Developing a handheld record for patients with cystic fibrosis
Omendra Narayan1, Siobhan Davies1, Carly Tibbins2
1Academic Department of Child Health, Royal Stoke University Hospital, 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.
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