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A patient-centred evaluation of phantom skin wetness as a sensory symptom in people with Multiple Sclerosis

A patient-centred evaluation of phantom skin wetness as a sensory symptom in people with Multiple Sclerosis
A patient-centred evaluation of phantom skin wetness as a sensory symptom in people with Multiple Sclerosis
Background: A noticeable but unknown proportion of people with multiple sclerosis (pwMS) report the sudden experience of wetness on a dry skin site, i.e., phantom wetness. Yet, we lack patient-centred investigations on the prevalence and subjective experience of this uncomfortable symptom.
Objectives: To assess the prevalence of phantom wetness in pwMS, its association with individual factors, and subjective experience.Methods757 pwMS completed an online survey assessing the frequency and subjective experience of phantom wetness. We calculated descriptive statistics and odd ratios and performed a thematic analysis to extract a patient-centred description of phantom wetness.Results220 participants reported experiencing phantom wetness (29%). Females and those affected by Relapsing Remitting (RR) MS were 2.17 [1.39, 3.34] (p<0.001) and 1.73 [1.23, 2.40] (p = 0.001) times as likely to experience phantom wetness as males and those not affected by RR MS, respectively. The thematic analysis indicated phantom wetness is more often experienced as water trickling on the skin of the lower limb. Conclusion: Phantom wetness is a paraesthesia occurring in almost a third of the sample surveyed. Clinicians are encouraged to discuss with pwMS to validate their experience as a genuine symptom. Using the patient-generated language we report may help facilitate such conversations.
Multiple sclerosis, Personal experience, Phantom wetness
2211-0348
Christogianni, Aikaterini
696c8a6c-30d6-4fb1-b7e4-70d45997180b
Bibb, Richard
249dd806-b589-48d1-8568-b28b88a8989c
Filtness, Ashleigh J.
e5f1053c-4a84-4bf5-9586-e88057fca20e
Filingeri, Davide
42502a34-e7e6-4b49-b304-ce2ae0bf7b24
Christogianni, Aikaterini
696c8a6c-30d6-4fb1-b7e4-70d45997180b
Bibb, Richard
249dd806-b589-48d1-8568-b28b88a8989c
Filtness, Ashleigh J.
e5f1053c-4a84-4bf5-9586-e88057fca20e
Filingeri, Davide
42502a34-e7e6-4b49-b304-ce2ae0bf7b24

Christogianni, Aikaterini, Bibb, Richard, Filtness, Ashleigh J. and Filingeri, Davide (2022) A patient-centred evaluation of phantom skin wetness as a sensory symptom in people with Multiple Sclerosis. Multiple Sclerosis and Related Disorders, 58, [103459]. (doi:10.1016/j.msard.2021.103459).

Record type: Article

Abstract

Background: A noticeable but unknown proportion of people with multiple sclerosis (pwMS) report the sudden experience of wetness on a dry skin site, i.e., phantom wetness. Yet, we lack patient-centred investigations on the prevalence and subjective experience of this uncomfortable symptom.
Objectives: To assess the prevalence of phantom wetness in pwMS, its association with individual factors, and subjective experience.Methods757 pwMS completed an online survey assessing the frequency and subjective experience of phantom wetness. We calculated descriptive statistics and odd ratios and performed a thematic analysis to extract a patient-centred description of phantom wetness.Results220 participants reported experiencing phantom wetness (29%). Females and those affected by Relapsing Remitting (RR) MS were 2.17 [1.39, 3.34] (p<0.001) and 1.73 [1.23, 2.40] (p = 0.001) times as likely to experience phantom wetness as males and those not affected by RR MS, respectively. The thematic analysis indicated phantom wetness is more often experienced as water trickling on the skin of the lower limb. Conclusion: Phantom wetness is a paraesthesia occurring in almost a third of the sample surveyed. Clinicians are encouraged to discuss with pwMS to validate their experience as a genuine symptom. Using the patient-generated language we report may help facilitate such conversations.

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Christogianni2021_accepted - Accepted Manuscript
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Accepted/In Press date: 4 December 2021
e-pub ahead of print date: 6 December 2021
Published date: February 2022
Additional Information: Funding Information: We collected both qualitative and quantitative data on phantom wetness in pwMS via an anonymous online survey, following best practice design (Andrews et al., 2003). Participant recruitment occurred via social media posting supported by MS charities and MS groups worldwide. All participants provided an anonymous informed consent prior to participation, the latter being a pre-requisite to access the online survey. The study received full ethical approval by the Human Participants Sub-Committee of Loughborough University (proposal #R18-P200). Data collection took place between the 23rd of January and 9th of August 2019.The authors wish to thank the participants to this study, and Dr Nikos Evangelou (Nottingham University) for his support to this study. The research was supported by Loughborough University in the UK. The data presented in the study are available from the corresponding author upon reasonable request. Not applicable. Informed consent was obtained from all respondents prior to fill in the online survey and the Ethical approval was granted by the Loughborough University Human Ethics Sub-Committee in the UK. Funding Information: The research was supported by Loughborough University in the UK. Publisher Copyright: © 2021 Elsevier B.V.
Keywords: Multiple sclerosis, Personal experience, Phantom wetness

Identifiers

Local EPrints ID: 453111
URI: http://eprints.soton.ac.uk/id/eprint/453111
ISSN: 2211-0348
PURE UUID: 58d2424b-4bfa-4f9a-9dc9-8c33c7a06231
ORCID for Davide Filingeri: ORCID iD orcid.org/0000-0001-5652-395X

Catalogue record

Date deposited: 08 Jan 2022 21:33
Last modified: 06 Dec 2022 05:01

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Contributors

Author: Aikaterini Christogianni
Author: Richard Bibb
Author: Ashleigh J. Filtness

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