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Developing a handheld record for patients with cystic fibrosis

Authors Narayan O, Davies S, Tibbins C, Rees JHM, Lenney W, Gilchrist F

Received 8 April 2015

Accepted for publication 13 May 2015

Published 13 August 2015 Volume 2015:6 Pages 225—228


Checked for plagiarism Yes

Review by Single-blind

Peer reviewer comments 3

Editor who approved publication: Dr Robert Howland

Omendra Narayan,1 Siobhan Davies,1 Carly Tibbins,2 JH Martyn Rees,3 Warren Lenney,1,4 Francis J Gilchrist1,4

1Academic Department of Child Health, Royal Stoke University Hospital, Stoke-on-Trent, 2West Midlands Medicines for Children Research Network, Royal Stoke University Hospital, Stoke-on-Trent, 3Department of Paediatrics, Royal Shrewsbury Hospital, Shrewsbury, 4Institute for Science and Technology in Medicine, Keele University, Guy Hilton Research Centre, Stoke-on-Trent, UK

Abstract: Patient handheld records (PHHRs) promote self-management and empower the holder to take a more active role in the management of their disease. They have been used successfully in improving preventative care for children and have contributed to improved adherence in a number of chronic illnesses. Despite the potential advantages, there are no standard PHHRs for patients with cystic fibrosis (CF). We report the consultation process that led to the development of a CF PHHR, describe the final document, and analyze the feedback from their use at our center. We have made the CF PHHR freely available online.

Keywords: cystic fibrosis, pediatrics, patient and public involvement, patient handheld records

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