Developing a handheld record for patients with cystic fibrosis

Abstract

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