% were from outpatient antibiotics.
• When the observed costs were used to estimate the costs of medical care for the entire population of CF patients in the United States, these costs were estimated to be about $814 million per year in 2009 .
• (Cystic Fibrosis Foundation, 2009)
Cystic fibrosis is the most common life-shortening genetic disorder among white individuals worldwide. Estimates of the costs of medical care have been based on expert opinion rather than observed costs.
United States Budget for Cystic Fibrosis
Prevention in the Community
• Keep children’s immunizations up to date
• No SMOKING and avoid secondhand smoke
• Use airway clearance techniques• Eat nutritious meals that are high in
calories• Have regular checkups • Seek care from specialized CF
centers
Education Resources
• Books and Other Written Materials- “Spirit of Lo” An Ordinary Family’s
Extraordinary Journey….life’s dance on the edge
of mortality by Terry & Don Detrich
An Introduction to Cystic Fibrosis for Patients and Families by James C. Cunningham, M.D. and Lynn M. Taussig, M.D.
“Now That I Have CF” Information for Men and Women Diagnosed as Adults by the editors of Cystic Fibrosis Australia, national CF site
Online Education Resources
• www.healingwell.com
• www.CysticFibrosis.com
• www.cellscience.com
Conclusion
• Gene therapy• Allele-specific therapies• Pharmaceutical approaches
http://www.discovery-diagnostics.com/Nanoduct_Neonatal_Sweat_Analysis.asp
References
Detrich, Terry, & Detrich, Don (2003). The Spirit of Lo: An ordinary family’s extraordinary journey (1st ed), Tulsa, Oklahoma, Mind Matters.
Cunningham, James C., Taussig, Lynn M (2003). An introduction to cystic fibrosis for patients and families (5th ed), Bethesda, MD: Cystic Fibrosis Foundation, Birmingham, AL: Axcan Scandipharm Inc.
Palys, B, Palys, J.R., Widerman, E. (2003), “Now that I have CF” Information for men and women diagnosed as adults,Western Australia, Solvay Pharmecueticals.
Alma, L. (2008). Treating Cystic Fibrosis. About.Com. Retrieved June 20, 2009, from http://cycticfibrosis.about.com/od/treatment/a/CFtreatment.htm.
Hamann, B. (2007). Disease: Identification, Prevention and Control. McGraw-Hill. RetrievedJune 20, 2009, from The University of Phoenix, rEsource, Introduction to Health and Disease Trends.
Littlewood, J. (2202). The History of the Development of Cystic Fibrosis Care. The UK CF Trust. Retrieved June, 23, 2009, from http://www.cystic fibrosismedicine.com/htm/docs/CFText/historyof.htm.
North, S. (2008). Cystic Fibrosis: A Brief History of the Disease in the United States. Associated Content. Retrieved June 23, 2009, from http://www.associatedcontent.com/article/516097/ Cystic_fibrosis_a_brief_hisotry_of.htm?cat=37.
Cystic Fibrosis Foundation, 2009. Economic Impact. Retrieved: June 19, 2009. Website: http://www.cff.org
Images-http://www.discovery-diagnostics.com/Nanoduct_Neonatal_Sweat_Analysis.asp
Davis, Pamela B., 2005, Cystic Fibrosis Since 1938, Centennial Review, American Journal of Respiratory and Critical Care Medicine, Vol 173