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Developing a handheld record for patients with cystic fibrosis

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

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Authors

O Narayan

S Davies

C Tibbins

JHM Rees

W Lenney



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.

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

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