Section 10 - Cystic Fibrosis Clinical Care Pathway

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Introduction Cystic fibrosis (CF) is a life long illness and requires the care of a multidisciplinary professional team for successful management. A team approach ensures that the care provided for a patient with CF is both comprehensive and individualised, and aims to provide as normal a life as possible for the affected child and their family. The principles of therapy are to anticipate and minimise any physical, emotional and social problems that may develop, to prevent progressive lung disease and nutritional deficiency as far as possible and to achieve optimal growth and psychological development. However there is no single, ideal regimen of care and controversy still exists in several areas of management. This handbook is designed for health care professionals who deal with children who have CF and comprises the protocols adopted by the Cystic Fibrosis Unit of Great Ormond Street Hospital (GOSH). It is hoped that these guidelines will provide a uniformity to the therapy given by the various team members, both within the hospital and in our shared care clinics. It is also anticipated that answers to management queries not specifically in one’s own area of expertise will be available in the absence of the relevant team member. Our handbook deals with common management problems in CF and does not purport to be a comprehensive text on the subject; developments, advances and consequent changes to protocols are anticipated. Comments and criticisms regarding omissions and therapies are encouraged. 6
Section One: The Cystic Fibrosis Service 1.1 Unit Personnel Cystic Fibrosis Unit Great Ormond Street Hospital for Children NHS Trust Great Ormond Street London WC1N 3JH CF Clinic: Tel: 020 7405 9200 Fax: 020 7813 8514 Consultants Robert Dinwiddie Ext 5453 Colin Wallis Ext 0647 Adam Jaffe Ext 5404 Senior Physiotherapist Esta-Lee Tannenbaum Bleep 0464 Dietitian Tanya Thomas Bleep 0300 CF Clinical Nurse Specialist Denise Sheehan Bleep 0581 CF Clinical Nurse Specialist Charlie Dawson Bleep 0154 (homecare) Mob 07979 770292 Clinical Psychologists Mandy Bryon Ext 0501 Melissa Sanchez Ext 0434 Lung Function Laboratory Aidan Laverty Ext 5372 John Rae Ext 5456 Fareeama Subar Ext 5456 Emma Scrase Ext 5456 Secretary & Appointments Carol Wragg Ext 0431 Research / Database Coordinator Ammani Prasad Ext 2328 CF Research Fellow Bleep 0699 CF Staff Grade Respiratory ward staff: Bleep 0779 Ward Sister Maureen Ferguson Ext 5402 Registrar Bleep 0635 SHO Bleep 0648 Badger Ward Transplant Team Ext 8813 Consultant Paul Aurora Ext 2377 Nurse Specialist Pauline Whitmore Bleep 0600 7
Page 1: Handbook for the Management of Chil
Page 4 and 5: Contents Introduction 1. The Cystic
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
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ICA does not depend on contribution
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send them a certificate (Form AG2 o
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upon a clinical assessment, the fam
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5.6 Population screening There has
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Section Six: Lung Transplantation 6
Page 68 and 69:
6.2 Surgical Aspects and Post-Opera
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Other complications following heart
Page 72 and 73:
Diagnosis In the presence of glycos
Page 74 and 75:
7.2 Liver Disease Introduction Path
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a catastrophic event and may requir
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7.5 Arthropathy Cystic fibrosis art
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Section Eight: Pharmacopoeia Drug I
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Gastrointestinal Individual Oral Do
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Mucolytics Individual nebulised dos
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Section Nine: Useful Names and Addr
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OR For antibiotics order Pari LC Pl
Page 90:
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Section 10 - Cystic Fibrosis Clinical Care Pathway

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