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CF Incidence, Prevalence and Survival

CF Incidence, Prevalence and Survival. Carrier rate of 1 in 25 Incidence of 1 in 2,500 live births By 2002 the number of adult patients will equal or exceed the number of children (Elborn et al 1991) Carrier screening may influence numbers (Cunningham & Marshall 1998).

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CF Incidence, Prevalence and Survival

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  1. CF Incidence, Prevalence and Survival • Carrier rate of 1 in 25 • Incidence of 1 in 2,500 live births • By 2002 the number of adult patients will equal or exceed the number of children (Elborn et al 1991) • Carrier screening may influence numbers (Cunningham & Marshall 1998)

  2. Survival is now predicted to be 40 years for those patients born in the 1990’s

  3. Caseload (annual report 4/00 - 3/01) • 36 patients registered • 3 patients on active transplant list • 3 patients not suitable for transplant • 2 deaths

  4. Case Study • Diagnosed at 10 months with steatorrhea and LRTI • Stable until 13 when she required increasingly frequent IV’s • Pregnancy 1996 - TOP @ 16 weeks • Since 1998 she has suffered more frequent exacerbations and now requires IV’s monthly

  5. Oxygen dependent • Abnormal liver function • Occasional episodes of DIOS • Button gastrostomy inserted • Transplant assessment Dec 2000 • Overnight BiPAP from June 2001 • Difficulty in controlling pain and nausea

  6. Bi-lateral lung transplant Sept 2001

  7. Specialities Involved • Respiratory • Gastro-Intestinal • Obs & Gynae • GP/DN • Surgery • Transplant team • Child & Family Psychiatry

  8. Diabetic Control • Patients with CFRD - 5 • Glucose Intolerant patients - 2

  9. Intravenous Antibiotics • 206 in-patient days • 894 out-patient days

  10. Home Visits • Total number - 400 • Mileage - 11809

  11. Quality Issues • Performance indicator tool for home IV’s • Risk assessment of patients carrying out home IV’s • Introduction of segregated clinics from Jan 01

  12. Role of CFCNS • “National consensus standards for the nursing management of cystic fibrosis” march 2001

  13. Responsibilities • Advocacy • Clinical Management • Support and Advice • Education for patient, families and carers • Education, research and management

  14. Psychology • Dietetics • Physiotherapy & Community physio • Social work • Dr Paterson (bone densitometry) • Pain clinic • Rheumatology

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