Robinson, L. orcid.org/0000-0001-5680-0734, Maguire, C. orcid.org/0000-0002-9397-7608, Hoo, Z.H. orcid.org/0000-0002-7067-3783 et al. (1 more author) (2019) Making the invisible visible : the availability and desirability of adherence data in routine CF care– findings from a national questionnaire survey. F1000Research, 8. 1904. ISSN 2046-1402
Abstract
Background: Inhaled medications for cystic fibrosis (CF) are effective but adherence is low. Clinicians find it difficult to estimate how much treatment people with CF (PWCF) take, whilst objective adherence measurement demonstrates that patients are poorly calibrated with a tendency to over-estimate actual adherence. The diagnostic approach to a PWCF with deteriorating clinical status and very low adherence is likely to be different to the approach to a deteriorating patient with optimal adherence. Access to objective adherence data in routine consultations could help to overcome diagnostic challenges for clinicians and people with CF. Attitudes of clinicians to the use and importance of routinely available adherence data is unknown.
Methods: We conducted an online questionnaire survey with UK CF centres. We asked five questions relating to the current use and perception of objective measurements of adherence in routine care.
Results: A total of eight CF centres completed the questionnaire. Few of the responding centres have adherence data readily available in routine clinics (13% of centres use medicines possession ratio; of centres with access to I-nebs® it was estimated that 17% of patients had I-neb data regularly available in clinics). All centres considered the availability of objectively measured adherence data to be important. Respondents identified that systems developed to provide adherence data in clinical practice must provide data to both clinicians and patients that is readily understood and easy to use.
Conclusions: Centres perceived the availability of adherence data in routine care to be important but objective measures of adherence is rarely available at present.
Metadata
Item Type: | Article |
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Authors/Creators: |
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Copyright, Publisher and Additional Information: | © 2020 The Authors. This is an open access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. |
Keywords: | cystic fibrosis; medication adherence; routine monitoring; nebulisers |
Dates: |
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Institution: | The University of Sheffield |
Academic Units: | The University of Sheffield > Faculty of Medicine, Dentistry and Health (Sheffield) > School of Health and Related Research (Sheffield) > ScHARR - Sheffield Centre for Health and Related Research The University of Sheffield > Sheffield Teaching Hospitals |
Depositing User: | Symplectic Sheffield |
Date Deposited: | 21 Jan 2020 09:46 |
Last Modified: | 21 Jan 2020 09:47 |
Status: | Published |
Publisher: | F1000 Research Ltd |
Refereed: | Yes |
Identification Number: | 10.12688/f1000research.21033.2 |
Open Archives Initiative ID (OAI ID): | oai:eprints.whiterose.ac.uk:155586 |
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