Section 10 - Cystic Fibrosis Clinical Care Pathway

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OR For antibiotics order Pari LC Plus with Pari Medical Limited filter-valve set (white pot): London House For DNase order Pari LC Plus (yellow pot): 243-253 Lower Mortlake Rd Surrey TW9 2LL Tel: 020 8332 6513 Compressors: Porta nebs are ordered via out-patients and are serviced on a yearly basis by biomedical engineering. Multi-voltage and freeway-lite compressors are available for loan by the CF Nurse Specialists ext 2328. GASTROSTOMY TUBES As there are many types on the market they can be ordered via the Clinical Nurse Specialist in Stoma Care (bleep 609). Buttons: MIC-KEY Vygon UK Ltd Vygon UK Ltd skin level gastrostomy feeding set Bridge Road Cirencester Glos GL7 1PT Tel: 01285657051 Peg Tubes: Order Freka – PEG Standard gastric set 7901 051 Fresenius Ltd Christleton Court Stuart Road Manor Park Runcorn Cheshire WA7 1 ST Tel: 01928 579444 TIVAD Portacaths: Order Low profile titanium, Sims Portex Ltd venous access device: New Universal House Gripper needles 22 g 303 Chase Road Straight huber needles 22 g 1” Southgate London N14 6JB Tel 020 8882 9535 Fax: 020 8886 7757 88
Section 10: Further Reading General • Aurora P, Whitehead B, Wade A, Bowyer J, Whitmore P, Rees PG, Tsang VT, Elliott MJ, de Leval M: Lung transplantation and life extension in children with cystic fibrosis. Lancet 1999;354:1591-1593 • Bluebond-Langer M, Lask B, Angst D. Psychosocial aspects of cystic fibrosis. Arnold, London 2001 • Borowitz D, Baker RD, Satllings V. Consensus report on nutrition for paediatric patients with cystic fibrosis. J Pediatr Gastroenterol Nut 2002; 35(3): 246-259 • Davis PB. Cystic Fibrosis. Pediatric Reviews 2001; 22(8): 257-264 • DiWakar V, Pearsn L, Beath S. Liver disease in children with cystic fibrosis. Paediar Resp Rev 2001; 2(4): 340-349 • Hodson ME, Geddes DM. Cystic Fibrosis (2nd ed). Arnold, London 2000 • Lanng S. Glucose intolerance in cystic fibrosis patients. Paediatr Resp Rev 2001; 2(3): 253-259 • Prasad SA, Tannenbaum E, Mikelsons C. Physiotherapy in Cystic Fibrosis. J Royal Soc Med 2000; 93 (suppl 38): 27-35 • Ratjen F, Doring G. Cystic Fibrosis. Lancet 2003 Feb 22; 361: 681-689 • Roskin BJ, Cutting GR. The diagnosis of cystic fibrosis: a consensus statement. J Pediatr 1998; 132(4): 589-595 • Saiman L, Siegel J, and the Cystic Fibrosis Foundation Consensus Conference on Infection Control Participants. American Journal of Infection Control 2003; 31: 55-552 • Sokol RJ, Durie PR. Recommendations for management of liver and biliary tract disease in cystic fibrosis. Cystic Fibrosis Foundation Hepatobiliary Disease Consensus Group. J. Pediatr Gastroenterol Nutr 1999; 28 (Suppl 1): S1-13 • Stevens DA, Moss RB, Kurup VP et al. Allergic bronchopulmonary aspergillosis in cystic fibrosis - state of the art: Cystic Fibrosis Foundation Consensus Conference. Clin Infect Dis 2003; 37 (Suppl 3): 225-64 89
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Handbook for the Management of Chil
Page 4 and 5:
Contents Introduction 1. The Cystic
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Introduction Cystic fibrosis (CF) i
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1.2 The Newly Diagnosed Patient The
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15 or 16. Young adults are usually
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• Urine dipstick and analysis Inv
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Chrispin-Norman Chest X-ray Scoring
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at schools and nurseries, children
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prescription of twice daily chest p
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e reviewed at each clinic visit. Tr
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inclination of the device from the
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intensive physiotherapy prior to su
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Pseudomonas aeruginosa The acquisit
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epidemic fashion within individual
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When should it be prescribed? a) In
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2.3.1 On the ward It is unnecessary
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only be used on children who are ab
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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 90: Cystic Fibrosis Trust Booklets •
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Section 10 - Cystic Fibrosis Clinical Care Pathway

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