Compiled by Dr. Henry Ryley, published in the ECFS newsletter, May 2019
Abbott J., Havermans T., Jarvholm S., Landau E., Prins Y., Smrekar U., Staab D., Verity L., Verkleij M.
Mental Health screening in cystic fibrosis centres across Europe
Journal of Cystic Fibrosis 2019; 18: 299 - 303
Arden MA., Drabble S., O'Cathain A., Hutchings M., Wildman M.
Adherence to medication in adults with Cystic Fibrosis: An investigation using objective adherence data and the Theoretical Domains Framework
British Journal of Health Psychology 2019; 24: 357 - 380
Cronly J., Duff A., Riekert K., Horgan A., Lehane E., Perry I., Fitzgerald A., Howe B., Chroinin MN., Savage E.
Positive mental health and wellbeing in adults with cystic fibrosis: A cross sectional study
Journal of Psychosomatic Research 2019; 116: 125 - 130
Cronly JA., Duff AJ., Riekert KA., Fitzgerald AP., Perry IJ., Lehane EA., Horgan A., Howe BA., Chroinin MN., Savage E.
Health-Related Quality of Life in Adolescents and Adults With Cystic Fibrosis: Physical and Mental Health Predictors
Respiratory Care 2019; 64: 406 - 415
Cronly J., Horgan AM., Lehane E., Howe B., Duff AJ., Riekert KA., Perry IJ., Fitzgerald AP., Chroinin MN., Savage E.
Anxiety and Depression in Parent Caregivers of Children with Cystic Fibrosis
Journal of Child and Family Studies 2019; 28: 1304 - 1312
Cronly J., Savage E.
Positive mental health and wellbeing in adolescents with cystic fibrosis
Journal of Psychosomatic Research 2019; 116: 131 - 132
Foil KE., Powers A., Raraigh KS., Wallis K., Southern KW., Salinas D.
The increasing challenge of genetic counseling for cystic fibrosis
Journal of Cystic Fibrosis 2019; 18: 167 - 174
Hind D., Drabble SJ., Arden MA., Mandefield L., Waterhouse S., Maguire C., Cantrill H., Robinson L., Beever D., Scott AJ., Keating S., Hutchings M., Bradley J., Nightingale J., Allenby MI., Dewar J., Whelan P., Ainsworth J., et al
Supporting medication adherence for adults with cystic fibrosis: a randomised feasibility study
BMC Pulmonary Medicine 2019; 19: ArNo: 77
Hoo ZH., Wildman MJ., Campbell MJ., Walters SJ., Gardner B.
A pragmatic behavior-based habit index for adherence to nebulized treatments among adults with cystic fibrosis
Patient Preference and Adherence 2019; 13: 283 - 294
Hosseinzadeh SS., Rafeey M., Vahedi L., Noorazar SG.
The Frequency of Psychiatric Disorders in Cystic Fibrosis Patients Aged 5-18 Years in Northwest of Iran
Crescent Journal of Medical and Biological Sciences 2019; 6: 56 - 60
Maras D., Balfour L., Tasca GA., Gaudet E., Aaron SD., Cameron WD., Pakhale S.
Breathlessness catastrophizing relates to poorer quality of life in adults with cystic fibrosis
Journal of Cystic Fibrosis 2019; 18: 150 - 157
Oates GR., Stepanikova I., Rowe SM., Gamble S., Gutierrez HH., Harris WT.
Objective Versus Self-Reported Adherence to Airway Clearance Therapy in Cystic Fibrosis
Respiratory Care 2019; 64: 176 - 181
Saxby N., Beggs S., Battersby M., Lawn S.
What are the components of effective chronic condition self-management education interventions for children with asthma, cystic fibrosis, and diabetes? A systematic review
Patient Education and Counseling 2019; 102: 607 - 622
Tomaszek L., Debska G., Cepuch G., Kulpa M., Pawlik L., Broniatowska E.
Evaluation of quality of life predictors in adolescents and young adults with cystic fibrosis
Heart & Lung 2019; 48: 159 - 165
Wilson C., Duckers J., Speight L., Lau D., Ketchell RI., Edwards A.
Assessment of Sexual Reproductive Health Knowledge Amongst Patients with Cystic Fibrosis
Sexuality and Disability 2019; 37: 15 – 23
Compiled 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