Updated 5 April 2013

Cystic fibrosis research in allied health and nursing professions

Journal of Cystic Fibrosis
Volume 11, Issue 5, September 2012, Pages 387–392

Judy M. Bradley a, b, Corresponding author
Susan Madge c;Alison M. Morton d;Alexandra L. Quittner e;J. Stuart Elbornb,f

For the Allied Health and Nursing Professions Working Group, European Cystic Fibrosis Society

a Health and Rehabilitation Sciences Research Institute, School of Health Sciences, University of Ulster, Newtownabbey, BT37 0QB, UK
b Adult CF Centre, Belfast City Hospital, Belfast Health and Social Care Trust, Belfast, BT9 7AB, UK
c Cystic Fibrosis, Royal Brompton Hospital, Sydney Street, London, SW3 6NP, UK
d Leeds Teaching Hospitals NHS Trust, LS1 3EX, UK
e Department of Psychology, University of Miami 5665 Ponce de Leon Blvd., Coral Gables, Florida, 3146-2070, USA
f Respiratory Medicine, Queens University Belfast, Health Sciences Building, 97 Lisburn Road, Belfast, BT9 7BL, UK


(The full report can be accessed here)

This report is the result of the “Allied Health and Nursing Professions Working Group” meeting which took place in Verona, Italy, November 2009, which was organised by the European Cystic Fibrosis Society, and involved 32 experts. The meeting was designed to provide a “roadmap” of high priority research questions that can be addressed by Allied Health Professionals (AHP) and nursing. The other goal was to identify research skills that would be beneficial to AHP and nursing researchers and would ultimately improve the research capacity and capability of these professions. The following tasks were accomplished: 1) a Delphi survey was used to identify high priority research areas and themes, 2) common research designs used in AHP and nursing research were evaluated in terms of their strengths and weaknesses, 3) methods for assessing the clinimetric and psychometric properties, as well as feasibility, of relevant outcome measures were reviewed, and 4) a common skill set for AHPs and nurses undertaking clinical research was agreed on and will guide the planning of future research opportunities. This report has identified important areas and themes for future research which include: adherence; physical activity/exercise; nutritional interventions; interventions for the newborn with CF and evaluation of outcome measures for use in AHP and nursing research. It has highlighted the significant challenges AHPs and nurses experience in conducting clinical research, and proposes strategies to overcome these challenges. It is hoped that this report will encourage research initiatives that assess the efficacy/effectiveness of AHP and nursing interventions in order to improve the evidence base. This should increase the quality of research conducted by these professions, justify services they currently provide, and expand their skills in new areas, with the ultimate goal of improving care for patients with CF.