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Open Access 10-10-2023 | Multiple Sclerosis | Original Article

User appraisal of a booklet for advance care planning in multiple sclerosis: a multicenter, qualitative Italian study

Authors: Andrea Giordano, Ludovica De Panfilis, Simone Veronese, Michela Bruzzone, Marta Cascioli, Mariangela Farinotti, Ambra Mara Giovannetti, Maria Grazia Grasso, Paola Kruger, Alessandra Lugaresi, Leigh Manson, Marta Perin, Eugenio Pucci, Claudio Solaro, Luca Ghirotto, Alessandra Solari

Published in: Neurological Sciences | Issue 3/2024

Abstract

Objectives

Implementation of advance care planning (ACP) in people with progressive multiple sclerosis (PwPMS) is limited. We aimed to involve users (PwPMS, significant others, and healthcare professionals involved in PwPMS care) in the evaluation and refinement of a booklet to be used during the ACP conversations.

Methods

This qualitative study consisted of cognitive interviews with PwPMS and significant others and a focus group with healthcare professionals from three Italian centers. We analyzed the interviews using the framework method and the focus group using thematic analysis.

Results

We interviewed 10 PwPMS (3 women; median age 54 years; median Expanded Disability Status Scale score 6.0) and three significant others (2 women; 2 spouses and one daughter). The analysis yielded three themes: booklet comprehensibility and clarity, content acceptability and emotional impact, and suggestions for improvement. Twelve healthcare professionals (7 neurologists, 3 psychologists, one nurse, and one physiotherapist) participated in the focus group, whose analysis identified two themes: booklet’s content importance and clarity and challenges to ACP implementation. Based on analysis results, we revised the booklet (text, layout, and pictures) and held a second-round interviews with two PwPMS and one significant other. The interviewees agreed on the revisions but reaffirmed their difficulty in dealing with the topic and the need for a physician when using the booklet.

Conclusions

Appraisal of the booklet was instrumental in improving its acceptability and understandability before using it in the ConCure-SM feasibility trial. Furthermore, our data reveal a lack of familiarity with ACP practice in the Italian context.

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Title: User appraisal of a booklet for advance care planning in multiple sclerosis: a multicenter, qualitative Italian study
Authors: Andrea Giordano
Ludovica De Panfilis
Simone Veronese
Michela Bruzzone
Marta Cascioli
Mariangela Farinotti
Ambra Mara Giovannetti
Maria Grazia Grasso
Paola Kruger
Alessandra Lugaresi
Leigh Manson
Marta Perin
Eugenio Pucci
Claudio Solaro
Luca Ghirotto
Alessandra Solari
Publication date: 10-10-2023
Publisher: Springer International Publishing
Keywords: Multiple Sclerosis
Care
Published in: Neurological Sciences / Issue 3/2024
Print ISSN: 1590-1874
Electronic ISSN: 1590-3478
DOI: https://doi.org/10.1007/s10072-023-07087-y

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User appraisal of a booklet for advance care planning in multiple sclerosis: a multicenter, qualitative Italian study

Abstract

Objectives

Methods

Results

Conclusions

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Abstract

Objectives

Methods

Results

Conclusions

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