Patient satisfaction: A valid concept?, Social Science & Medicine, vol.38, issue.4, pp.509-516, 1994. ,
DOI : 10.1016/0277-9536(94)90247-X
Time for a Thorough Evaluation of Patient-Centered Care, Circulation: Cardiovascular Quality and Outcomes, vol.6, issue.1, pp.2-4, 2013. ,
DOI : 10.1161/CIRCOUTCOMES.112.970194
The Patient Experience and Health Outcomes, N ENGL J MED, vol.3683, 2013. ,
usager dans le système de santé : réformateur social ou fiction utile? In: Politiques et management public, pp.129-173, 2007. ,
Actualités et dossier en santé publique n°72, 2010. ,
Improving Chronic Illness Care: Translating Evidence Into Action, Health Affairs, vol.20, issue.6, pp.64-78, 2001. ,
DOI : 10.1377/hlthaff.20.6.64
URL : http://content.healthaffairs.org/content/20/6/64.full.pdf
Assessing the Implementation of the Chronic Care Model in Quality Improvement Collaboratives, Health Services Research, vol.76, issue.(1, p.217, 2005. ,
DOI : 10.7326/0003-4819-127-12-199712150-00008
Evidence On The Chronic Care Model In The New Millennium, Health Affairs, vol.28, issue.1, pp.75-85, 2009. ,
DOI : 10.1377/hlthaff.28.1.75
The chronic care model for type 2 diabetes: a systematic review, Diabetology & Metabolic Syndrome, vol.24, issue.Suppl 6 ,
DOI : 10.2337/diacare.24.10.1821
Importance du problème : fréquence, contribution des différentes pathologies. Dossier les Maladies Chroniques, 2010. ,
La prise en charge de la maladie chronique Améliorer les soins prodigués aux patients souffrant de maladies chroniques : modèle de soins de longue durée. Bulletin Actualités de réadaptation cardiaque et de prévention de la maladie cardiovasculaire, pp.2-4, 2007. ,
La place des actions d'accompagnemet du patient au regard de la loi HPST, 2014. ,
DOI : 10.1016/j.meddro.2014.05.001
L'accord mutuel librement consenti dans la décision médicale, Médecine, pp.230-263, 2006. ,
enjeu du partenariat entre patients et professionnels de la santé, Santé Publique, vol.27, issue.1, pp.41-50, 2015. ,
DOI : 10.3917/spub.150.0041
Patient involvement in quality management: rationale and current status, Journal of Health Organization and Management, vol.29, issue.5 ,
DOI : 10.1136/bmjqs-2012-001174
Investigating organizational quality improvement systems, patient empowerment, organizational culture, professional involvement and the quality of care in European hospitals: the 'Deepening our Understanding of Quality Improvement in Europe (DUQuE)' project, BMC Health Services Research, vol.18, issue.1, p.281, 2010. ,
DOI : 10.1136/qshc.2008.029447
Front-Line Staff Perspectives on Opportunities for Improving the Safety and Efficiency of Hospital Work Systems, HSR: Health Services Research, vol.43, p.5, 2008. ,
Our front line Quality Improvement Priorities for 2016/17 V0, 2016. ,
Quality by Design: A Clinical Microsystems Approach, 2007. ,
Why Hospitals Don't Learn from Failures: Organizational and Psychological Dynamics That Inhibit System Change, California Management Review, vol.79, issue.2, 2002. ,
DOI : 10.1016/S0263-2373(98)00072-3
Structure et dynamique des organisations. Paris Montréal, Editions d'organisation 1995 ,
The Case for Using Industrial Quality Management Science in Health Care Organizations, JAMA: The Journal of the American Medical Association, vol.262, issue.20, pp.2869-2873, 1989. ,
DOI : 10.1001/jama.1989.03430200113036
A Framework for Collaborative Improvement, Quality Management in Health Care, vol.6, issue.4, pp.1-13, 1998. ,
DOI : 10.1097/00019514-199806040-00001
What Do Collaborative Improvement Projects Do? Experience from Seven Countries, The Joint Commission Journal on Quality and Safety, vol.29, issue.2, pp.85-93, 2003. ,
DOI : 10.1016/S1549-3741(03)29011-0
Evaluating the effect of a national collaborative: a cautionary tale. Sales A, Saint S, BMJ Qual Saf, pp.10-1136, 2012. ,
Large-System Transformation in Health Care: A Realist Review, Milbank Quarterly, vol.10, issue.2, pp.421-56, 2012. ,
DOI : 10.1016/S1048-9843(99)00013-2
Process evaluation of complex interventions: Medical Research Council guidance, BMJ, vol.350, p.1258, 2015. ,
Measuring the Effectiveness of a Collaborative for Quality Improvement in Pediatric Asthma Care: Does Implementing the Chronic Care Model Improve Processes and Outcomes of Care?, Ambulatory Pediatrics, vol.5, issue.2, pp.75-82, 2005. ,
DOI : 10.1367/A04-106R.1
Impact of a Quality Improvement Program on Care and Outcomes for Children With Asthma, Archives of Pediatrics & Adolescent Medicine, vol.159, issue.5, pp.464-473, 2005. ,
DOI : 10.1001/archpedi.159.5.464
Realistic evaluation, 1997. ,
Understanding the implementation of complex interventions in healthcare: the normalization process model, BMC Health Services Research, vol.7, p.148, 2007. ,
The SQUIRE (Standards for QUality Improvement Reporting Excellence) guidelines for quality improvement reporting: explanation and elaboration, Quality and Safety in Health Care, vol.17, issue.Suppl 1, pp.13-32, 2008. ,
DOI : 10.1136/qshc.2008.029058
Standards for Reporting Qualitative Research: A Synthesis of Recommendations, Acad Med, vol.89, pp.1245-1251, 2014. ,
Standards for Reporting Implementation Studies (StaRI) Statement, BMJ, vol.356, 2008. ,
DOI : 10.1136/bmj.i6795
Naissance d'une politique de la génétique. Dépistage, biomédecine, enjeux sociaux, Partage du savoir, pp.272-9782130587897, 2011. ,
Mucoviscidose : recommandations pour l'organisation des centres et r??seaux de soins, Archives de P??diatrie, vol.8, pp.802-819, 2001. ,
DOI : 10.1016/S0929-693X(01)80002-6
Analyse de la prise en charge hospitali??re ambulatoire de la mucoviscidose, Sant?? Publique, vol.27, issue.3, 2015. ,
DOI : 10.3917/spub.153.0363
Analyse de la prise en charge hospitali??re ambulatoire de la mucoviscidose, Sant?? Publique, vol.27, issue.3, pp.363-72, 2015. ,
DOI : 10.3917/spub.153.0363
Parent et coordinatrice du programme PHARE-M d'am??lioration de la qualit?? des soins dans la mucoviscidose, Archives de P??diatrie, vol.22, issue.5, pp.91-92, 2015. ,
DOI : 10.1016/S0929-693X(15)30047-6
Accelerating the rate of improvement in cystic fibrosis care: contributions and insights of the learning and leadership collaborative, BMJ Quality & Safety, vol.3, issue.8, pp.23-32, 2014. ,
DOI : 10.1097/00019514-200109030-00003
Process Mapping Quality by Design: A Clinical Microsystems Approach, pp.296-307, 2007. ,
Long term prognosis of patients with cystic fibrosis in relation to early detection by neonatal screening and treatment in a cystic fibrosis centre., Thorax, vol.50, issue.7, pp.712-730, 1995. ,
DOI : 10.1136/thx.50.7.712
Improving chronic care delivery and outcomes: the impact of the cystic fibrosis Care Center Network, BMJ Quality & Safety, vol.111, issue.(4 Pt 1), pp.3-8, 2014. ,
DOI : 10.1136/bmjqs-2013-002378
A story of success: continuous quality improvement in cystic fibrosis care in the USA, Thorax, vol.66, issue.12, 2011. ,
DOI : 10.1136/thoraxjnl-2011-200611
Quality Improvement Learning Collaboratives. 2005. Q Manage Health Care, pp.234-281 ,
DOI : 10.1097/00019514-200510000-00010
Accelerating the rate of improvement in cystic fibrosis care: contributions and insights of the learning and leadership collaborative, BMJ Quality & Safety, vol.3, issue.8, pp.23-32, 2014. ,
DOI : 10.1097/00019514-200109030-00003
Vers un rapprochement des registres et observatoires de la mucoviscidose (Towards a reconciliation of CF registries and observatories) Référence Mucoviscidose, pp.9-14, 1998. ,
Future trends in cystic fibrosis demography in 34 European countries, European Respiratory Journal, vol.46, issue.1, pp.133-174, 2015. ,
DOI : 10.1183/09031936.00196314
Quality by Design: A Clinical Microsystems Approach, 2007. ,
Improvements in Cystic Fibrosis: Quaterly Visist, Lung Function Tests, and Respiratory Cultures, pp.2014-2979 ,
Improving Evidence-Based Care in Cystic Fibrosis Through Quality Improvement, Archives of Pediatrics & Adolescent Medicine, vol.164, issue.10, pp.957-60, 2010. ,
DOI : 10.1001/archpediatrics.2010.178
Qualitative Data Analysis: An expanded sourcebook ,
Process Mapping Quality by Design: A Clinical Microsystems Approach, pp.296-307, 2007. ,
Process evaluation of complex interventions. UK Medical Research Council (MRC) guidance, 2016. ,
Realistic evaluation, 1997. ,
A quality improvement program to improve nutritional status of children with Cystic Fibrosis aged 2-12??years old over a 3??year period at CF center Roscoff, Brittany, Orphanet Journal of Rare Diseases, vol.49, issue.9 ,
DOI : 10.1002/ppul.22946
A quality improvement program for adolescents with cystic fibrosis: focus on psychosocial skills, Orphanet Journal of Rare Diseases, vol.125, issue.3, p.2017 ,
DOI : 10.1542/peds.2009-2791
A Quality Improvement Program to Reduce the ime on the lung transplant waiting list at the Nantes University Hospital, p.2017 ,
Lessons from the on-site quality audit of data transmitted to the French Registry, p.2017 ,
Lessons from patient and parent involvement in the Quality Improvement Program in Cystic Fibrosis care in France, p.2017 ,
Patient And Family Engagement: A Framework For Understanding The Elements And Developing Interventions And Policies, Health Affairs, vol.32, issue.2, pp.223-231, 2013. ,
DOI : 10.1377/hlthaff.2012.1133
Montreal model »: enjeux du partenariat relationnel entre patients et professionnels de la santé (The Montreal model: the challenges of a partnership relationship between patients and healthcare professionals), HS (S1), pp.41-50, 2015. ,
Realistic evaluation, 1997. ,
on behalf the MRC Population Health Science Research Network. Process evaluation of complex interventions: UK Medical Research Council guidance, 2014. ,
A decade of healthcare improvement in cystic fibrosis: lessons for other chronic diseases, BMJ Quality & Safety, vol.88, issue.Suppl 1, pp.1-2, 2014. ,
DOI : 10.1111/j.1468-0009.2010.00611.x
The cystic fibrosis improvement story: we count our successes in lives, BMJ Quality & Safety, vol.365, issue.(2 Pt 1), pp.268-271, 2014. ,
DOI : 10.1056/NEJMoa1105185
Key findings of the US Cystic Fibrosis Foundation's clinical practice benchmarking project, BMJ Quality & Safety, vol.17, issue.(S27), pp.15-22, 2014. ,
DOI : 10.1183/09031936.01.00053901
The Cystic Fibrosis Foundation Patient Registry as a tool for use in quality improvement, BMJ Quality & Safety, vol.160, issue.(4 Pt 1), pp.9-14, 2014. ,
DOI : 10.1016/j.ahj.2010.04.012
Improving chronic care delivery and outcomes: the impact of the cystic fibrosis Care Center Network, BMJ Quality & Safety, vol.111, issue.(4 Pt 1), pp.3-8, 2014. ,
DOI : 10.1136/bmjqs-2013-002378
Improving Chronic Illness Care: Translating Evidence Into Action, Health Affairs, vol.20, issue.6, pp.64-78, 2001. ,
DOI : 10.1377/hlthaff.20.6.64
URL : http://content.healthaffairs.org/content/20/6/64.full.pdf
The effects of quality improvement practices on team effectiveness: a mediational model, Journal of Organizational Behavior, vol.22, issue.5, pp.533-53, 2002. ,
DOI : 10.1177/1059601197224002
The Role of Perceived Team Effectiveness in Improving Chronic Illness Care, Medical Care, vol.42, issue.11, pp.1040-1048, 2004. ,
DOI : 10.1097/00005650-200411000-00002
Patient And Family Engagement: A Framework For Understanding The Elements And Developing Interventions And Policies, Health Affairs, vol.32, issue.2, pp.223-231, 2013. ,
DOI : 10.1377/hlthaff.2012.1133
A longitudinal, multi-level comparative study of quality and safety in European hospitals: the QUASER study protocol, BMC Health Services Research, vol.24, issue.4, p.285, 2011. ,
DOI : 10.2307/2392365
Longitudinal relationship among growth, nutritional status, and pulmonary function in children with cystic fibrosis: analysis of the Cystic Fibrosis Foundation National CF Patient Registry, cftr2.org/files/CFTR2_13August2015.pdf 109 Zemel, pp.374-80, 2000. ,
Improving chronic care delivery and outcomes: the impact of the cystic fibrosis Care Center Network, BMJ Quality & Safety, vol.111, issue.(4 Pt 1), p.3, 2014. ,
DOI : 10.1136/bmjqs-2013-002378
Quality Improvement Learning Collaboratives. Q Manage Health Care, pp.234-247, 2005. ,
DOI : 10.1097/00019514-200510000-00010
Accelerating the rate of improvement in cystic fibrosis care: contributions and insights of the learning and leadership collaborative, BMJ Quality & Safety, vol.3, issue.8, pp.23-32, 2014. ,
DOI : 10.1097/00019514-200109030-00003
A decade of healthcare improvement in cystic fibrosis: lessons for other chronic diseases, BMJ Quality & Safety, vol.88, issue.Suppl 1, pp.1-2, 2014. ,
DOI : 10.1111/j.1468-0009.2010.00611.x
Order of designating cystic fibrosis centers Paris: Official Bulletin of the French Ministry of Employment and Solidarity no. 2002- 16 [online], Introduction of a Collaborative Quality Improvement Program in the French Cystic Fibrosis Network: the PHARE-M Initiative. BioMedCentral OJRD, pp.2-16, 2002. ,
on behalf the MRC Population Health Science Research Network. Process evaluation of complex interventions: UK Medical Research Council guidance, 2014. ,
Improving Chronic Illness Care: Translating Evidence Into Action, Health Affairs, vol.20, issue.6, pp.64-78, 2001. ,
DOI : 10.1377/hlthaff.20.6.64
Standardisation of spirometry, European Respiratory Journal, vol.26, issue.2, pp.319-338, 2005. ,
DOI : 10.1183/09031936.05.00034805
Lessons from the on-site quality control of the patient data transmitted to the French Cystic Fibrosis Registry, 2016. ,
The effects of quality improvement practices on team effectiveness: a mediational model, Journal of Organizational Behavior, vol.22, issue.5, pp.533-53, 2002. ,
DOI : 10.1177/1059601197224002
The Role of Perceived Team Effectiveness in Improving Chronic Illness Care, Medical Care, vol.42, issue.11, pp.1040-1048, 2004. ,
DOI : 10.1097/00005650-200411000-00002
Patient And Family Engagement: A Framework For Understanding The Elements And Developing Interventions And Policies, Health Affairs, vol.32, issue.2, pp.223-231, 2013. ,
DOI : 10.1377/hlthaff.2012.1133
A longitudinal, multi-level comparative study of quality and safety in European hospitals: the QUASER study protocol, BMC Health Services Research, vol.24, issue.4, p.285, 2011. ,
DOI : 10.2307/2392365
Qualitative Data Analysis: An Expanded Sourcebook, 2nd Edition. London and Thousand Oaks, California, French translation: Miles MB and Huberman MA. Analyse des données qualitatives, pp.187-191, 1994. ,
Risk factors for rate of decline in FEV1 in adults with cystic fibrosis, Journal of Cystic Fibrosis, vol.11, issue.5, pp.405-411, 2012. ,
DOI : 10.1016/j.jcf.2012.03.009
Factors associated with FEV1 decline in cystic fibrosis: analysis of the ECFS Patient Registry, European Respiratory Journal, vol.43, issue.1, 2014. ,
DOI : 10.1183/09031936.00166412
The analysis of categorical data, Scope, vol.16, issue.1, pp.18-21, 2007. ,
Vers une participation active des usagers dans les démarches qualité, SOINS, vol.812, pp.27-31, 2017. ,
European Cystic Fibrosis Society Standards of Care: Quality Management in cystic fibrosis, Journal of Cystic Fibrosis, vol.13, pp.43-59, 2014. ,
DOI : 10.1016/j.jcf.2014.03.011
Effectiveness of strategies for informing, educating, and involving patients, BMJ, vol.335, issue.7609, pp.24-31, 2007. ,
DOI : 10.1136/bmj.39246.581169.80
Issues of Relational Partnership between Patients and Health Professionals», HS, vol.1, pp.41-50, 2015. ,
Patients as Partners: A Qualitative Study of Patients??? Engagement in Their Health Care, PLOS ONE, vol.20, issue.6, p.122499, 2015. ,
DOI : 10.1371/journal.pone.0122499.t001
Engaging patients and consumers in research evidence: Applying the conceptual model of patient and family engagement, Patient Education and Counseling, vol.100, issue.1, pp.25-34, 2017. ,
DOI : 10.1016/j.pec.2016.07.009
An interprofessional approach to shared decision-making to encourage patient involvement, pp.462-471 ,
Patient and Public involvement in the Education of Tomorrow's Dctors, 2011. ,
Active patient involvement in the education of health professionals, Medical Education, vol.24, issue.2, pp.64-74, 2010. ,
DOI : 10.1177/136140969900400403
Patient teachers, a revolution in the training of doctors. LE MONDE, 2016. ,
Can patients assess the quality of health care?, BMJ, vol.333, issue.7557, pp.1-2, 2006. ,
DOI : 10.1136/bmj.333.7557.1
Through the Patient's Eyes: Understanding and Promoting Patient-Centered Care, 1993. ,
Patients and families as safety experts, Canadian Medical Association Journal, vol.184, issue.1, pp.15-16, 2012. ,
DOI : 10.1503/cmaj.111311
URL : http://www.cmaj.ca/content/184/1/15.full.pdf
Identification by families of pediatric adverse events and near misses overlooked by health care providers, Canadian Medical Association Journal, vol.184, issue.1, 2012. ,
DOI : 10.1503/cmaj.110393
Is patient centredness in European hospitals related to existing quality improvement strategies ? Analysis of a cross-sectionnal survey (MARQuIS study) Qual Saf Health Care, pp.44-50, 2009. ,
Investigating organizational quality improvement systems, patient empowerment, organizational culture, professional involvement and the quality of care in European hospitals: the 'Deepening our Understanding of Quality Improvement in Europe (DUQuE)' project, BMC Health Services Research, vol.18, issue.1, p.281, 2010. ,
DOI : 10.1136/qshc.2008.029447
Patient involvement in quality management: rationale and current status, Journal of Health Organization and Management, vol.29, issue.5 ,
DOI : 10.1136/bmjqs-2012-001174
The Cystic Fibrosis Foundation Patient Registry as a tool for use in quality improvement, BMJ Quality & Safety, vol.160, issue.(4 Pt 1), pp.9-14, 2014. ,
DOI : 10.1016/j.ahj.2010.04.012
Accelerating the rate of improvement in cystic fibrosis care: contributions and insights of the learning and leadership collaborative, BMJ Quality & Safety, vol.3, issue.8, pp.23-32, 2014. ,
DOI : 10.1097/00019514-200109030-00003
Introduction of a Collaborative Quality Improvement Program in the French Cystic Fibrosis Network: the PHARE-M initiative. OJRD Supplement, 2017. ,
Towards an active participation of users In quality procedures ,
Quality of care in cystic fibrosis: assessment protocol of the French QIP PHARE-M. OJRD Supplement, 2017. ,
Process evaluation of complex interventions. UK Medical Research Council (MRC) guidance, 2016. ,
Realistic evaluation, 1997. ,
The Role of Perceived Team Effectiveness in Improving Chronic Illness Care, Medical Care, vol.42, issue.11, p.42, 2004. ,
DOI : 10.1097/00005650-200411000-00002
The effects of QI practices on team effectiveness: a mediational model, Journal of Organizational Behaviour, 2002. ,
Improving Chronic Illness Care: Translating Evidence Into Action, Health Affairs, vol.20, issue.6, pp.64-78, 2001. ,
DOI : 10.1377/hlthaff.20.6.64
Patient And Family Engagement: A Framework For Understanding The Elements And Developing Interventions And Policies, Health Affairs, vol.32, issue.2, pp.32-223, 2013. ,
DOI : 10.1377/hlthaff.2012.1133
Patient Involvement in Health Care Decision Making: A Review, Iranian Red Crescent Medical Journal, vol.16, issue.1, p.2454 ,
DOI : 10.5812/ircmj.12454
Accelerating the rate of improvement in cystic fibrosis care: contributions and insights of the learning and leadership collaborative, BMJ Quality & Safety, vol.3, issue.8, pp.23-32, 2014. ,
DOI : 10.1097/00019514-200109030-00003
Leadership for patient engagement. TheKing'sFund, 2012. ,
Improving Evidence-Based Care in Cystic Fibrosis Through Quality Improvement, Archives of Pediatrics & Adolescent Medicine, vol.164, issue.10, pp.957-960, 2010. ,
DOI : 10.1001/archpediatrics.2010.178
Commentary: Sweden rolls out online access to medical records and is developing new e-health services to enable people to manage their care, BMJ, vol.350, issue.feb11 2, p.359, 2015. ,
DOI : 10.1136/bmj.h359
Experience-based design: from redesigning the system around the patient to co-designing services with the patient, Quality and Safety in Health Care, vol.15, issue.5, pp.307-310, 2005. ,
DOI : 10.1136/qshc.2005.016527
The interdependent roles of patients, families and professionals in cystic fibrosis: a system for the coproduction of healthcare and its improvement: Table??1, BMJ Quality & Safety, vol.22, issue.Suppl 1, pp.90-94, 2014. ,
DOI : 10.1097/QMH.0b013e31828bc3bc
Patient experience in cystic fibrosis care: Development of a disease-specific questionnaire, Chronic Illness, vol.4, issue.2, pp.108-133, 2015. ,
DOI : 10.1136/jech.40.3.267
Development and validation of a cystic fibrosis patient and family member experience of care survey. Q Manage Health Care, 2à&, vol.33, issue.2, pp.100-116 ,
Patient focused registries can improve health, care, and science, BMJ, vol.354, p.3319, 2016. ,
DOI : 10.1136/bmj.i3319
URL : http://www.bmj.com/content/bmj/354/bmj.i3319.full.pdf
Evidence-based activism: Patients???, users??? and activists??? groups in knowledge society, BioSocieties, vol.62, issue.3, pp.111-139 ,
DOI : 10.1515/9781400840397
URL : https://hal.archives-ouvertes.fr/hal-00976588
Commentary: Sweden rolls out online access to medical records and is developing new e-health services to enable people to manage their care, BMJ, vol.350, issue.feb11 2, p.359, 2015. ,
DOI : 10.1136/bmj.h359
Improving Evidence-Based Care in Cystic Fibrosis Through Quality Improvement, Archives of Pediatrics & Adolescent Medicine, vol.164, issue.10, pp.957-960, 2010. ,
DOI : 10.1001/archpediatrics.2010.178
agir (empowerment) des patients questionne l'éducation thérapeutique et ses acteurs Réflexion autour de quatre populations vulnérables : les enfants, les adolescents, les personnes très âgées et les personnes ayant un trouble psychique. Séminaire rechercheaction, pp.21-22, 2017. ,
188 Coproduction of healthcare service, BMJ Qual Saf Published, pp.10-1136, 2015. ,
Experience-based design: from redesigning the system around the patient to co-designing services with the patient, Quality and Safety in Health Care, vol.15, issue.5, pp.307-310, 2005. ,
DOI : 10.1136/qshc.2005.016527
The interdependent roles of patients, families and professionals in cystic fibrosis: a system for the coproduction of healthcare and its improvement: Table??1, BMJ Quality & Safety, vol.22, issue.Suppl 1, pp.90-94, 2014. ,
DOI : 10.1097/QMH.0b013e31828bc3bc
Defining Patient Experience, Patient Experience Journal, vol.2014, issue.11, pp.6-19 ,
A report of the Beryl Institute benchmarking study. 2017. The State of Patient Experience 2017: a return to purpose ,
Patient experience in cystic fibrosis care: Development of a disease-specific questionnaire, Chronic Illness, vol.4, issue.2, pp.108-133, 2015. ,
DOI : 10.1136/jech.40.3.267
Development and validation of a cystic fibrosis patient and family member experience of care survey. Q Manage Health Care, pp.100-116, 2015. ,