Transcript Document

A nurse specific monitoring
for CF patients taking
ivacaftor (Kalydeco )
TM
ECFC Brussels - June 2015
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
reference centre Nantes-Roscoff, France; 2CF centre Vannes-Lorient, France; 3CF
centre Nantes, France; 4CF centre Angers, France; 5CF centre Tours France; 6CF
centre Rennes, France; 7CF centre Roscoff, France; 8St Nazaire Hospital, France;
9 St Brieuc Hospital, France
Acknowledgments to G.Rault1 and S.Hugé2
Email: [email protected]
ECFC Brussels - June 2015
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
 Represents a significant breakthrough
 Needs some administration conditions and long term
compliance
ECFC Brussels - June 2015
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
ECFC Brussels - June 2015
Methodology
► 1.
Brainstorming: « What do we really know about
ivacaftor?”
► 2. Material
 Quality of life questionnaires (CFQ-R and Satmed-Q
Inserm)
 French questionnaire about compliance (« Auto
questionnaire ACGT comment dire »)
 Booklets about KalydecoTM
► 3.
Creation of a nurse specific monitoring for
patients taking ivacaftor and instructions (when, how
to use it …)
► 4.Test, feedback and adjustments
► 5.Effective establishing on the network
ECFC Brussels - June 2015
The nurse specific monitoring
for patients taking ivacaftor
2 questionnaires
and
Instructions
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Results
► 18
completed questionnaires until now:
 Feeling of efficacy:
► And
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:
► A patient
does not eat in the morning and take on an empty
stomach!
ECFC Brussels - June 2015
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 longlasting treatment without feeling of improvement?
►
Those questionnaires could be improved and used for other
specific upcoming treatments
ECFC Brussels - June 2015