Patients’ experiences and perceptions of Guillain-Barré syndrome: A systematic review and meta-synthesis of qualitative research

Laparidou, Despina; Curtis, Ffion; Akanuwe, Joseph; Jackson, Jennifer; Hodgson, Timothy L.; Siriwardena, A Niroshan

doi:10.1371/journal.pone.0245826

Cited by 4 publications

(13 citation statements)

References 22 publications

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“…The questionnaire showed reliability as excellent for symptoms, good for information provided and factors affecting recovery and acceptable for care received and symptom subscales. Physical, psychological and social factors were associated with recovery, and concordance with recent studies 11,13 supports construct validity.…”

Section: Main Findingssupporting

confidence: 86%

“…10 A recent systematic review and metasynthesis of qualitative studies of people with GBS showed the complexity of experience of the illness, its care and rehabilitation from illness onset to hospitalisation with acute symptoms, recovery and adjustment in the case of longer-term problems. 11 This and other studies of patient-reported experiences of neurological conditions have identified common factors associated with care quality. 12 A further qualitative study exploring those factors associated with recovery demonstrated the importance of early diagnosis, positive experiences of inpatient care, active support for recovery and good communication and information provision.…”

Section: Introductionmentioning

confidence: 72%

“…26 Previous research has suggested a wide variation in positive and negative experiences at various stages of treatment and recovery from GBS. 11,13 We also found wide variations in experiences of care from different healthcare professionals during the illness journey, with the most positive experiences of care in hospital, from consultants, followed by nurses and therapists. Consultants, followed by physiotherapists were also rated highly for care at follow-up, and although in this study physical, psychological and social support were (nonsignificantly) associated with improvement in symptoms, experiences of care and psychosocial support remain important aspects of quality of care.…”

Section: Comparison With the Existing Literaturementioning

confidence: 78%

“…Questionnaire domains and items were based on a systematic review and metasynthesis of qualitative studies 11 and an interview study of people with the condition. 13 The domains for people who previously had GBS included participant characteristics; severity of symptoms (physical, psychological and social) at each stage of illness; medical health-seeking experience; treatment and care experiences; followup and support; and social or work-related experience.…”

Section: Questionnaire Developmentmentioning

confidence: 99%

“…shown to influence recovery. 11,13 In the first regression model, the main scales of the questionnaire (shown in Table 5) were included as predictors. In the second regression model, the main subscales of the questionnaire (shown in | 227…”

Section: Prediction Modelsmentioning

confidence: 99%

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Patient‐reported symptoms and experience following Guillain‐Barré syndrome and related conditions: Questionnaire development and validation

Siriwardena

Akanuwe

Botan

et al. 2021

Health Expectations

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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

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Section: Main Findingssupporting

confidence: 86%

Section: Introductionmentioning

confidence: 72%

Section: Comparison With the Existing Literaturementioning

confidence: 78%

Section: Questionnaire Developmentmentioning

confidence: 99%

Section: Prediction Modelsmentioning

confidence: 99%

See 3 more Smart Citations

Patient‐reported symptoms and experience following Guillain‐Barré syndrome and related conditions: Questionnaire development and validation

Siriwardena

Akanuwe

Botan

et al. 2021

Health Expectations

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Guidelines for Neuroprognostication in Adults with Guillain–Barré Syndrome

et al. 2023

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Background Guillain–Barré syndrome (GBS) often carries a favorable prognosis. Of adult patients with GBS, 10–30% require mechanical ventilation during the acute phase of the disease. After the acute phase, the focus shifts to restoration of motor strength, ambulation, and neurological function, with variable speed and degree of recovery. The objective of these guidelines is to provide recommendations on the reliability of select clinical predictors that serve as the basis of neuroprognostication and provide guidance to clinicians counseling adult patients with GBS and/or their surrogates. Methods A narrative systematic review was completed using Grading of Recommendations Assessment, Development and Evaluation (GRADE) methodology. Candidate predictors, including clinical variables and prediction models, were selected based on clinical relevance and presence of appropriate body of evidence. The Population/Intervention/Comparator/Outcome/Time frame/Setting (PICOTS) question was framed as follows: “When counseling patients or surrogates of critically ill patients with Guillain–Barré syndrome, should [predictor, with time of assessment if appropriate] be considered a reliable predictor of [outcome, with time frame of assessment]?” Additional full-text screening criteria were used to exclude small and lower quality studies. Following construction of an evidence profile and summary of findings, recommendations were based on four GRADE criteria: quality of evidence, balance of desirable and undesirable consequences, values and preferences, and resource use. In addition, good practice recommendations addressed essential principles of neuroprognostication that could not be framed in PICOTS format. Results Eight candidate clinical variables and six prediction models were selected. A total of 45 articles met our eligibility criteria to guide recommendations. We recommend bulbar weakness (the degree of motor weakness at disease nadir) and the Erasmus GBS Respiratory Insufficiency Score as moderately reliable for prediction of the need for mechanical ventilation. The Erasmus GBS Outcome Score (EGOS) and modified EGOS were identified as moderately reliable predictors of independent ambulation at 3 months and beyond. Good practice recommendations include consideration of both acute and recovery phases of the disease during prognostication, discussion of the possible need for mechanical ventilation and enteral nutrition during counseling, and consideration of the complete clinical condition as opposed to a single variable during prognostication. Conclusions These guidelines provide recommendations on the reliability of predictors of the need for mechanical ventilation, poor functional outcome, and independent ambulation following GBS in the context of counseling patients and/or surrogates and suggest broad principles of neuroprognostication. Few predictors were considered moderately reliable based on the available body of evidence, and higher quality data are needed.

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Cuidados de enfermagem ao paciente portador da Síndrome de Guillain-Barré: uma revisão sistemática da literatura

Pereira

Rocha²,

Monteiro³

et al. 2023

RSD

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Objetivo: Sintetizar através de uma revisão de pesquisas realizadas sobre os cuidados de enfermagem aos pacientes portadores da Síndrome de Guillain-Barré, juntamente com uma assistência sistematizada. Método: Realizou-se um estudo de revisão da literatura do tipo sistemática, que proporcionou a síntese do conhecimento e a abordagem dos cuidados de enfermagem com os portadores da síndrome de Guillain-Barré (SGB). Para a buscas das publicações utilizou as seguintes bases de dados: A biblioteca virtual de saúde (BVS), Literatura Latino-Americana e do Caribe em Ciências da Saúde (LILACS), Scientific Electronic Library Online (SCIELO), Google Acadêmico, PUBMED e MEDLINE, filtradas por meio dos seguintes descritores em ciências da saúde (DeCS): “Síndrome de Guillain-Barré”, “Cuidados de enfermagem”, “Tratamento” e ‘Reabilitação”. Os critérios de inclusão utilizados foram: publicações que se corresponderam a temática proposta, associados aos idiomas português e inglês, delimitados entre os anos de 2007 a 2022. Já os critérios de exclusão usados: foram excluir estudos duplicados, que fugiram da temática proposta, resenhas, resumos, trabalhos de conclusão de curso, dissertações, teses e anais. Resultados: Encontrou-se 9 publicações que se adequaram aos critérios de elegibilidade, e foram utilizadas para o processo de discussão baseadas e desenvolvidas através dos principais cuidados de enfermagem ao portador da SGB, utilizando a sistematização da assistência de enfermagem (SAE). Conclusão: Esta pesquisa tratou-se de buscar responder à importância dos cuidados de enfermagem prestados ao paciente com SGB feitos de forma sistematizadas. A SAE propõe uma ótima comunicação entre a equipe multidisciplinar de saúde o que facilita a recuperação do paciente do SGB.

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Patients’ experiences and perceptions of Guillain-Barré syndrome: A systematic review and meta-synthesis of qualitative research

Cited by 4 publications

References 22 publications

Patient‐reported symptoms and experience following Guillain‐Barré syndrome and related conditions: Questionnaire development and validation

Patient‐reported symptoms and experience following Guillain‐Barré syndrome and related conditions: Questionnaire development and validation

Guidelines for Neuroprognostication in Adults with Guillain–Barré Syndrome

Cuidados de enfermagem ao paciente portador da Síndrome de Guillain-Barré: uma revisão sistemática da literatura

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