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Patient‐reported symptoms and experience following Guillain‐Barré syndrome and related conditions: Questionnaire development and validation
Background Guillain‐Barré syndrome (GBS) is a rare inflammatory peripheral nerve disorder with variable recovery. Evidence is lacking on experiences of people with GBS and measurement of these experiences. Objective We aimed to develop and validate an instrument to measure experiences of people with...
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Published in: | Health expectations : an international journal of public participation in health care and health policy 2022-02, Vol.25 (1), p.223-231 |
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container_title | Health expectations : an international journal of public participation in health care and health policy |
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creator | Siriwardena, Aloysius Niroshan Akanuwe, Joseph N. A. Botan, Vanessa Laparidou, Despina Curtis, Ffion Jackson, Jennifer Asghar, Zahid B. Hodgson, Timothy L. |
description | Background
Guillain‐Barré syndrome (GBS) is a rare inflammatory peripheral nerve disorder with variable recovery. Evidence is lacking on experiences of people with GBS and measurement of these experiences.
Objective
We aimed to develop and validate an instrument to measure experiences of people with GBS.
Design
We used a cross‐sectional design and online self‐administered questionnaire survey. Question domains, based on a previous systematic review and qualitative study, covered experiences of GBS, symptom severity at each stage, healthcare and factors supporting or hindering recovery. Descriptive, exploratory factor and reliability analyses and multivariable regression analysis were used to investigate the relationships between variables of interest, explore questionnaire reliability and validity and identify factors predicting recovery.
Setting and Participants
People with a previous diagnosis of GBS were recruited through a social media advert.
Results
A total of 291 responders, of different sexes, and marital statuses, were included, with most diagnosed between 2015 and 2019. Factor analysis showed four scales: symptoms, information provided, factors affecting recovery and care received. Positive social interactions, physical activity including physiotherapy and movement, changes made at home and immunoglobulin treatment were important for recovery. Multivariable models showed that immunoglobulin and/or plasma exchange were significant predictors of recovery. Employment and recovery factors (positive interactions, work support and changes at work or home, physical activity and therapy), though associated with recovery, did not reach statistical significance.
Conclusion
The questionnaire demonstrated good internal reliability of scales and subscales and construct validity for people following GBS.
Patient Contribution
Patients were involved in developing and piloting the questionnaire. |
doi_str_mv | 10.1111/hex.13367 |
format | article |
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Guillain‐Barré syndrome (GBS) is a rare inflammatory peripheral nerve disorder with variable recovery. Evidence is lacking on experiences of people with GBS and measurement of these experiences.
Objective
We aimed to develop and validate an instrument to measure experiences of people with GBS.
Design
We used a cross‐sectional design and online self‐administered questionnaire survey. Question domains, based on a previous systematic review and qualitative study, covered experiences of GBS, symptom severity at each stage, healthcare and factors supporting or hindering recovery. Descriptive, exploratory factor and reliability analyses and multivariable regression analysis were used to investigate the relationships between variables of interest, explore questionnaire reliability and validity and identify factors predicting recovery.
Setting and Participants
People with a previous diagnosis of GBS were recruited through a social media advert.
Results
A total of 291 responders, of different sexes, and marital statuses, were included, with most diagnosed between 2015 and 2019. Factor analysis showed four scales: symptoms, information provided, factors affecting recovery and care received. Positive social interactions, physical activity including physiotherapy and movement, changes made at home and immunoglobulin treatment were important for recovery. Multivariable models showed that immunoglobulin and/or plasma exchange were significant predictors of recovery. Employment and recovery factors (positive interactions, work support and changes at work or home, physical activity and therapy), though associated with recovery, did not reach statistical significance.
Conclusion
The questionnaire demonstrated good internal reliability of scales and subscales and construct validity for people following GBS.
Patient Contribution
Patients were involved in developing and piloting the questionnaire.</description><identifier>ISSN: 1369-6513</identifier><identifier>EISSN: 1369-7625</identifier><identifier>DOI: 10.1111/hex.13367</identifier><identifier>PMID: 34597442</identifier><language>eng</language><publisher>England: John Wiley & Sons, Inc</publisher><subject>Change agents ; Civil unions ; Cross-Sectional Studies ; Employment ; Employment status ; Ethnicity ; experiences ; Factor analysis ; Guillain-Barre syndrome ; Guillain-Barre Syndrome - complications ; Guillain-Barre Syndrome - diagnosis ; Guillain-Barre Syndrome - therapy ; Guillain‐Barré syndrome ; Health care ; Hospitals ; Humans ; Illnesses ; Immunoglobulin ; Measurement ; Medical diagnosis ; Original ; Part time employment ; Patient Reported Outcome Measures ; Patients ; patient‐reported experience measure ; Peripheral nerves ; Physical activity ; Physical therapy ; Physiotherapy ; Questionnaires ; Recovery ; Regression analysis ; Reliability ; Reliability analysis ; Reliability aspects ; Reproducibility of Results ; Social factors ; Social interaction ; Social interactions ; Social media ; Social networks ; Statistical analysis ; Statistical significance ; Surveys and Questionnaires ; Systematic review ; Values</subject><ispartof>Health expectations : an international journal of public participation in health care and health policy, 2022-02, Vol.25 (1), p.223-231</ispartof><rights>2021 The Authors. published by John Wiley & Sons Ltd.</rights><rights>2021 The Authors. Health Expectations published by John Wiley & Sons Ltd.</rights><rights>2022. This work is published under http://creativecommons.org/licenses/by/4.0/ (the “License”). Notwithstanding the ProQuest Terms and Conditions, you may use this content in accordance with the terms of the License.</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c5097-aad12ec76a0d56bb40abfd07d3d222014158b99a4917cdf72f6fe8c372cfb0fd3</citedby><cites>FETCH-LOGICAL-c5097-aad12ec76a0d56bb40abfd07d3d222014158b99a4917cdf72f6fe8c372cfb0fd3</cites><orcidid>0000-0003-2564-2096 ; 0000-0002-5427-7422 ; 0000-0002-4322-6742 ; 0000-0001-6843-8568 ; 0000-0003-2484-8201 ; 0000-0003-1583-3913 ; 0000-0003-3156-8881 ; 0000-0002-0860-8892</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://www.proquest.com/docview/2629076090/fulltextPDF?pq-origsite=primo$$EPDF$$P50$$Gproquest$$Hfree_for_read</linktopdf><linktohtml>$$Uhttps://www.proquest.com/docview/2629076090?pq-origsite=primo$$EHTML$$P50$$Gproquest$$Hfree_for_read</linktohtml><link.rule.ids>230,314,727,780,784,885,11562,12846,25753,27924,27925,30999,37012,37013,44590,46052,46476,53791,53793,75126</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/34597442$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Siriwardena, Aloysius Niroshan</creatorcontrib><creatorcontrib>Akanuwe, Joseph N. A.</creatorcontrib><creatorcontrib>Botan, Vanessa</creatorcontrib><creatorcontrib>Laparidou, Despina</creatorcontrib><creatorcontrib>Curtis, Ffion</creatorcontrib><creatorcontrib>Jackson, Jennifer</creatorcontrib><creatorcontrib>Asghar, Zahid B.</creatorcontrib><creatorcontrib>Hodgson, Timothy L.</creatorcontrib><title>Patient‐reported symptoms and experience following Guillain‐Barré syndrome and related conditions: Questionnaire development and validation</title><title>Health expectations : an international journal of public participation in health care and health policy</title><addtitle>Health Expect</addtitle><description>Background
Guillain‐Barré syndrome (GBS) is a rare inflammatory peripheral nerve disorder with variable recovery. Evidence is lacking on experiences of people with GBS and measurement of these experiences.
Objective
We aimed to develop and validate an instrument to measure experiences of people with GBS.
Design
We used a cross‐sectional design and online self‐administered questionnaire survey. Question domains, based on a previous systematic review and qualitative study, covered experiences of GBS, symptom severity at each stage, healthcare and factors supporting or hindering recovery. Descriptive, exploratory factor and reliability analyses and multivariable regression analysis were used to investigate the relationships between variables of interest, explore questionnaire reliability and validity and identify factors predicting recovery.
Setting and Participants
People with a previous diagnosis of GBS were recruited through a social media advert.
Results
A total of 291 responders, of different sexes, and marital statuses, were included, with most diagnosed between 2015 and 2019. Factor analysis showed four scales: symptoms, information provided, factors affecting recovery and care received. Positive social interactions, physical activity including physiotherapy and movement, changes made at home and immunoglobulin treatment were important for recovery. Multivariable models showed that immunoglobulin and/or plasma exchange were significant predictors of recovery. Employment and recovery factors (positive interactions, work support and changes at work or home, physical activity and therapy), though associated with recovery, did not reach statistical significance.
Conclusion
The questionnaire demonstrated good internal reliability of scales and subscales and construct validity for people following GBS.
Patient Contribution
Patients were involved in developing and piloting the questionnaire.</description><subject>Change agents</subject><subject>Civil unions</subject><subject>Cross-Sectional Studies</subject><subject>Employment</subject><subject>Employment status</subject><subject>Ethnicity</subject><subject>experiences</subject><subject>Factor analysis</subject><subject>Guillain-Barre syndrome</subject><subject>Guillain-Barre Syndrome - complications</subject><subject>Guillain-Barre Syndrome - diagnosis</subject><subject>Guillain-Barre Syndrome - therapy</subject><subject>Guillain‐Barré syndrome</subject><subject>Health care</subject><subject>Hospitals</subject><subject>Humans</subject><subject>Illnesses</subject><subject>Immunoglobulin</subject><subject>Measurement</subject><subject>Medical diagnosis</subject><subject>Original</subject><subject>Part time employment</subject><subject>Patient Reported Outcome Measures</subject><subject>Patients</subject><subject>patient‐reported experience measure</subject><subject>Peripheral nerves</subject><subject>Physical activity</subject><subject>Physical therapy</subject><subject>Physiotherapy</subject><subject>Questionnaires</subject><subject>Recovery</subject><subject>Regression analysis</subject><subject>Reliability</subject><subject>Reliability analysis</subject><subject>Reliability aspects</subject><subject>Reproducibility of Results</subject><subject>Social factors</subject><subject>Social interaction</subject><subject>Social interactions</subject><subject>Social media</subject><subject>Social networks</subject><subject>Statistical analysis</subject><subject>Statistical significance</subject><subject>Surveys and Questionnaires</subject><subject>Systematic review</subject><subject>Values</subject><issn>1369-6513</issn><issn>1369-7625</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2022</creationdate><recordtype>article</recordtype><sourceid>24P</sourceid><sourceid>7QJ</sourceid><sourceid>PIMPY</sourceid><sourceid>DOA</sourceid><recordid>eNp1ksFu1DAQhiMEoqVw4AVQJC5w2NZ2YjvmgARVaStVAiSQuFmOPdl65dipnd12bzxCX4Pn4E14EpzdpaJI-OKR559vxqO_KJ5jdIjzObqEm0NcVYw_KPZxxcSMM0If7mJGcbVXPElpgRDmVcMfF3tVTQWva7Jf3H5SowU__vp-G2EIcQRTpnU_jKFPpfKmhJsBYlZoKLvgXLi2fl6eLq1zyvpc9V7F-PNHrvEmhh42NRGcmkA6eGNHG3x6U35eQppCr2yE0sAKXBj63HlTsVLOGjXlnxaPOuUSPNvdB8XXDydfjs9mFx9Pz4_fXcw0RYLPlDKYgOZMIUNZ29ZItZ1B3FSGEIJwjWnTCqFqgbk2HScd66DRFSe6a1FnqoPifMs1QS3kEG2v4loGZeXmIcS5VHG02oFkjahbrmkHRtS6RYrhhhqlCMWU4Rpl1tsta1i2PRidfxWVuwe9n_H2Us7DSjZNLSrGMuDVDhDD1bQo2dukIe_YQ1gmSShvOBNUTL1e_iNdhGX0eVWSMCIQZ2ijer1V6RhSitDdDYORnDwjs2fkxjNZ--Lv6e-Uf0ySBUdbwbV1sP4_SZ6dfNsifwP8dtLj</recordid><startdate>202202</startdate><enddate>202202</enddate><creator>Siriwardena, Aloysius Niroshan</creator><creator>Akanuwe, Joseph N. A.</creator><creator>Botan, Vanessa</creator><creator>Laparidou, Despina</creator><creator>Curtis, Ffion</creator><creator>Jackson, Jennifer</creator><creator>Asghar, Zahid B.</creator><creator>Hodgson, Timothy L.</creator><general>John Wiley & Sons, Inc</general><general>John Wiley and Sons Inc</general><general>Wiley</general><scope>24P</scope><scope>WIN</scope><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>3V.</scope><scope>7QJ</scope><scope>7RV</scope><scope>7T2</scope><scope>7X7</scope><scope>7XB</scope><scope>88E</scope><scope>8C1</scope><scope>8FI</scope><scope>8FJ</scope><scope>8FK</scope><scope>ABUWG</scope><scope>AFKRA</scope><scope>ASE</scope><scope>AZQEC</scope><scope>BENPR</scope><scope>C1K</scope><scope>CCPQU</scope><scope>DWQXO</scope><scope>FPQ</scope><scope>FYUFA</scope><scope>GHDGH</scope><scope>K6X</scope><scope>K9.</scope><scope>KB0</scope><scope>M0S</scope><scope>M1P</scope><scope>NAPCQ</scope><scope>PIMPY</scope><scope>PQEST</scope><scope>PQQKQ</scope><scope>PQUKI</scope><scope>PRINS</scope><scope>7X8</scope><scope>5PM</scope><scope>DOA</scope><orcidid>https://orcid.org/0000-0003-2564-2096</orcidid><orcidid>https://orcid.org/0000-0002-5427-7422</orcidid><orcidid>https://orcid.org/0000-0002-4322-6742</orcidid><orcidid>https://orcid.org/0000-0001-6843-8568</orcidid><orcidid>https://orcid.org/0000-0003-2484-8201</orcidid><orcidid>https://orcid.org/0000-0003-1583-3913</orcidid><orcidid>https://orcid.org/0000-0003-3156-8881</orcidid><orcidid>https://orcid.org/0000-0002-0860-8892</orcidid></search><sort><creationdate>202202</creationdate><title>Patient‐reported symptoms and experience following Guillain‐Barré syndrome and related conditions: Questionnaire development and validation</title><author>Siriwardena, Aloysius Niroshan ; Akanuwe, Joseph N. A. ; Botan, Vanessa ; Laparidou, Despina ; Curtis, Ffion ; Jackson, Jennifer ; Asghar, Zahid B. ; Hodgson, Timothy L.</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c5097-aad12ec76a0d56bb40abfd07d3d222014158b99a4917cdf72f6fe8c372cfb0fd3</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2022</creationdate><topic>Change agents</topic><topic>Civil unions</topic><topic>Cross-Sectional Studies</topic><topic>Employment</topic><topic>Employment status</topic><topic>Ethnicity</topic><topic>experiences</topic><topic>Factor analysis</topic><topic>Guillain-Barre syndrome</topic><topic>Guillain-Barre Syndrome - complications</topic><topic>Guillain-Barre Syndrome - diagnosis</topic><topic>Guillain-Barre Syndrome - therapy</topic><topic>Guillain‐Barré syndrome</topic><topic>Health care</topic><topic>Hospitals</topic><topic>Humans</topic><topic>Illnesses</topic><topic>Immunoglobulin</topic><topic>Measurement</topic><topic>Medical diagnosis</topic><topic>Original</topic><topic>Part time employment</topic><topic>Patient Reported Outcome Measures</topic><topic>Patients</topic><topic>patient‐reported experience measure</topic><topic>Peripheral nerves</topic><topic>Physical activity</topic><topic>Physical therapy</topic><topic>Physiotherapy</topic><topic>Questionnaires</topic><topic>Recovery</topic><topic>Regression analysis</topic><topic>Reliability</topic><topic>Reliability analysis</topic><topic>Reliability aspects</topic><topic>Reproducibility of Results</topic><topic>Social factors</topic><topic>Social interaction</topic><topic>Social interactions</topic><topic>Social media</topic><topic>Social networks</topic><topic>Statistical analysis</topic><topic>Statistical significance</topic><topic>Surveys and Questionnaires</topic><topic>Systematic review</topic><topic>Values</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Siriwardena, Aloysius Niroshan</creatorcontrib><creatorcontrib>Akanuwe, Joseph N. A.</creatorcontrib><creatorcontrib>Botan, Vanessa</creatorcontrib><creatorcontrib>Laparidou, Despina</creatorcontrib><creatorcontrib>Curtis, Ffion</creatorcontrib><creatorcontrib>Jackson, Jennifer</creatorcontrib><creatorcontrib>Asghar, Zahid B.</creatorcontrib><creatorcontrib>Hodgson, Timothy L.</creatorcontrib><collection>Wiley Online Library Open Access</collection><collection>Wiley Online Library Free Content</collection><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>ProQuest Central (Corporate)</collection><collection>Applied Social Sciences Index & Abstracts (ASSIA)</collection><collection>Nursing & Allied Health Database</collection><collection>Health and Safety Science Abstracts (Full archive)</collection><collection>Health & Medical Collection</collection><collection>ProQuest Central (purchase pre-March 2016)</collection><collection>Medical Database (Alumni Edition)</collection><collection>Public Health Database</collection><collection>Hospital Premium Collection</collection><collection>Hospital Premium Collection (Alumni Edition)</collection><collection>ProQuest Central (Alumni) (purchase pre-March 2016)</collection><collection>ProQuest Central (Alumni Edition)</collection><collection>ProQuest Central UK/Ireland</collection><collection>British Nursing Index</collection><collection>ProQuest Central Essentials</collection><collection>ProQuest Central</collection><collection>Environmental Sciences and Pollution Management</collection><collection>ProQuest One Community College</collection><collection>ProQuest Central Korea</collection><collection>British Nursing Index (BNI) (1985 to Present)</collection><collection>Health Research Premium Collection</collection><collection>Health Research Premium Collection (Alumni)</collection><collection>British Nursing Index</collection><collection>ProQuest Health & Medical Complete (Alumni)</collection><collection>Nursing & Allied Health Database (Alumni Edition)</collection><collection>Health & Medical Collection (Alumni Edition)</collection><collection>Medical Database</collection><collection>Nursing & Allied Health Premium</collection><collection>Publicly Available Content Database</collection><collection>ProQuest One Academic Eastern Edition (DO NOT USE)</collection><collection>ProQuest One Academic</collection><collection>ProQuest One Academic UKI Edition</collection><collection>ProQuest Central China</collection><collection>MEDLINE - Academic</collection><collection>PubMed Central (Full Participant titles)</collection><collection>DOAJ Directory of Open Access Journals</collection><jtitle>Health expectations : an international journal of public participation in health care and health policy</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Siriwardena, Aloysius Niroshan</au><au>Akanuwe, Joseph N. A.</au><au>Botan, Vanessa</au><au>Laparidou, Despina</au><au>Curtis, Ffion</au><au>Jackson, Jennifer</au><au>Asghar, Zahid B.</au><au>Hodgson, Timothy L.</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Patient‐reported symptoms and experience following Guillain‐Barré syndrome and related conditions: Questionnaire development and validation</atitle><jtitle>Health expectations : an international journal of public participation in health care and health policy</jtitle><addtitle>Health Expect</addtitle><date>2022-02</date><risdate>2022</risdate><volume>25</volume><issue>1</issue><spage>223</spage><epage>231</epage><pages>223-231</pages><issn>1369-6513</issn><eissn>1369-7625</eissn><abstract>Background
Guillain‐Barré syndrome (GBS) is a rare inflammatory peripheral nerve disorder with variable recovery. Evidence is lacking on experiences of people with GBS and measurement of these experiences.
Objective
We aimed to develop and validate an instrument to measure experiences of people with GBS.
Design
We used a cross‐sectional design and online self‐administered questionnaire survey. Question domains, based on a previous systematic review and qualitative study, covered experiences of GBS, symptom severity at each stage, healthcare and factors supporting or hindering recovery. Descriptive, exploratory factor and reliability analyses and multivariable regression analysis were used to investigate the relationships between variables of interest, explore questionnaire reliability and validity and identify factors predicting recovery.
Setting and Participants
People with a previous diagnosis of GBS were recruited through a social media advert.
Results
A total of 291 responders, of different sexes, and marital statuses, were included, with most diagnosed between 2015 and 2019. Factor analysis showed four scales: symptoms, information provided, factors affecting recovery and care received. Positive social interactions, physical activity including physiotherapy and movement, changes made at home and immunoglobulin treatment were important for recovery. Multivariable models showed that immunoglobulin and/or plasma exchange were significant predictors of recovery. Employment and recovery factors (positive interactions, work support and changes at work or home, physical activity and therapy), though associated with recovery, did not reach statistical significance.
Conclusion
The questionnaire demonstrated good internal reliability of scales and subscales and construct validity for people following GBS.
Patient Contribution
Patients were involved in developing and piloting the questionnaire.</abstract><cop>England</cop><pub>John Wiley & Sons, Inc</pub><pmid>34597442</pmid><doi>10.1111/hex.13367</doi><tpages>9</tpages><orcidid>https://orcid.org/0000-0003-2564-2096</orcidid><orcidid>https://orcid.org/0000-0002-5427-7422</orcidid><orcidid>https://orcid.org/0000-0002-4322-6742</orcidid><orcidid>https://orcid.org/0000-0001-6843-8568</orcidid><orcidid>https://orcid.org/0000-0003-2484-8201</orcidid><orcidid>https://orcid.org/0000-0003-1583-3913</orcidid><orcidid>https://orcid.org/0000-0003-3156-8881</orcidid><orcidid>https://orcid.org/0000-0002-0860-8892</orcidid><oa>free_for_read</oa></addata></record> |
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source | Applied Social Sciences Index & Abstracts (ASSIA); Wiley Online Library Open Access; Publicly Available Content Database; PubMed Central |
subjects | Change agents Civil unions Cross-Sectional Studies Employment Employment status Ethnicity experiences Factor analysis Guillain-Barre syndrome Guillain-Barre Syndrome - complications Guillain-Barre Syndrome - diagnosis Guillain-Barre Syndrome - therapy Guillain‐Barré syndrome Health care Hospitals Humans Illnesses Immunoglobulin Measurement Medical diagnosis Original Part time employment Patient Reported Outcome Measures Patients patient‐reported experience measure Peripheral nerves Physical activity Physical therapy Physiotherapy Questionnaires Recovery Regression analysis Reliability Reliability analysis Reliability aspects Reproducibility of Results Social factors Social interaction Social interactions Social media Social networks Statistical analysis Statistical significance Surveys and Questionnaires Systematic review Values |
title | Patient‐reported symptoms and experience following Guillain‐Barré syndrome and related conditions: Questionnaire development and validation |
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