Complied by Dr Henry Ryley, published in the ECFS newsletter, May 2018.


Bertrand DP., Minguet G., Gagnayre R., Lombrail P. Lessons from patient and parent involvement (P&PI) in a quality improvement program in cystic fibrosis care in France
Orphanet Journal of Rare Diseases 2018; 13:

Bertrand DP., Minguet G., Lombrail P., Rault G. Introduction of a collaborative quality improvement program in the French cystic fibrosis network: the PHARE-M initiative. Orphanet Journal of Rare Diseases 2018; 13

Bertrand DP., Nowak E., Dehillotte C., Lemmonier L., Rault G. Quality of care in cystic fibrosis: assessment protocol of the French QIP PHARE-M Orphanet Journal of Rare Diseases 2018; 13

Bowtell EC., Aroni R., Green J., Sawyer SM. Contrasting disclosure practices and experiences of school support for Australian adolescents with cancer, cystic fibrosis and anorexia
nervosa: parent perspectives International Journal of Inclusive Education 2018; 22: 176 - 191

Castellanos MEP., de Barros NF., Coelho SS. Biographical ruptures and flows in the family experience and trajectory of children with cystic fibrosis Ciencia & Saude Coletiva 2018; 23: 357 - 367

Cohen-Cymberknoh M., Tanny T., Breuer O., Blau H., Mussaffi H., Kadosh D., Gartner S., Salinas A., Bentur L., Nir V., Gur M., Reiter J., Shoseyov D., Kerem E., Berger I. Attention deficit hyperactivity disorder symptoms in patients with
cystic fibrosis. Journal of Cystic Fibrosis 2018; 17: 281 - 285

del Corral T., Iranzo MACI., Lopez-de-Uralde-Villanueva I.,
Martinez-Alejos R., Blanco I., Vilaro J
. Effectiveness of a Home-Based Active Video Game Programme in Young Cystic Fibrosis Patients Respiration 2018; 95: 87 - 97

Eyns H., De Wachter E., Malfroot A., Vaes P.
Acute Pain Perception During Different Sampling Methods for
Respiratory Culture in Cystic Fibrosis Patients Journal of Pain and Symptom Management 2018; 55: 872 - 880

Farber JG., Prieur MG., Roach C., Shay R., Walter M., Borowitz D., Dellon EP. Difficult conversations: Discussing prognosis with children with cystic fibrosis. Pediatric Pulmonology 2018; 53: 592 - 598

Fitzgerald C., George S., Somerville R., Linnane B., Fitzpatrick P. Caregiver burden of parents of young children with cystic fibrosis Journal of Cystic Fibrosis 2018; 17: 125 - 131

Garcia G., Snell C., Sawicki G., Simons LE. Mental Health Screening of Medically-Admitted Patients With Cystic Fibrosis
Psychosomatics 2018; 59: 158 - 168

Georgiopoulos AM., Friedman D., Porter EA., Krasner A.,
Kakarala SP., Glaeser BK., Napoleon SC., Wozniak J
.
Screening for ADHD in adults with cystic fibrosis: Prevalence,
health-related quality of life, and adherence. Journal of Cystic Fibrosis 2018; 17: 276 - 280

Gerardin M., Pesle A., Pougheon-Bertrand D., Leger P., Vallet C., Bihouee T., David V. A quality improvement program for adolescents with cystic fibrosis: focus on psychosocial skills. Orphanet Journal of Rare Diseases 2018; 13:

Hurst-Kennedy J. Cystic Fibrosis as a Theme to Incorporate Team-Based Learning in Cell Biology Courses American Biology Teacher 2018; 80: 2 - 5

Iorga M., Muraru D., Drochioi AS., Petrariu FD., Anton- Paduraru DT. Socio-demographic characteristics and reported psycho-medical symptoms for children with rare diseases. A comparative study between patients with phenylketonuria, cystic fibrosis and hypothyroidism. Medical-Surgical Journal-Revista Medico-Chirurgicala 2017; 121: 510 - 518

Jessup M., Smyth W., Abernethy G., Shields L., Douglas T.
Family-centred care for families living with cystic fibrosis in a rural setting: A qualitative study. Journal of Clinical Nursing 2018; 27: e590 - e599

Jimenez EB., Tito VV., Cevallos WP., Rosero C., Tobar RCC., Posligua JP., Alava CXV.
Anxiety and Depression in Patients with Cystic Fibrosis Treated at
Eugenio Espejo Hospital in the City of Quito. Acta Psiquiatrica Y Psicologica de America Latina 2017; 63: 183 - 188

Johnson B., Ngueyep R., Schechter MS., Serban N., Swann J.
Does distance to a cystic fibrosis center impact health outcomes?
Pediatric Pulmonology 2018; 53: 284 - 292

Kazmerski TM., Sawicki GS., Miller E., Jones KA., Abebe KZ., Tuchman LK., Ladores S., Rubenstein RC., Sagel SD., Weiner DJ., Pilewski JM., Orenstein DM., Borrero S.
Sexual and reproductive health behaviors and experiences reported by young. women with cystic fibrosis. Journal of Cystic Fibrosis 2018; 17: 57 - 63

Kazmerski TM., Sawicki GS., Miller E., Jones KA., Abebe KZ.,Tuchman LK., Ladores S., Rubenstein RC., Sagel SD., Weiner DJ., Pilewski JM., Orenstein DM., Borrero S. Sexual and reproductive health care utilization and preferences reported by young women with cystic fibrosis Journal of Cystic Fibrosis 2018; 17: 64 - 70

Ketchell RI. Telemedicine is the way forward for the management of cystic fibrosis - the case in favour. Paediatric Respiratory Reviews 2018; 26: 19 - 21

Lenney W. Telemedicine is the way forward for the management of cystic fibrosis- the case against. Paediatric Respiratory Reviews 2018; 26: 22 - 23

O'Connor K., Jukes T., Goobie S., DiRaimo J., Moran G., Potter BK., Chakraborty P., Rupar CA., Gannavarapu S., Prasad C. Psychosocial impact on mothers receiving expanded newborn screening results. European Journal of Human Genetics 2018; 26: 477 - 484

Nicolais CJ., Bernstein R., Riekert KA., Quittner AL. Parent knowledge of disease management in cystic fibrosis: Assessing behavioral treatment management. Pediatric Pulmonology 2018; 53: 162 - 173

Rowbotham NJ., Smith S., Leighton PA., Rayner OC., Gathercole K., Elliott ZC., Nash EF., Daniels T., Duff AJA., Collins S., Chandran S., Peaple U., Hurley MN., Brownlee K., Smyth AR. The top 10 research priorities in cystic fibrosis developed by a partnership between people with CF and healthcare providers Thorax 2018; 73: 388 - 390

Sawicki GS., Ostrenga J., Petren K., Fink AK., D'Agostino E., Strassle C., Schechter MS., Rosenfeld M. Risk Factors for Gaps in Care during Transfer from Pediatric to Adult Cystic Fibrosis Programs in the United States Annals of the American Thoracic Society 2018; 15: 234 - 240