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

10.1016/j.msard.2021.103459

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

February 2022

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).

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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