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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

Gao, J; Arden, M; Hoo, ZH; Wildman, M; (2019) 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. BMC Health Services Research , 19 (1) , Article 420. 10.1186/s12913-019-4260-5. Green open access

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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.

Type: Article
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
Location: England
Open access status: An open access version is available from UCL Discovery
DOI: 10.1186/s12913-019-4260-5
Publisher version: https://doi.org/10.1186/s12913-019-4260-5
Language: English
Additional information: © The Author(s) 2019. This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/).
Keywords: Cystic fibrosis, Objective medication adherence, PAM-13, Patient activation, Think-aloud
UCL classification: UCL
UCL > Provost and Vice Provost Offices
UCL > Provost and Vice Provost Offices > School of Education
UCL > Provost and Vice Provost Offices > School of Education > UCL Institute of Education
UCL > Provost and Vice Provost Offices > School of Education > UCL Institute of Education > IOE - Curriculum, Pedagogy and Assessment
URI: https://discovery.ucl.ac.uk/id/eprint/10081881
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