Kendrew, R. orcid.org/0009-0007-6737-0945, Ajraoui, S. orcid.org/0009-0003-4003-8804, Beaudet, A. orcid.org/0000-0003-0535-672X et al. (6 more authors) (2024) Relevance of patient-centered actigraphy measures in pulmonary arterial hypertension and chronic thromboembolic pulmonary hypertension: a qualitative interview study. BMC Pulmonary Medicine, 24 (1). 608. ISSN 1471-2466
Abstract
Background
Pulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH) are severe, progressive diseases characterized by key symptoms such as dyspnea and fatigue. These symptoms impair physical functioning, with patients struggling to perform their daily activities. One traditional measure of physical functioning and exercise capacity is the 6-minute walk test (6MWT). Actigraphy represents a promising tool to complement the 6MWT and provide a holistic picture of physical performance in patients with PAH or CTEPH. However, the current literature holds limited evidence on content validity of actigraphy in these populations, as reported by patients themselves. The primary objective of this study was to understand which physical functioning concepts are most meaningful to patients with PAH or CTEPH and identify relevant actigraphy variables and appropriate timeframes for their measurement.
Methods
This was a cross-sectional, qualitative study in adults with a confirmed diagnosis of PAH or CTEPH. Participants from the UK and USA were interviewed one-on-one via a web-based platform, with interviewers using a semi-structured discussion guide that included concept elicitation and cognitive debriefing sections. Data within the anonymized interview transcripts were coded and thematically analyzed.
Results
Concept elicitation identified the physical functioning concepts most meaningful to patients with PAH or CTEPH and generated a combined conceptual model of physical functioning, which strongly aligned with previous literature. During cognitive debriefing, of the four actigraphy variables debriefed in relation to these physical functioning concepts, study participants highly valued time spent in non-sedentary physical activity and time spent in moderate to vigorous activity, while step count and walking speed emerged as less relevant. Participants indicated four alternative variables as relevant: walking distance, walking up hills or inclines, duration of continuous walking bouts, and time spent walking. Regardless of the variable, participants suggested a timeframe of approximately 10 or 12 h/day over a minimum of 14 days for measuring physical functioning.
Conclusions
By demonstrating the content validity of actigraphy measures of physical functioning, this qualitative study begins to address the evidence gaps identified by the regulatory requirements for using actigraphy endpoints in future PAH and CTEPH clinical trials.
Metadata
Item Type: | Article |
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Authors/Creators: |
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Copyright, Publisher and Additional Information: | © The Author(s) 2024. Open Access: This article is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License, which permits any non-commercial use, sharing, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if you modified the licensed material. You do not have permission under this licence to share adapted material derived from this article or parts of it. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by-nc-nd/4.0/. |
Keywords: | Accelerometry; Actigraphy; Activities of daily living; Chronic thromboembolic pulmonary hypertension; Digital measures; Health-related quality of life; Patient-reported outcomes; Physical activity; Pulmonary arterial hypertension; Remote monitoring; Humans; Actigraphy; Male; Female; Middle Aged; Cross-Sectional Studies; Aged; Qualitative Research; Adult; Walk Test; Pulmonary Embolism; Pulmonary Arterial Hypertension; Exercise Tolerance; Chronic Disease; Hypertension, Pulmonary; Interviews as Topic; United Kingdom; United States |
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 Medicine and Population Health The University of Sheffield > Faculty of Medicine, Dentistry and Health (Sheffield) > Department of Infection, Immunity and Cardiovascular Disease |
Depositing User: | Symplectic Sheffield |
Date Deposited: | 09 Jan 2025 13:40 |
Last Modified: | 09 Jan 2025 13:40 |
Status: | Published |
Publisher: | Springer Science and Business Media LLC |
Refereed: | Yes |
Identification Number: | 10.1186/s12890-024-03442-7 |
Related URLs: | |
Open Archives Initiative ID (OAI ID): | oai:eprints.whiterose.ac.uk:221247 |