Do people with multiple sclerosis want to discuss their long-term prognosis? A nationwide study in Argentina
Do people with multiple sclerosis want to discuss their long-term prognosis? A nationwide study in Argentina
Background: Demographics, clinical and imaging prognostic factors have been reported in large series of people with multiple sclerosis (PwMS). However, personalized long-term prognosis (LTP) is varied and uncertain in each particular case. Currently, there is limited evidence on how PwMS feel about prognosis communication and their coping strategies. Therefore, we aimed to assess the prognosis communication experiences and preferences of PwMS. In addition, we investigated whether demographic, clinical and neuropsychological factors are associated with prognosis information preferences. Methods: A cross-sectional online survey that included 301 PwMS from Argentina was carried out. Data on self-administered surveys including prognosis in MS questionnaire (PIMS study, evaluating prognosis communication experiences, attitudes and preferences), MS impact scale (MSIS-29), Brief Coping Orientation to Problems Experienced (COPE-28) inventory, Fatigue Severity Scale and Expanded Disability Status Scale (EDSS) were evaluated. A logistic regression model was performed. Results: 21.5% of responders never had discussed LTP with their neurologist and 47.1% lacked clarity about their LTP. PwMS had similar preference for LTP information at diagnosis, survey (current) or in the future (72.4%, 71.7%, 73.4%, respectively). Most participants (94.3%) wanted to be informed about LTP tool availability, and 61.7% wanted to know more about conversion to SPMS. Older age (p = 0.03) and lower fatigue (p = 0.04), and COPE denial (p < 0.01), humour (p = 0.03), self-blame (p < 0.01) and venting (p = 0.02) were associated with lower LTP information preference. Trends were observed for higher MS duration (p = 0.06), physical (p = 0.07) and psychological (p = 0.08) impact. Fatigue and COPE denial were predictors of higher LTP information preference in a multivariate model. Conclusion: PwMS from Argentina want more discussion and clarification about their LTP. Several physical and neuropsychological factors predict LTP information preference.
Coping, Impact of multiple sclerosis, Latin American, Long-term prognosis, Multiple sclerosis
Carnero Contentti, Edgar
bed5fba2-ebc9-4026-b9a8-e68c29bb0485
López, Pablo A.
4322b1d1-b2a5-4734-8096-2e99d78dbbb5
Pettinicchi, Juan Pablo
5e65e980-fa76-4a12-bf85-a638a435dcf9
Alonso, Ricardo
24b09276-99a1-4b89-a501-488e88504fc2
Tizio, Santiago
a2c875b0-e9c6-440a-b385-d6584278a873
Tkachuk, Verónica
68f554fc-b271-4c4b-986a-c19d9fe79b7e
Caride, Alejandro
a030cb5a-a1ad-4e54-b178-4d2ab028fc5d
Galea, Ian
66209a2f-f7e6-4d63-afe4-e9299f156f0b
January 2020
Carnero Contentti, Edgar
bed5fba2-ebc9-4026-b9a8-e68c29bb0485
López, Pablo A.
4322b1d1-b2a5-4734-8096-2e99d78dbbb5
Pettinicchi, Juan Pablo
5e65e980-fa76-4a12-bf85-a638a435dcf9
Alonso, Ricardo
24b09276-99a1-4b89-a501-488e88504fc2
Tizio, Santiago
a2c875b0-e9c6-440a-b385-d6584278a873
Tkachuk, Verónica
68f554fc-b271-4c4b-986a-c19d9fe79b7e
Caride, Alejandro
a030cb5a-a1ad-4e54-b178-4d2ab028fc5d
Galea, Ian
66209a2f-f7e6-4d63-afe4-e9299f156f0b
Carnero Contentti, Edgar, López, Pablo A., Pettinicchi, Juan Pablo, Alonso, Ricardo, Tizio, Santiago, Tkachuk, Verónica, Caride, Alejandro and Galea, Ian
(2020)
Do people with multiple sclerosis want to discuss their long-term prognosis? A nationwide study in Argentina.
Multiple Sclerosis and Related Disorders, 37, [101445].
(doi:10.1016/j.msard.2019.101445).
Abstract
Background: Demographics, clinical and imaging prognostic factors have been reported in large series of people with multiple sclerosis (PwMS). However, personalized long-term prognosis (LTP) is varied and uncertain in each particular case. Currently, there is limited evidence on how PwMS feel about prognosis communication and their coping strategies. Therefore, we aimed to assess the prognosis communication experiences and preferences of PwMS. In addition, we investigated whether demographic, clinical and neuropsychological factors are associated with prognosis information preferences. Methods: A cross-sectional online survey that included 301 PwMS from Argentina was carried out. Data on self-administered surveys including prognosis in MS questionnaire (PIMS study, evaluating prognosis communication experiences, attitudes and preferences), MS impact scale (MSIS-29), Brief Coping Orientation to Problems Experienced (COPE-28) inventory, Fatigue Severity Scale and Expanded Disability Status Scale (EDSS) were evaluated. A logistic regression model was performed. Results: 21.5% of responders never had discussed LTP with their neurologist and 47.1% lacked clarity about their LTP. PwMS had similar preference for LTP information at diagnosis, survey (current) or in the future (72.4%, 71.7%, 73.4%, respectively). Most participants (94.3%) wanted to be informed about LTP tool availability, and 61.7% wanted to know more about conversion to SPMS. Older age (p = 0.03) and lower fatigue (p = 0.04), and COPE denial (p < 0.01), humour (p = 0.03), self-blame (p < 0.01) and venting (p = 0.02) were associated with lower LTP information preference. Trends were observed for higher MS duration (p = 0.06), physical (p = 0.07) and psychological (p = 0.08) impact. Fatigue and COPE denial were predictors of higher LTP information preference in a multivariate model. Conclusion: PwMS from Argentina want more discussion and clarification about their LTP. Several physical and neuropsychological factors predict LTP information preference.
Text
Carnero Contentti E et al 2019 postprint
- Accepted Manuscript
More information
Accepted/In Press date: 12 October 2019
e-pub ahead of print date: 16 October 2019
Published date: January 2020
Additional Information:
Funding Information:
The authors thank Laura Dennison, Martina Brown and Sarah Kirby from the University of Southampton (United Kingdom), since this project was based on their published experience. In addition, we thank the participants for responding to the survey and Asociaci?n de Lucha Contra la Esclerosis M?ltiple for promoting the survey.
Publisher Copyright:
© 2019 Elsevier B.V.
Keywords:
Coping, Impact of multiple sclerosis, Latin American, Long-term prognosis, Multiple sclerosis
Identifiers
Local EPrints ID: 435352
URI: http://eprints.soton.ac.uk/id/eprint/435352
ISSN: 2211-0348
PURE UUID: b91d95c9-5eb2-412b-b837-3fbd5d0eec13
Catalogue record
Date deposited: 31 Oct 2019 17:30
Last modified: 17 Mar 2024 02:57
Export record
Altmetrics
Contributors
Author:
Edgar Carnero Contentti
Author:
Pablo A. López
Author:
Juan Pablo Pettinicchi
Author:
Ricardo Alonso
Author:
Santiago Tizio
Author:
Verónica Tkachuk
Author:
Alejandro Caride
Download statistics
Downloads from ePrints over the past year. Other digital versions may also be available to download e.g. from the publisher's website.
View more statistics
