1. Improving medication adherence in children with CF – what a pharmacist can do Nanna Christiansen, Lead Clinical Pharmacist – Paediatrics, Barts Health NHS Trust

2. Jaimini Gohil, Suzanne Bishop, Nanna Christiansen Improving medication adherence in children with CF – What a pharmacist can do?

3. Background to Cystic Fibrosis Medical management requires wide range of medication: - digestive enzymes - vitamins and supplements - bronchodilators - mucolytics - inhaled, PO or IV antibiotics - anti-reflux - insulin

4. Adherence differs depending on –Complexity and number of medicines –Palatability –Immediate effect associated with intake –Duration of treatment –Time needed to take the medication –Patient factors Adherence rate around 50% can be expected for CF Adherence – what we know

5. Explore factors affecting medication adherence in paediatric CF patients Obtain patients’ opinion on pharmacist led interventions to help with adherence Aims

6. Methodology Cross sectional study Data collection using self-reported questionnaire Inclusion criteria: Between 11 to 16 years Confirmed diagnosis of CF Able to read and understand English Able to fill in the questionnaire themselves Exclusion criteria: Children in terminal phase of illness

7. Questionnaire Section A – Demographics Section B – Adherence to different medication – Children's perception of necessity of medication – Reasons for non-adherence Section C – Assessment of pharmacist led interventions

8. Results 17 eligible patients, 12 took part

9. Pancreatic enzymes 9 (81.8%) - necessary 2 (18.2%) – not necessary Helps me digest my food Helps my tummy aches I don’t notice a difference 63.6% 18.2% 9.1%

10. Vitamins & supplements 6 (50%) - necessary 4 (33%) – not necessary Helps me grow Makes me vomit Don’t see how it helps Can’t see how it makes a difference 8.3% 16.6% 58.3%

11. Inhaled medications 11 children on inhaled medication 64% (7) adherent, 36% (4) partially adherent 73% (8) - necessary 27% (3) – not necessary I don’t see a differenc e I feel better It liquefies my mucus Helps me clear bugs Makes me breath better

12. Factors affecting adherence Simply forgot: 41.7% - 58.3%Don’t like the taste – 16.7% Don’t want my friends to know 8.3%Not important – 8.3%

13. Pharmacist led interventions Interventions described in literature: Written (PIL) and oral communication (counselling) Telephone based follow up Reminder charts Pill boxes 58.3% 16.7% 25%

14. Medication information provision New medication – 67% receive information from doctor - 33% have not been given information Pharmacist at clinic – 50% ‘would not make a difference’ - 50% ‘would help in providing information on CF meds’ At home 25% 41.7% 33.3%

15. Conclusion Reported adherence levels slightly higher than in literature Unique information on children’s perception and preferred interventions In practice: Useful information for pharmacist in clinic Child friendly drug information provision

16. References Bucks RS, Hawkins K, Skinner TC et al. Adherence to treatment in adolescents with cystic fibrosis: the role of illness perceptions and treatment beliefs. J Pediatr Psychol, 2009;34:893-902 Haynes RB, Ackloo E, Sahota N et al. Interventions for enhancing medication adherence. Cochrane DatabaseSystRev.2008Apr16;(2):CD000011.doi:10.1002/14651858.CD0000 11.pub3. Haynes RBAckloo ESahota NCochrane DatabaseSystRev. Modi AC, Lim CS, Yu N et al. A multi-method assessment of treatment adherence for children with cystic fibrosis. Journal of cystic fibrosis: official journal of the European Cystic Fibrosis Society, 2006; 5:177-185. Segal TY Adolescence: what the cystic fibrosis team needs to know. J r Soc Med, 2008;101:15-27 Quittner AL, Espelage DL, Ievers-Landis C, Drotar D. Measuring adherence to medical treatments in childhood chronic illness: Considering multiple methods and sources of information. Journal of Clinical Psychology in Medical Settings, 7, 41-54.