ECFC Brussels - June 2015 A nurse specific monitoring for CF patients taking ivacaftor (Kalydeco) A nurse specific monitoring for CF patients taking ivacaftor.

Slides:

Advertisements

Similar presentations

¨ Dr Alain Garcia General Secretary of the Rare Diseases National Plan The second National Plan for Rare Diseases in France

Advertisements

Changes in Primary Care Organisation in France Health care Reform Towards multidisciplinary PC settings Best practices Prof. Marianne Samuelson Cyprus.

Liz Keenan Clinical Nurse specialist The National Hospital for Neurology and Neurosurgery, Queen Square.

Week 5- The Organisation of Health Services Part 2.

High Quality Youth Library Work Finnish path toward national Youth Library Quality Recommendation IFLA Satellite Conference ” year olds reading.

South West Experience. How we went about Different Perspectives Findings Questions But first …………………..

{ ADVERSE DRUG REACTIONS To ensure patient, family/caregiver and home health personnel are instructed to identify adverse reactions to medications and.

Enter System Name AdvancED TM External Review Exit Report Catalyst High School May 11,12,13, 2014.

To design and evaluate a generic tool to be used by pharmacy technicians, in order to ensure a consistent approach to patient counselling Blyth C, Menzies.

Dr Rachel Harrison Rose Garden Medical Centre Leith, Edinburgh

Cystic Fibrosis Theresa Brady January 9, Cystic Fibrosis What is it? What is it? How do you get it? How do you get it? How can you be tested for.

WHAT IS CQI? Contact the CQI Committee: (360)

1 FACILITY MONITORING October 30, 2008 Presenter: Theresa Gálvez, Chief Patients’ Rights Advocate Riverside County.

Alzheimer’s patients Caregivers Survey in Greece Dr Paraskevi Sakka Neuropsychiatrist Chairwoman, Athens Association of Alzheimer’s Disease and Related.

Inputs to a case-based HIV surveillance system. Objectives  Review HIV case definitions  Understand clinical and immunologic staging  Identify the.

Priory Fields Patient Participation Group Survey December 2011.

Baby Extra: “The birth of a baby is a unique moment in the life of parents. It makes parents more capable than they ever thought they would be.”

Backgrounders given to independent nurses during training: Background In France, while the setup of CF screening at birth in 2002, 49 specialized CF centres,

Following Your Treatment Plan. Taking your medication is an important part of your treatment. 2.

Overview of operational research in MSF Myriam Henkens, MD, MPH International Medical Coordinator MSF London 1st of June, 2006.

Role of the Oncology Research Team Carmen B. Jacobs, RN, OCN, CCRP.

Amany M. Shebl Professor Of Medical-surgical Nursing Dean. Nursing Faculty, Mansoura University, Egypt.

Improving The Patients Experience An Audit To Establish The Effectiveness Of A Dedicated Biologics Nurse Specialist Post Domini J Bryer, MA Biologics.

Results of Survey on Level Organization June 2012.

Service users at the heart of service evaluation USER FOCUSED MONITORING.

External Review Exit Report Springfield Platteview Community Schools March 2-4, 2015.

The multiregional Italian Thalassemia Registry: patient’s population changes and related iron chelation approach Laura Mangiarini 1 R. Padula 1, D. Bonifazi.

Are clinical leaders and staff prepared for accreditation? Survey on knowledge, expectations and areas for improvement in the County of Copenhagen Gut.

AHC Chicago D Poncelin1 AHC and Flunarizine : families point of view international survey report Dominique Poncelin President AFHA (french group.

In France, in 2002, together with the establishment of the CF newborn screening, 49 Specialized CF centres were labelised. In each one there are CF coordinating.

What do we need to know?  Details of drugs and medications  Frequency of administration  Compliance  Side- effects and allergies.

CAF-FCA – Promoting Apprenticeship and Trades Forum of Labour Market Ministers LMI Working Group Vancouver, BC – May 2004.

 Envisioning a Maryland Faith Community Health Network to support improved coordination of care Baltimore County Public Forum June 2015.

Frankfurt (Germany), 6-9 June 2011 SmartLife Guillaume & SmartLife Core Group – France – S1 – Paper SmartLife initiative in Focus.

Health Care Organization Customer Satisfaction Measures.

4th Quality Conference (4QC) Impact Assessment Study Rui Sousa, PhD Catholic University of Portugal Lisbon, 16 July 2007.

Using drug use evaluation (DUE) to optimise analgesic prescribing in emergency departments (EDs) Karen Kaye, Susie Welch. NSW Therapeutic Advisory Group*

Ebrictus Register St Coordination Strategies of Care across Stroke recovery: Proposals for Nursing Intervention in Primary Care Teresa Forcadell-Arenas.

CSAIO6 / CERN Staff Association 1 CERN Long-Term Care Scheme Conference of the Staff Associations of Internationals Organizations September.

The authors would like to acknowledge the families at the Children’s Hospital of Wisconsin Jane P. Pettit Pain and Palliative Care Center. For more information,

1/11/01 Pediatric trials for ARV experienced children Coleen K. Cunningham Epidemiology of treatment experience in pediatrics How does the smaller number.

Overcoming Clinical Inertia: A Randomized Clinical Trial of a Telehealth Remote Monitoring Intervention using Paired Glucose Testing in Adults with Type.

Standards and Competencies for Cancer Chemotherapy Nursing Practice in Canada: CANO/ACIO AN INTRODUCTION.

Collaboration for Success Preschool Screening, Assessment and Intervention.

Parent and Teacher Training Web Health Application for ADHD Monitoring Session 0 Behaviour Assessment and Intervention with WHAAM Application.

1 A Collaborative Approach to Transition Management.

IAT Andalusian Institute of Technology. Task 3.2. Business Survey Objective: To identify the skills required by the company to give the Mobility Offer.

Short-Term Efficacy and Tolerance of ddI, 3TC, EFV regimen Once-Daily in HIV-1–Infected African Children: ANRS (Burkiname). Operational lessons from.

IMPROVING MENTAL HEALTHCARE IN NURSING HOMES Brenda K. Keller, MD,CMD, Cameo Rogers, CTRS, CDP, Jennifer Medlin Hannah Fillman, Thomas M. Magnuson, MD.

Neonatal Fundamentals of Care (FOC) All Wales User Experience Audit 2014 Wendy Davies, Lead Nurse, Wales Neonatal Network Katy Swain, Neonatal Ward Manager,

“CML Today” – the mobile adherence app for CML patients CML Advocates Network “CML Today” – the mobile adherence.

Professor Philippe HUMBERT Research and Studies Center on the Integument (CERT) Department of Dermatology, Clinical Investigation Center (CIC BT506) Besançon.

2015/16 National Cancer Patient Experience Survey

Improving access through Innovation

Decision to Change Practice Review of the Literature

Formal Feedback about the ‘Bridge’ (Internally collated)

Tridiuum1 Mental Health Your “Emotional Vital Signs”

Jennifer S. Novia INFO 643 March 6, 2011

Design, Testing, and Use of a Pre-Visit Questionnaire to Improve CF Care Brooke Moore, M.D., MPH Pediatric Pulmonologist.

Compliance & Non-Compliance

Heart failure: Managing A chronic illness in the community

Orthopedic Physiotherapy Hyderabad Orthopedic Physiotherapy Hyderabad.

Bruce Waslick, MD Medical Director UMass / Baystate MCPAP Team

Black Box Warning What You Need To Know.

how to support our night staff.

Evaluating Effects of CFTR Modulation in Cystic Fibrosis

Course Orientation A Trade Union Training on Rights-based Approach to Labour Migration 27 June to 1 July 2016 Lomé, Togo.

DOTS IMPACT TO TUBERCULOSIS IN LITHUANIA

Design of adult and paediatric studies investigating the efficacy and tolerability of ivacaftor [16, 17]. Design of adult and paediatric studies investigating.

Grouped Frequency Tables – Averages – Card Complete & Match

Presentation transcript:

ECFC Brussels - June 2015 A nurse specific monitoring for CF patients taking ivacaftor (Kalydeco) A nurse specific monitoring for CF patients taking ivacaftor (Kalydeco TM ) M.Kerbrat 1, R.Fretay 2, D.Chevalier 3, F.You 3, M.Chiffoleau 4, A.Hubault 4, C.Matras 5,I.Berhault 6, MT.Jousseaume 6, MC.L’Abbé 6, C.Pingon 6, MC.Quillevere 7, S.Paul 7, K.Sery 8, M.Idres 9 1 CF reference centre Nantes-Roscoff, France; 2 CF centre Vannes-Lorient, France; 3 CF centre Nantes, France; 4 CF centre Angers, France; 5 CF centre Tours France; 6 CF centre Rennes, France; 7 CF centre Roscoff, France; 8 St Nazaire Hospital, France; 9 St Brieuc Hospital, France Acknowledgments to G.Rault 1 and S.Hugé 2 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 (Kalydeco TM )  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 Kalydeco TM ► 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

ECFC Brussels - June 2015

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 long- lasting treatment without feeling of improvement? ► Those questionnaires could be improved and used for other specific upcoming treatments