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Narayan O, Davies S, Tibbins C, et al. Developing a handheld record for patients with cystic fibrosis. Patient Relat Outcome Meas. 2015;6:225-8doi: 10.2147/PROM.S86298.
Narayan, O., Davies, S., Tibbins, C., Rees, J. M., Lenney, W., & Gilchrist, F. J. (2015). Developing a handheld record for patients with cystic fibrosis. Patient related outcome measures, 6225-8. https://doi.org/10.2147/PROM.S86298
Narayan, Omendra, et al. "Developing a handheld record for patients with cystic fibrosis." Patient related outcome measures vol. 6 (2015): 225-8. doi: https://doi.org/10.2147/PROM.S86298
Narayan O, Davies S, Tibbins C, Rees JM, Lenney W, Gilchrist FJ. Developing a handheld record for patients with cystic fibrosis. Patient Relat Outcome Meas. 2015 Aug 13;6:225-8. doi: 10.2147/PROM.S86298. eCollection 2015. PMID: 26316833; PMCID: PMC4540166.
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Patient Relat Outcome Meas. 2015 Aug 13;6:225-8. doi: 10.2147/PROM.S86298. eCollection 2015.

Developing a handheld record for patients with cystic fibrosis.

Patient related outcome measures

Omendra Narayan, Siobhan Davies, Carly Tibbins, Jh Martyn Rees, Warren Lenney, Francis J Gilchrist

Affiliations

  1. Academic Department of Child Health, Royal Stoke University Hospital, Stoke-on-Trent, UK.
  2. West Midlands Medicines for Children Research Network, Royal Stoke University Hospital, Stoke-on-Trent, UK.
  3. Department of Paediatrics, Royal Shrewsbury Hospital, Shrewsbury, Stoke-on-Trent, UK.
  4. 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.

PMID: 26316833 PMCID: PMC4540166 DOI: 10.2147/PROM.S86298

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; patient and public involvement; patient handheld records; pediatrics

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