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BMC Health Services Research
Published in: BMC Health Services Research 1/2019

Open Access 01-12-2019 | Cystic Fibrosis | Research article

Understanding patient activation and adherence to nebuliser treatment in adults with cystic fibrosis: responses to the UK version of PAM-13 and a think aloud study

Authors: Jie Gao, Madelynne Arden, Zhe Hui Hoo, Martin Wildman

Published in: BMC Health Services Research | Issue 1/2019

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Abstract

Background

Patient activation refers to patients’ knowledge, skills, and confidence in self-managing health conditions. In large cross-sectional studies, individuals with higher patient activation are observed to have better health outcomes with the assumption that they are more engaged in health self-management. However, the association between patient activation and objectively measured self-care indicators in individuals can be inconsistent. This research investigated the role of patient activation as measured by the UK Patient Activation Measure (PAM-13) in adults with Cystic Fibrosis (CF). The aims were twofold: to explore how adults with CF interpret and respond to the PAM-13; and to investigate the association between PAM-13 and objectively measured nebuliser adherence in UK adults with CF.

Methods

This article describes two studies which examined the PAM-13 from different perspectives. Study 1 comprised ‘think aloud’ interviews with 15 adults with CF. The data were analysed using an a priori coding framework. Study 2 examined the association between PAM-13 and objectively measured nebuliser adherence in 57 adults with CF.

Results

Study 1 showed that adults with CF encountered several difficulties while completing the PAM-13. The difficulties were related to understanding how to interpret aspects of CF in order to respond (i.e., control over the condition, ability to exercise) and item wording. Some adults with CF responded to the PAM-13 in an optimistic way in relation to what they thought they should do rather than what they actually do. These findings were echoed by the results of Study 2, which showed that PAM-13 scores were not significantly correlated with objective medication adherence in a different sample. This article synthesises the results of both studies, providing insights into influences and associations of patient activation as measured by the UK PAM-13 in adults with CF.

Conclusions

There were some significant difficulties created by the wording of the UK PAM-13 for adults with CF. This may partly explain the finding that PAM-13 scores were not related to objectively measured nebuliser adherence in this study. The UK PAM-13 would benefit from further research to verify its validity and reliability in different patient populations against objective measures of behaviour rather than simply self-report.
Footnotes
1
Nebuliser adherence data were used to indicate high or low adherence. Nebuliser adherence data were objectively captured with chipped devices (E-track®). Adherence was calculated as a percentage between total amount of medication used against the agreed dose between clinicians and adults with CF and clustered according to a pragmatic algorithm-based clustering method [27]. The most recent 12-month of data in the period from 01 Jan 2016 to 31 Mar 2017 for each potential participant was used for clustering (very low adherence < 25%; low adherence 25.1–50%; moderate adherence 50.1–75%; high adherence > 75%) [27].
 
2
Participants’ lung function was defined by their FEV1. The best % predicted FEV1 (calculated with Knudson equation) [28] from 01 Jan 2016 to 31 Dec 2016 for each potential participant was used. % FEV1 ≥ 70% was classified as high (i.e., good lung function), which is the standard cut-off used in CF epidemiological studies [29]. Similar cut-off also applies well for the UK data [30]. Conversely, % FEV1 < 70% was classified as low (i.e., poor lung function).
 
3
The first two-week period was at baseline (i.e., 14 days post-consent); while the second two-week period was at the five-month follow up (i.e., 14 days preceding the completion of follow-up questionnaires).
 
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Metadata
Title
Understanding patient activation and adherence to nebuliser treatment in adults with cystic fibrosis: responses to the UK version of PAM-13 and a think aloud study
Authors
Jie Gao
Madelynne Arden
Zhe Hui Hoo
Martin Wildman
Publication date
01-12-2019
Publisher
BioMed Central
Published in
BMC Health Services Research / Issue 1/2019
Electronic ISSN: 1472-6963
DOI
https://doi.org/10.1186/s12913-019-4260-5

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