Section 10 - Cystic Fibrosis Clinical Care Pathway

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15 or 16. Young adults are usually transferred to an adult CF clinic in their 16th year. We normally refer to the Royal Brompton Hospital, the London Chest Hospital and Papworth Hospital, although some children prefer to go to centres closer to their home. Transition clinics are held at GOSH in the out patient clinic with each of the above adult centres at least once a year. These are a multidisciplinary team clinic with both adolescents and parents invited. Informal visits can be arranged with the clinical nurse specialist at the adult centre during these clinics. The CF Clinic is held every Tuesday afternoon in Medical Outpatients (B) from 2pm onwards for about 12 patients. Every Clinic is attended by: Two Consultants Cystic Fibrosis Fellow Physiotherapist and Physiotherapy Assistant Lung Function Technician Dietitian Clinical Nurse Specialists (CNS) Clinical Psychologist Routine clinic procedure • Height and weight are recorded by the clinic staff. If there has been any weight loss urinalysis for glucose should be carried out. • Physiotherapy assessment including review of technique and sputum or throat swab is taken (please remember to sign and complete microbiology request form). • Spirometry and oxygen saturation (SaO2) are measured on all children over five years of age and SaO2 alone in those under five. • Dietary assessment and advice is available to all patients. • The clinical nurse specialists are available to discuss various issues with all children and families, including schooling, nebuliser equipment, disability living allowances, etc. • Patients’ notes are distributed between the consultants unless a specific patient request is made. Patients attending for annual review follow up should be seen by a consultant. • The assessment by the medical staff pays particular attention to the control of lung disease, the growth and development of the child, their nutritional status and to early intervention to minimise complications. • A clinical psychologist is available to see patients and their families in clinic. 10
Additional services Compressors - are ordered by the clinic staff. They are available on the same day. Portacaths - are flushed in clinic on a monthly basis by the clinical nurse specialists. If there is no CNS, then they can also be flushed on the respiratory ward, if the ward staff are given prior notice. Information - there is always a variety of literature on aspects of CF available in the clinic. Ask the clinical nurse specialists if you need anything specific. Information dispersal • A letter is sent to the GP and local hospital paediatrician following each visit. • The CF team meets to review patients after each clinic visit. Nutrition, lung function, microbiological results, psychological problems and changes in treatment are discussed and plans for future management are decided. Letters are then sent to GP’s with copies sent to local consultants, community nurses and other relevant health care professionals. 1.4 The Annual Review All CF patients are seen once a year for a detailed clinical review (Tuesdays in the CF Clinic or Wednesdays on Badger Ward). This annual review provides a full clinical assessment of an individual’s progress and disease status which includes the number of hospital admissions, courses of iv and oral antibiotics. It is also the aim to update the patient and their families on recent developments and therapeutic modalities and to discuss plans of future therapy for the forthcoming year. This comprehensive examination is undertaken against a pre-formatted checklist and includes the parameters detailed below. All information is entered into a computerised database which facilitates easy analysis of an individual’s health parameters over the years. All results obtained are discussed by the CF team and a detailed report sent out to the shared care centre and/or the GP. Baseline Data: • Height and centile • Weight and centile • Blood pressure & vital signs • Oxygen saturation 11
Page 1: Handbook for the Management of Chil
Page 4 and 5: Contents Introduction 1. The Cystic
Page 6 and 7: Introduction Cystic fibrosis (CF) i
Page 8 and 9: 1.2 The Newly Diagnosed Patient The
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
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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
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6.2 Surgical Aspects and Post-Opera
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Other complications following heart
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Diagnosis In the presence of glycos
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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
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Section 10 - Cystic Fibrosis Clinical Care Pathway

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