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Experience of an information aid for newly diagnosed multiple sclerosis patients: a qualitative study on the SIMS-Trial.

ABSTRACT: The SIMS-Trial (ISRCTN81072971) proved the effectiveness, in terms of patient's knowledge and care satisfaction, of an add-on information aid (personal interview with a physician using a navigable CD and take-home booklet) in 120 newly diagnosed patients with multiple sclerosis (MS) from five Italian centres.To scrutinize the experience of SIMS-Trial participants in order to gain better understanding of the effectiveness of the information aid and its components.We performed (i) nine individual semi-structured interviews with a purposeful sample of SIMS-Trial patients who received the information aid, (ii) focus group meeting (FGM) with the physicians who conducted the personal interview, and (iii) FGM with patients' caring neurologists.Patients' experience with the information aid was positive as it enhanced their understanding of their disease, being viewed as a guided tour of their medical condition. The physicians who conducted the personal interviews were also positive in their overall evaluation but noted an initial difficulty in using the CD. The caring neurologists had limited direct experience of the aid, and their views were confined to utility of the information aid in general. All participants considered the combination of personal interview, CD navigation and take-home booklet essential, but urged a more flexible scheduling of the personal interview. It also emerged that some content required revision and that the aid was unsuitable for patients with primary progressive MS.The results of the study further support the value of the aid and also provide important indications for improving it and refining indications for use.

SUBMITTER: Borreani C

PROVIDER: S-EPMC5060699 | biostudies-literature | 2014 Feb

REPOSITORIES: biostudies-literature

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Experience of an information aid for newly diagnosed multiple sclerosis patients: a qualitative study on the SIMS-Trial.

Borreani Claudia C Giordano Andrea A Falautano Monica M Lugaresi Alessandra A Martinelli Vittorio V Granella Franco F Tortorella Carla C Plasmati Imma I Radaelli Marta M Farina Deborah D Dalla Bella Eleonora E Bianchi Elisabetta E Acquarone Nicola N Miccinesi Guido G Solari Alessandra A

Health expectations : an international journal of public participation in health care and health policy 20111101 1

<h4>Background</h4>The SIMS-Trial (ISRCTN81072971) proved the effectiveness, in terms of patient's knowledge and care satisfaction, of an add-on information aid (personal interview with a physician using a navigable CD and take-home booklet) in 120 newly diagnosed patients with multiple sclerosis (MS) from five Italian centres.<h4>Objective</h4>To scrutinize the experience of SIMS-Trial participants in order to gain better understanding of the effectiveness of the information aid and its compone ...[more]

PMID: 22040528

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Project description:BackgroundMultiple sclerosis (MS) patients often struggle with treatment decisions, in part due to the increasing number of approved disease modifying therapies, each with different characteristics, and also since physicians can struggle to identify which of these characteristics matter most to each individual patient. Decision uncertainty can contribute to late treatment initiation and treatment non-adherence-causes of 'undertreatment' in MS. An interactive online patient decision aid that informs patients of their options, considers their individual preferences and goals, and facilitates conversations with their physicians, could improve how patients with relapsing forms of MS make evidence-based treatment decisions.ObjectiveTo develop and evaluate a prototype patient decision aid (PtDA) for first-line disease modifying therapies for relapsing-remitting multiple sclerosis.MethodsInformed by previous studies and International Patient Decision Aid Standards guidelines, a prototype PtDA was developed for patients with relapsing multiple sclerosis considering first line treatment. Patients with relapsing multiple sclerosis were recruited from the University of British Columbia's Multiple Sclerosis Clinic to participate in either an online survey or a focus group. Online survey participants completed the PtDA, followed by measures of acceptability, usability, and preparedness for decision-making, and provided general feedback. Focus group participants assessed usability of the revised PtDA. The analysis of qualitative and quantitative data led to improvements of the PtDA prototype.ResultsThe prototype PtDA received high ratings for acceptability and usability, and after its use, participants reported high-levels of preparedness for decision-making. Analysis of all qualitative data identified three key themes: the need for credible information; the usefulness of the PtDA; and the importance of normalizing and sharing experiences. Nine content areas were identified for revision. Overall, participants found the PtDA to be a valuable tool for facilitating treatment decisions.ConclusionsThis mixed methods study has led to the development of a PtDA that can support patients with RRMS as they make treatment decisions. Future studies will assess the feasibility of implementation and the impact of the PtDA on both the timely treatment initiation and longer-term adherence.

Dataset Information

Experience of an information aid for newly diagnosed multiple sclerosis patients: a qualitative study on the SIMS-Trial.

Publications

Experience of an information aid for newly diagnosed multiple sclerosis patients: a qualitative study on the SIMS-Trial.

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