Section 10 - Cystic Fibrosis Clinical Care Pathway

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Contents Introduction 1. The Cystic Fibrosis Service ...................................................................................7 1.1 The unit personnel 1.2 The newly diagnosed patient 1.3 The CF outpatient clinic 1.4 The annual review 1.5 Chest x-ray scoring 1.6 The cystic fibrosis homecare service 2. Pulmonary Management....................................................................................17 2.1 Physiotherapy 2.2 Antibiotic therapy 2.3 Nebuliser therapy 2.4 Totally implanted venous access devices 2.5 Other pulmonary complications 2.6 DNase therapy 2.7 Oxygen therapy and assisted ventilation 3. Gastrointestinal Management...........................................................................39 3.1 Nutritional management 3.2 Pancreatic insufficiency 3.3 Growth and puberty 3.4 Gastrostomy tube feeding 3.5 Meconium ileus 3.6 Distal intestinal obstruction syndrome (DIOS) 3.7 Fibrosing colonopathy 4. Psychosocial Services..........................................................................................54 4.1 Psychological services 4.2 Social services 5. Genetic Services ..................................................................................................61 5.1 Gene typing of the affected individual 5.2 Carrier testing of adult relatives 5.3 Consanguineous marriage 5.4 Carrier testing of siblings 5.5 Prenatal screening 5.6 Population screening 5.7 Neonatal screening 5.8 Essential information 4
6. Lung Transplantation ...................................................................66 6.1 Patient selection 6.2 Surgical aspects and post-operative management 6.3 Survival and complications 7. Additional CF Related Complications..........................................71 7.1 Cystic fibrosis related diabetes 7.2 Liver disease 7.3 Oesophageal varices 7.4 Liver transplantation 7.5 Arthropathy 7.6 Nasal polyps 7.7 Sinusitis 8. Pharmacopoeia .............................................................................80 9. Useful Names and Addresses ......................................................86 10. Further reading.............................................................................89 5
Page 1: Handbook for the Management of Chil
Page 6 and 7: Introduction Cystic fibrosis (CF) i
Page 8 and 9: 1.2 The Newly Diagnosed Patient The
Page 10 and 11: 15 or 16. Young adults are usually
Page 12 and 13: • Urine dipstick and analysis Inv
Page 14 and 15: Chrispin-Norman Chest X-ray Scoring
Page 16 and 17: at schools and nurseries, children
Page 18 and 19: prescription of twice daily chest p
Page 20 and 21: e reviewed at each clinic visit. Tr
Page 22 and 23: inclination of the device from the
Page 24 and 25: intensive physiotherapy prior to su
Page 26 and 27: Pseudomonas aeruginosa The acquisit
Page 28 and 29: epidemic fashion within individual
Page 30 and 31: When should it be prescribed? a) In
Page 32 and 33: 2.3.1 On the ward It is unnecessary
Page 34 and 35: only be used on children who are ab
Page 36 and 37: 2.5.2 Haemoptysis Occasional streak
Page 38 and 39: weeks then long term maintenance th
Page 40 and 41: ) Increased energy expenditure Ther
Page 42 and 43: Vitamin K is not routinely given as
Page 44 and 45: d) Post-Intestinal Surgery Infants
Page 46 and 47: For cases of persistent steatorrhoe
Page 48 and 49: • Children may be reluctant to go
Page 50 and 51: The type of feed chosen will depend
Page 52 and 53: Other conditions which should be co
Page 54 and 55:
Section Four: Psychosocial Services
Page 56 and 57:
physiotherapy, self managed techniq
Page 58 and 59:
ICA does not depend on contribution
Page 60 and 61:
send them a certificate (Form AG2 o
Page 62 and 63:
upon a clinical assessment, the fam
Page 64 and 65:
5.6 Population screening There has
Page 66 and 67:
Section Six: Lung Transplantation 6
Page 68 and 69:
6.2 Surgical Aspects and Post-Opera
Page 70 and 71:
Other complications following heart
Page 72 and 73:
Diagnosis In the presence of glycos
Page 74 and 75:
7.2 Liver Disease Introduction Path
Page 76 and 77:
a catastrophic event and may requir
Page 78 and 79:
7.5 Arthropathy Cystic fibrosis art
Page 80 and 81:
Section Eight: Pharmacopoeia Drug I
Page 82 and 83:
Gastrointestinal Individual Oral Do
Page 84 and 85:
Mucolytics Individual nebulised dos
Page 86 and 87:
Section Nine: Useful Names and Addr
Page 88 and 89:
OR For antibiotics order Pari LC Pl
Page 90:
Cystic Fibrosis Trust Booklets •
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Section 10 - Cystic Fibrosis Clinical Care Pathway

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