Making space for patients’ preferences in precision medicine: a qualitative study exploring perspectives of patients with rheumatoid arthritis

Objective Precision medicine in rheumatoid arthritis (RA) creates new opportunities to involve patients in early identification of accurate indicators of health trajectories. The aim of this study was to explore patient perspectives on patient-centredness in precision medicine for RA treatment.Desig...

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Main Authors: Bente Appel Esbensen, Karin Schölin Bywall, Jennifer Viberg Johansson, Inger Erlandsson, Marie Heidenvall, Marta Lason
Format: Article
Language:English
Published: BMJ Publishing Group 2022-06-01
Series:BMJ Open
Online Access:https://bmjopen.bmj.com/content/12/6/e058303.full
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author Bente Appel Esbensen
Karin Schölin Bywall
Jennifer Viberg Johansson
Inger Erlandsson
Marie Heidenvall
Marta Lason
author_facet Bente Appel Esbensen
Karin Schölin Bywall
Jennifer Viberg Johansson
Inger Erlandsson
Marie Heidenvall
Marta Lason
author_sort Bente Appel Esbensen
collection DOAJ
description Objective Precision medicine in rheumatoid arthritis (RA) creates new opportunities to involve patients in early identification of accurate indicators of health trajectories. The aim of this study was to explore patient perspectives on patient-centredness in precision medicine for RA treatment.Design Semistructured interviews were conducted to explore patients’ perspectives on a new personalised approach to RA treatment. The interview guide was developed together with patient research partners and health care professionals.Setting An invitation to the interviews was sent through a mobile application. The interviews were one-on-one, using an interview guide with open-ended questions. Interviews were conducted digitally (October 2020–February 2021) via Zoom or telephone, depending on each participant’s preferences.Participants Patients with RA (N=12) were purposively recruited. Patients were eligible if they had an RA diagnosis, were aged 18–80 years, and understood and expressed themselves in Swedish. Participants and researchers did not know each other prior to the interviews.Results Participants expressed desires and needs for patients to have an active role in precision medicine by making shared treatment decisions together with a healthcare professional. In order for that to work, patients need information on potential treatment options, an ability to express their preferences, an individual treatment plan and identification of personal treatment goals. Patients also identified two requirements of healthcare professional in precision medicine: a safe environment to express personal matters and two-way communication with healthcare professionals.Conclusion Communication between patients and healthcare professionals needs to be more focused on patients’ individual treatment preferences and expressed needs, in order to increase patient-centredness in treatment decisions, so shared decision-making can become a reality. More research is needed to design multifaceted implementation strategies to support patients and healthcare professionals to increase patient-centredness throughout treatment personalisation.
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institution Kabale University
issn 2044-6055
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spelling doaj-art-17715ecc029b422a8de0dba5710149332025-01-24T02:25:10ZengBMJ Publishing GroupBMJ Open2044-60552022-06-0112610.1136/bmjopen-2021-058303Making space for patients’ preferences in precision medicine: a qualitative study exploring perspectives of patients with rheumatoid arthritisBente Appel Esbensen0Karin Schölin Bywall1Jennifer Viberg Johansson2Inger Erlandsson3Marie Heidenvall4Marta Lason5Department of Clinical Medicine, University of Copenhagen, Kobenhavn, DenmarkCentre for Research Ethics & Bioethics, Uppsala Universitet, Uppsala, SwedenCentre for Research Ethics & Bioethics, Uppsala Universitet, Uppsala, SwedenSwedish Rheumatism Association, Stockholm, SwedenSwedish Rheumatism Association, Stockholm, SwedenElsa Science, Stockholm, SwedenObjective Precision medicine in rheumatoid arthritis (RA) creates new opportunities to involve patients in early identification of accurate indicators of health trajectories. The aim of this study was to explore patient perspectives on patient-centredness in precision medicine for RA treatment.Design Semistructured interviews were conducted to explore patients’ perspectives on a new personalised approach to RA treatment. The interview guide was developed together with patient research partners and health care professionals.Setting An invitation to the interviews was sent through a mobile application. The interviews were one-on-one, using an interview guide with open-ended questions. Interviews were conducted digitally (October 2020–February 2021) via Zoom or telephone, depending on each participant’s preferences.Participants Patients with RA (N=12) were purposively recruited. Patients were eligible if they had an RA diagnosis, were aged 18–80 years, and understood and expressed themselves in Swedish. Participants and researchers did not know each other prior to the interviews.Results Participants expressed desires and needs for patients to have an active role in precision medicine by making shared treatment decisions together with a healthcare professional. In order for that to work, patients need information on potential treatment options, an ability to express their preferences, an individual treatment plan and identification of personal treatment goals. Patients also identified two requirements of healthcare professional in precision medicine: a safe environment to express personal matters and two-way communication with healthcare professionals.Conclusion Communication between patients and healthcare professionals needs to be more focused on patients’ individual treatment preferences and expressed needs, in order to increase patient-centredness in treatment decisions, so shared decision-making can become a reality. More research is needed to design multifaceted implementation strategies to support patients and healthcare professionals to increase patient-centredness throughout treatment personalisation.https://bmjopen.bmj.com/content/12/6/e058303.full
spellingShingle Bente Appel Esbensen
Karin Schölin Bywall
Jennifer Viberg Johansson
Inger Erlandsson
Marie Heidenvall
Marta Lason
Making space for patients’ preferences in precision medicine: a qualitative study exploring perspectives of patients with rheumatoid arthritis
BMJ Open
title Making space for patients’ preferences in precision medicine: a qualitative study exploring perspectives of patients with rheumatoid arthritis
title_full Making space for patients’ preferences in precision medicine: a qualitative study exploring perspectives of patients with rheumatoid arthritis
title_fullStr Making space for patients’ preferences in precision medicine: a qualitative study exploring perspectives of patients with rheumatoid arthritis
title_full_unstemmed Making space for patients’ preferences in precision medicine: a qualitative study exploring perspectives of patients with rheumatoid arthritis
title_short Making space for patients’ preferences in precision medicine: a qualitative study exploring perspectives of patients with rheumatoid arthritis
title_sort making space for patients preferences in precision medicine a qualitative study exploring perspectives of patients with rheumatoid arthritis
url https://bmjopen.bmj.com/content/12/6/e058303.full
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