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How do people with multiple sclerosis experience prognostic uncertainty and prognosis communication? A qualitative study

How do people with multiple sclerosis experience prognostic uncertainty and prognosis communication? A qualitative study
How do people with multiple sclerosis experience prognostic uncertainty and prognosis communication? A qualitative study
Background: Disease progression in multiple sclerosis (MS) is highly variable and predicting prognosis is notoriously challenging. Patients’ prognosis beliefs, responses to prognostic uncertainty and experiences of prognosis-related communication with healthcare professionals (HCPs) have received little study. These issues have implications for patients’ psychological adjustment and are important in the context of the recent development of personalised prognosis forecasting tools. This study explored patient perspectives on the experience of prognostic uncertainty, the formation of expectations about personal prognosis and the nature of received and desired prognosis communication.

Methods: 15 MS patients participated in in-depth semi-structured interviews which were analysed using inductive thematic analysis.

Results: Six themes captured key aspects of the data: Experiencing unsatisfactory communication with HCPs, Appreciating and accepting prognostic uncertainty, Trying to stay present-focused, Forming and editing personal prognosis beliefs, Ambivalence towards forecasting the future, and Prognosis information delivery. MS patients report having minimal communication with HCPs about prognosis. Over time MS patients appear to develop expectations about their disease trajectories, but do so with minimal HCP input. Provision of prognosis information by HCPs seems to run counter to patients’ attempts to remain present-focused. Patients are often ambivalent about prognosis forecasting and consider it emotionally dangerous and of circumscribed usefulness.

Conclusions: HCPs must carefully consider whether, when and how to share prognosis information with patients; specific training may be beneficial. Future research should confirm findings about limited HCP-patient communication, distinguish predictors of patients’ attitudes towards prognostication and identify circumstances under which prognostic forecasting benefits patients.
1932-6203
1-24
Dennison, Laura
15c399cb-9a81-4948-8906-21944c033c20
McCloy-Smith, Ellen
0881d2f0-916c-4e20-8cfa-e78b7f50a0d8
Bradbury, Katherine
87fce0b9-d9c5-42b4-b041-bffeb4430863
Galea, Ian
66209a2f-f7e6-4d63-afe4-e9299f156f0b
Dennison, Laura
15c399cb-9a81-4948-8906-21944c033c20
McCloy-Smith, Ellen
0881d2f0-916c-4e20-8cfa-e78b7f50a0d8
Bradbury, Katherine
87fce0b9-d9c5-42b4-b041-bffeb4430863
Galea, Ian
66209a2f-f7e6-4d63-afe4-e9299f156f0b

Dennison, Laura, McCloy-Smith, Ellen, Bradbury, Katherine and Galea, Ian (2016) How do people with multiple sclerosis experience prognostic uncertainty and prognosis communication? A qualitative study. PLoS ONE, 1-24. (doi:10.1371/journal.pone.0158982).

Record type: Article

Abstract

Background: Disease progression in multiple sclerosis (MS) is highly variable and predicting prognosis is notoriously challenging. Patients’ prognosis beliefs, responses to prognostic uncertainty and experiences of prognosis-related communication with healthcare professionals (HCPs) have received little study. These issues have implications for patients’ psychological adjustment and are important in the context of the recent development of personalised prognosis forecasting tools. This study explored patient perspectives on the experience of prognostic uncertainty, the formation of expectations about personal prognosis and the nature of received and desired prognosis communication.

Methods: 15 MS patients participated in in-depth semi-structured interviews which were analysed using inductive thematic analysis.

Results: Six themes captured key aspects of the data: Experiencing unsatisfactory communication with HCPs, Appreciating and accepting prognostic uncertainty, Trying to stay present-focused, Forming and editing personal prognosis beliefs, Ambivalence towards forecasting the future, and Prognosis information delivery. MS patients report having minimal communication with HCPs about prognosis. Over time MS patients appear to develop expectations about their disease trajectories, but do so with minimal HCP input. Provision of prognosis information by HCPs seems to run counter to patients’ attempts to remain present-focused. Patients are often ambivalent about prognosis forecasting and consider it emotionally dangerous and of circumscribed usefulness.

Conclusions: HCPs must carefully consider whether, when and how to share prognosis information with patients; specific training may be beneficial. Future research should confirm findings about limited HCP-patient communication, distinguish predictors of patients’ attitudes towards prognostication and identify circumstances under which prognostic forecasting benefits patients.

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More information

Accepted/In Press date: 27 June 2016
e-pub ahead of print date: 19 July 2016
Published date: 2016
Organisations: Clinical & Experimental Sciences

Identifiers

Local EPrints ID: 397674
URI: https://eprints.soton.ac.uk/id/eprint/397674
ISSN: 1932-6203
PURE UUID: 3d9bdc91-969e-47a3-bca9-350f69b66ac3
ORCID for Laura Dennison: ORCID iD orcid.org/0000-0003-0122-6610
ORCID for Katherine Bradbury: ORCID iD orcid.org/0000-0001-5513-7571
ORCID for Ian Galea: ORCID iD orcid.org/0000-0002-1268-5102

Catalogue record

Date deposited: 05 Jul 2016 09:39
Last modified: 15 Aug 2019 00:46

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