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Open Access 03-01-2024 | Original Research Article

Development and Testing of a Chronic-Disease Patient Experience Mapping Toolbox

Authors: Elisabeth M. Oehrlein, Silke Schoch, Kelsie Majercak, Laura Elisabeth Gressler, Ryan C. Costantino, T. Rosie Love, Eleanor M. Perfetto, the National Health Council’s Patient Experience Mapping Workgroup

Published in: The Patient - Patient-Centered Outcomes Research | Issue 3/2024

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Abstract

Background

Stakeholders increasingly expect research and care delivery to be guided by and to optimize patient experiences. However, standardized tools to engage patients to gather high-quality data about their experiences, priorities, and desired outcomes are not publicly available. The objective of this study was to develop and test a Toolbox with a disease-agnostic interview guide template and accompanying resources to assist researchers in engaging patients living with chronic disease in a dialogue about their experiences.

Methods

Guided by a multidisciplinary workgroup, a targeted literature review (PubMed) was conducted, followed by group discussions to identify/thematically organize patient experience concepts, development of a conceptual model, and drafting of an interview guide template and patient-facing visual. Materials were tested/refined via cognitive (n = 5) and pilot (n = 30) interviews conducted virtually with US patients diagnosed with chronic/potentially disabling conditions from December 2020 to April 2021. Patient-facing tools were reviewed by health literacy experts for applicability/accessibility. English-speaking adults who self-reported receiving a chronic condition diagnosis at least 6 months prior participated in a 60–90 min interview.

Results

Patient experience concepts were organized thematically under three domains: (1) life before a diagnosis, (2) experiences getting a diagnosis, and (3) experiences living with a diagnosis. A plain language consent sheet template, interview guide template, and patient experience conceptual model were developed and revised based on input from interviewees, interviewers, and the workgroup.

Conclusions

A disease-agnostic patient-engagement Toolbox was developed and tested to capture patient experience data. These materials can be customized based on study objectives and leveraged by various stakeholders to identify opportunities to enhance the patient centricity of healthcare delivery and research.
Appendix
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Metadata
Title
Development and Testing of a Chronic-Disease Patient Experience Mapping Toolbox
Authors
Elisabeth M. Oehrlein
Silke Schoch
Kelsie Majercak
Laura Elisabeth Gressler
Ryan C. Costantino
T. Rosie Love
Eleanor M. Perfetto
the National Health Council’s Patient Experience Mapping Workgroup
Publication date
03-01-2024
Publisher
Springer International Publishing
Published in
The Patient - Patient-Centered Outcomes Research / Issue 3/2024
Print ISSN: 1178-1653
Electronic ISSN: 1178-1661
DOI
https://doi.org/10.1007/s40271-023-00658-3

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