Patient‐reported symptoms and experience following Guillain‐Barré syndrome and related conditions: Questionnaire development and validation
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 pe...
| Main Authors: | , , , , , , , |
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| Format: | Article |
| Language: | English |
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Wiley
2022-02-01
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| Series: | Health Expectations |
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| Online Access: | https://doi.org/10.1111/hex.13367 |
| _version_ | 1819278256241639424 |
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| author | Aloysius Niroshan Siriwardena Joseph N. A. Akanuwe Vanessa Botan Despina Laparidou Ffion Curtis Jennifer Jackson Zahid B. Asghar Timothy L. Hodgson |
| author_facet | Aloysius Niroshan Siriwardena Joseph N. A. Akanuwe Vanessa Botan Despina Laparidou Ffion Curtis Jennifer Jackson Zahid B. Asghar Timothy L. Hodgson |
| author_sort | Aloysius Niroshan Siriwardena |
| collection | DOAJ |
| description | 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. |
| first_indexed | 2024-12-24T00:09:07Z |
| format | Article |
| id | doaj.art-6894b7c5fed94cb0a6185daa25156140 |
| institution | Directory Open Access Journal |
| issn | 1369-6513 1369-7625 |
| language | English |
| last_indexed | 2024-12-24T00:09:07Z |
| publishDate | 2022-02-01 |
| publisher | Wiley |
| record_format | Article |
| series | Health Expectations |
| spelling | doaj.art-6894b7c5fed94cb0a6185daa251561402022-12-21T17:24:55ZengWileyHealth Expectations1369-65131369-76252022-02-0125122323110.1111/hex.13367Patient‐reported symptoms and experience following Guillain‐Barré syndrome and related conditions: Questionnaire development and validationAloysius Niroshan Siriwardena0Joseph N. A. Akanuwe1Vanessa Botan2Despina Laparidou3Ffion Curtis4Jennifer Jackson5Zahid B. Asghar6Timothy L. Hodgson7Community and Health Research Unit (CaHRU), School of Health and Social Care University of Lincoln Lincoln UKCommunity and Health Research Unit (CaHRU), School of Health and Social Care University of Lincoln Lincoln UKCommunity and Health Research Unit (CaHRU), School of Health and Social Care University of Lincoln Lincoln UKCommunity and Health Research Unit (CaHRU), School of Health and Social Care University of Lincoln Lincoln UKCentre for Ethnic Health Research, Leicester Diabetes Centre University of Leicester Leicester UKCommunity Orgnisation Group, Lincoln International Business School University of Lincoln Lincoln UKCommunity and Health Research Unit (CaHRU), School of Health and Social Care University of Lincoln Lincoln UKPerception Action Cognition, School of Psychology University of Lincoln Lincoln UKAbstract 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.https://doi.org/10.1111/hex.13367experiencesGuillain‐Barré syndromepatientspatient‐reported experience measurerecovery |
| spellingShingle | Aloysius Niroshan Siriwardena Joseph N. A. Akanuwe Vanessa Botan Despina Laparidou Ffion Curtis Jennifer Jackson Zahid B. Asghar Timothy L. Hodgson Patient‐reported symptoms and experience following Guillain‐Barré syndrome and related conditions: Questionnaire development and validation Health Expectations experiences Guillain‐Barré syndrome patients patient‐reported experience measure recovery |
| title | Patient‐reported symptoms and experience following Guillain‐Barré syndrome and related conditions: Questionnaire development and validation |
| title_full | Patient‐reported symptoms and experience following Guillain‐Barré syndrome and related conditions: Questionnaire development and validation |
| title_fullStr | Patient‐reported symptoms and experience following Guillain‐Barré syndrome and related conditions: Questionnaire development and validation |
| title_full_unstemmed | Patient‐reported symptoms and experience following Guillain‐Barré syndrome and related conditions: Questionnaire development and validation |
| title_short | Patient‐reported symptoms and experience following Guillain‐Barré syndrome and related conditions: Questionnaire development and validation |
| title_sort | patient reported symptoms and experience following guillain barre syndrome and related conditions questionnaire development and validation |
| topic | experiences Guillain‐Barré syndrome patients patient‐reported experience measure recovery |
| url | https://doi.org/10.1111/hex.13367 |
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