Transcript CONTEXT - Centre de Référence Mucoviscidose de Nantes

A nurse specific monitoring, for CF patients taking ivacaftor
TM
(Kalydeco )
M.Kerbrat1, R.Fretay2, D.Chevalier3, F.You3, M.Chiffoleau4, A.Hubault4, C.Matras5,I.Berhault6, MT.Jousseaume6, MC.L’Abbé6, C.Pingon6, MC.Quillevere7, S.Paul7, K.Sery8, M.Idres9 1CF
6CF
reference centre Nantes-Roscoff, France; 2CF centre Vannes Lorient, France; 3CF centre Nantes, France; 4CF centre Angers, France; 5CF centre Tours France;
centre Rennes, France; 7CF centre Roscoff, France; 8St Nazaire Hospital, France; 9 St Brieuc Hospital, France
Acknowledgments to G.Rault1 and S.Hugé2
CONTEXT: A French coordinator nurses’ CF network group representing 9 CF centres (average 1000 patients). 4 meetings a year to
discuss nurses‘ practices, improve patient support, build and innovate together. One in 2014, focused on ivacaftor (KalydecoTM): 25 CF
patients, children (>6 years old) and adults with gating mutations, concerned by ivacaftor. Ivacaftor represents a significant breakthrough
and needs some administration conditions and long term compliance.
OBJECTIVES:
 To evaluate the ivacaftor taking in daily life: feeling of efficacy, compliance to ivacaftor, drug administration conditions, side effects
 To highlight the potentials changes with ivacaftor in patients’ life: quality of life, other treatments
 To improve nurses’ knowledge about ivacaftor and the optimal administration conditions
RESULTS: 18 completed questionnaires until now:
 Feeling of efficacy: 12 feel good with it (12); But 8 do not see any difference (Young patients already with few symptoms)
 Compliance: They rarely forget the intake: 15/rarely and 3/sometimes; All the patients want to continue the treatment
 Side effects: only a few (5)
 Changes: Some of them change usually treatment: decrease physiotherapy (4), pancreatic enzyme supplements (1), antibiotherapy (2),
stop salt (2) and aerosol (1)
 Drug administration conditions: One patient does not eat in the morning and take on an empty stomach!
DISCUSSION AND CONCLUSION: Those questionnaires give clues for a long-term monitoring:
 Not to trivialize the importance of treatment, to recall the modalities; To exchange and adapt the beside treatment; To evaluate and
preserve the long term compliance; To appreciate globally the effects and the impact on patient life.
 An approach, for the nurses, of educational tools of compliance, self-efficacy and quality of life
 A question: How asymptomatic children will manage this long-lasting treatment without feeling of improvement?
 Those questionnaires could be improved and used for other specific upcoming treatments
ECFC Juin 2015 Brussels
Acknowledgments to the association « Vaincre la mucoviscidose »
e-mail: [email protected]