title: Developing a handheld record for patients with cystic fibrosis.
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.
authors: Academic Department of Child Health, Royal Stoke University Hospital, Stoke-on-Trent, UK.
authors: Omendra
authors: O
authors: Narayan
authors: Academic Department of Child Health, Royal Stoke University Hospital, Stoke-on-Trent, UK.
authors: Siobhan
authors: S
authors: Davies
authors: West Midlands Medicines for Children Research Network, Royal Stoke University Hospital, Stoke-on-Trent, UK.
authors: Carly
authors: C
authors: Tibbins
authors: Department of Paediatrics, Royal Shrewsbury Hospital, Shrewsbury, Stoke-on-Trent, UK.
authors: Jh Martyn
authors: JM
authors: Rees
authors: Academic Department of Child Health, Royal Stoke University Hospital, Stoke-on-Trent, UK ; Institute for Science and Technology in Medicine, Keele University, Guy Hilton Research Centre, Stoke-on-Trent, UK.
authors: Warren
authors: W
authors: Lenney
authors: Academic Department of Child Health, Royal Stoke University Hospital, Stoke-on-Trent, UK ; Institute for Science and Technology in Medicine, Keele University, Guy Hilton Research Centre, Stoke-on-Trent, UK.
authors: Francis J
authors: FJ
authors: Gilchrist
keywords: cystic fibrosis; patient and public involvement; patient handheld records; pediatrics