Developing a handheld record for patients with cystic fibrosis

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

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.

Citation

Narayan, O., Davies, S., Tibbins, C., Rees, J., Lenney, W., & Gilchrist, F. (2015). Developing a handheld record for patients with cystic fibrosis. Patient Related Outcome Measures, 2015(6), 225 - 228. https://doi.org/10.2147/PROM.S86298

• Journal Article Type: Article
• Acceptance Date: Aug 13, 2015
• Publication Date: Aug 13, 2015
• Journal: Patient Related Outcome Measures
• Publisher: Dove Press
• Peer Reviewed: Peer Reviewed
• Volume: 2015
• Issue: 6
• Pages: 225 - 228
• DOI: https://doi.org/10.2147/PROM.S86298
• Keywords: cystic fibrosis, patient and public involvement, patient handheld records, pediatrics
• Publisher URL: https://dx.doi.org/10.2147/PROM.S86298