Review - regular three monthly review
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Regular clinic review (minimum three monthly)
Children and young people with Cystic Fibrosis (CF) in New Zealand require:
- an outpatient review at a minimum four times a year. Can be seen more often if needed; e.g. newly diagnosed, worsening or change in disease or change in management or treatments.
- access to health professionals specialising in CF management: doctor, physiotherapist, dietitian and nurse. In larger centres with more than one CF consultant a lead consultant should be identified.
- access to:
- diagnostic facilities (e.g. lung function, radiology and microbiology services)
- clinical psychologists
- social worker and/or Cystic Fibrosis field worker
- play specialists
- other specialists/teams (eg endocrine, gastroenterology, ent, cardiothoracic, general surgery, rheumatology)
- infection control policies. Children/young people with CF should not be in close contact with each other in clinic waiting areas, radiology and laboratories etc. See Infection Control Recommendations for more information.
- a nurse specialist or clinic nurse to organise and coordinate the outpatient clinic review with outpatient facilities, staff and families, diagnostic tests and other medical and allied health reviews as required.
- a letter following the outpatient review for the GP and family. The letter to include progress to date, change of treatments/medication and recommendations. From 13 years of age all young people will receive a copy of the clinic letter. A copy of the outpatient letter should also be sent to regional CF teams or shared care Consultants.
Outpatient clinic review appointment
All families should have received an appointment letter and if possible, a reminder text or phone call a few days before their appointment. Where possible the clinic review should coincide with appointments or testing with other specialties to minimise time spent at the hospital, with reminders sent if special tests or samples need to be done before the appointment. Family members are encouraged to accompany the child or young person and their parents/carers.
Outpatient multidisciplinary Cystic Fibrosis (CF) care
The following health professionals with CF knowledge and experience should be available at each clinic review:
- Doctor: either Respiratory/CF paediatrician or registrar with overview from lead consultant - should be seen at each clinic visit
- Nurse specialist or clinic nurse: should be seen at each clinic visit to provide: advocacy, education and support for home and school, particularly at important times - eg when newly diagnosed, admission to hospital, transition, change of treatments and medications, etc.
- Physiotherapist: (may not necessarily see at each outpatient review) to assess physiotherapy airway clearance techniques, respiratory samples, nebuliser therapy, posture, exercise and urinary incontinence.
- Dietitian: Reassessment should follow the Nutrition Care Process and Terminology (NCPT) pathway. Areas covered include assessment of previous nutritional goals and advice provided and where applicable topics listed under the annual review section.
- Respiratory physiologists: perform lung function at each clinic review, to start at 5 - 6 years of age. Bronchodilator and nebulised drug challenges should be performed at either clinic appointment or at a time to suit families and the department.
- Health professionals from other services e.g. endocrine, gastroenterology, psychology, play specialists etc to be available either at a CF clinic appointment or a separate appointment may be required.
- Social worker or Cystic Fibrosis Field Worker from CFNZ Association. Assist with practical, psychosocial and financial support when needed.
- Infants under 2 years: bare weight on infant scales, supine
length on paediatric measuring board and head circumference.
Older children, adolescents and adults: weight in light clothing on electronic scales, height measured on stadiometer (without shoes)
- Lung function measured at each clinic review in child/young person over 5 years of age
- Oxygen saturation measured on pulse oximeter at annual review and as required
- Sputum or cough suction samples for microbiology collected at each visit
- Urine tested for glucose if loss of weight or on oral steroids
- Except for the annual review, chest x-ray, ultrasound, blood testing and DEXA are only performed if there is a clinical need
From each clinic appointment data entered by identified team member / members
Document last updated: July 2017
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