Implementation of key educational packages into a regional Cystic Fibrosis Centre
S.Hill, University Hospitals of Leicester  Cystic Fibrosis Centre, Leicester, UK

Background:  With advances in Cystic Fibrosis knowledge and treatment comes improved quality and quantity of life. This demands in-depth planning and education to meet current and future needs of children and their families.
Currently within the Leicestershire Cystic Fibrosis centre we care for approximately 70 patients from birth to transitional age.  Despite education being provided in our centre it was recognised that this required formalising and developing. It was apparent that education was also needed for allied health care workers not directly involved with the care of children with cystic fibrosis.
Aim: To implement and evaluate educational packages within our Cystic Fibrosis centre.
Implementation: Feedback from families, children, ward staff and team members highlighted areas of need. Trial packages were developed and introduced in the following areas:
Parent / carer information and teaching evenings
Home Intravenous Administration booklet (2000 Leics)
Self medication programme (2000 Leics)
Disability Living Allowance booklet (1998 Leics)
  Partnership In Care  school study days (1999 Leics)
Teaching / Play box for longline and portacath education
Bi-annual newsletter
Evaluation of the packages has enabled some to be incorporated into the CF team s ongoing educational programme. Others remain at the pilot stage of development. All are readily available in clinic, ward and community settings.
Our  Partnership In Care  study days have been attended by 228 School Carers over a 2-year period. All participants returned evaluation questionnaires.  The respondents all found the program to be valuable.
Conclusion: We have successfully developed and implemented educational packages into our service. These encompass many areas of CF care, and have proved of benefit to our children, families and allied health care workers.

Do cystic fibrosis patients understand their drug therapy?
J. Crawley, Regional Adult CF Unit, Liverpool, UK

Patients with CF need to take many different routine drug treatments, either as therapy for CF complications or to replace deficiencies associated with the condition. It is well known that compliance with complicated drug therapy is poor, and to investigate the reasons for this we audited the drug knowledge of a group of 24 consecutive CF patients admitted to our adult CF unit over a 1 month period. All were interviewed by the CF pharmacist who recorded the different medications taken and elucidated whether they understood the reasons for each therapy.
In terms of replacement therapy, 23 (96%) were taking pancreatic enzymes and all knew the reasons for this. 22 (92%) were taking multivitamin capsules BPC and 13 of these (59%) did not know why. Also, 16 were taking vitamin E supplements and 10 of these (62%) did not know why.
In terms of treatment for disease, of the 22 (92%) who took regular antistaphylococcal antibiotics, only 7 (32%) understood why. 9 (38%) were using dornase alfa, and all understood the reason for using it and when to use it in relation to physiotherapy. 16 (67%) were on regular short acting bronchodilator therapy (inhalers or nebulisers), and only 1 (6%) did not know the reason for such therapy.
Conversely, 11 (46%) were using inhaled steroids, and only 3 (27%) of these knew what they were for and why they were taking them. Furthermore, of the 10 (42%) on regular oral steroids, only 7 (70%) knew what it was for.
Thus, we have shown that frequently adult CF patients are not aware of the reasons for many of the therapies that they are taking, and this may in part explain why compliance is often poor. It may be of relevant that patients appeared to understand the need and use of  rescue  therapies (such as inhaled bronchodilators and pancreatic enzymes) rather than those with a prophylactic role (such as vitamin supplements). Our CF pharmacist has now embarked upon an active program of patient education into their routine drug treatment.