Restless legs syndrome: A qualitative analysis of psychosocial suffering and interdisciplinary attention

Varela, Maria José V; Coin-Carvalho, João Eduardo; Carvalho, Luciane Bizari Coin de; Varela, Maite; Potasz, Clarisse; Prado, Lucila Bizari Fernandes do; Prado, Gilmar Fernandes do

doi:10.1177/1359105312439730

Cited by 13 publications

(16 citation statements)

References 34 publications

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“…A systematic review of 11 randomised controlled trials (RCTs) concluded although some non-pharmacological interventions appear beneficial for RLS symptoms, evidence was unconvincing due to the few studies, lack of validation studies and high risk of bias in reported trials (Harrison et al, 2018a). Two qualitative studies have explored the lived experience of RLS (Abraham et al, 2010;Varela et al, 2013). Varela et al (2013) reported participants' illness 'description, history and experience' and effect on relationships.…”

Section: Introductionmentioning

confidence: 99%

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The experience of living with restless legs syndrome: A qualitative study

2019

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Restless legs syndrome is a sensorimotor disorder that significantly affects quality of life. This study explored the experience of people living with restless legs syndrome. Focus groups were analysed thematically resulting in five themes. Participants described disempowerment in managing symptoms, difficulty coping and poor understanding of the condition. Participants tried many therapies with little relief and were unable to monitor treatment effects. Concerns with healthcare services were common. Feeling understood provided validation and empowerment. Healthcare providers can help people with restless legs syndrome by improving restless legs syndrome awareness, providing psychosocial support and education, and assisting people to monitor treatment effects.

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Section: Introductionmentioning

confidence: 99%

“…Two qualitative studies have explored the lived experience of RLS (Abraham et al, 2010;Varela et al, 2013). Varela et al (2013) reported participants' illness 'description, history and experience' and effect on relationships. Participants also described a lack of recognition by healthcare professionals.…”

Section: Introductionmentioning

confidence: 99%

The experience of living with restless legs syndrome: A qualitative study

2019

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“…This study is an important step toward the creation of an instrument designed to differentiate patterns of movement associated with the benign habit of leg fidgeting from those of RLS/WED, a pathological condition with clinical consequences and impact on quality of life [9][10] .…”

Section: Discussionmentioning

confidence: 99%

“…These cartoons may be part of future population-based studies aimed at identifying and increasing awareness of a phenomenon that is often mistaken for RLS/WED. Patients with RLS are stigmatized because, from the point of view of the general population, a medical diagnosis of RLS represents only the habit of moving one's legs, which we have termed as leg fidgeting -something that is far from representing a problem 1,9 . Friends and family often do not understand why patients with RLS need to take medications, as they presume they also have "restless legs" and cope well with it.…”

Section: Discussionmentioning

confidence: 99%

Creating cartoons to represent habitual leg movements

Carlos

Camargo

Moinho

et al. 2020

Arq. Neuro-Psiquiatr.

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Many people have a habit of moving their legs and believe that this behavior is due to the restless legs syndrome (RLS), a highly prevalent neurological condition that greatly impairs the quality of life of affected individuals. This behavioral pattern, characterized by the habit of ABSTRACT Many people have a habit of moving their legs and believe that this behavior is due to the restless legs syndrome (RLS), a highly prevalent neurological condition that greatly impairs the quality of life of affected individuals. This behavioral pattern, characterized by the habit of moving one's legs and feet, may be an important confounding factor in the diagnosis of RLS. Objective: To describe the main movements associated with this benign behavioral state to characterize a possible clinical condition that can contribute to the differential diagnosis of RLS. Methods: Experienced sleep specialists, who primarily see RLS patients listed the most frequent movements people without RLS report while describing their suspected RLS. We first compiled a list of the lower-limb movements described by the specialists. Then, one of the authors (KC) carried out all movements of the list on camera to obtain a video footage. This footage was sent to one of the authors, EPC, who, alongside a group of students, drew graphic representations (cartoons) of the recorded movements. Results: The panel of sleep experts described 13 leg movements commonly reported by their patients. The experts reported 11 simple movements and two combined movements. Conclusion: In this study we developed an instrument that allows us to oppose and distinguish a pathological condition (RLS) from a behavioral phenomenon. This state of behavioral leg fidgeting needs to be better characterized and may eventually be recognized as a clinical entity per se. RESUMOMuitas pessoas têm o hábito de movimentar as pernas e acreditam que esse comportamento decorre da Síndrome das Pernas Inquietas (SPI), uma condição neurológica altamente prevalente com grande impacto na qualidade de vida dos indivíduos acometidos. Esse padrão de comportamento, caracterizado pelo costume de mover as pernas e os pés, pode ser um importante fator confundidor no diagnóstico da SPI. Objetivo: Descrever os principais movimentos associados a esse estado comportamental benigno, com a finalidade de caracterizar uma eventual condição clínica que possa contribuir para o diagnóstico diferencial da SPI. Métodos: Especialistas em distúrbios do sono, que atendem principalmente pacientes com SPI, listaram os movimentos que as pessoas sem SPI reportam com maior frequência enquanto descrevem a sua suspeita de síndrome. Elaboramos uma lista de movimentos dos membros inferiores descritos pelos especialistas e um dos autores (KC) realizou esses movimentos para que fossem gravados em vídeo. Essa filmagem foi enviada ao autor EPC, que, em conjunto com um grupo de alunos, realizou a representação gráfica (cartoon) dos movimentos gravados. Resultados: Os especialistas reportaram 13 movimentos de pernas, sendo 11 movimento...

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“…Em alguns casos o paciente deixa de ter uma vida social adequada, por exemplo, fica impossibilitado de fazer viagens longas, permanecer em cinema, teatro, ou demais condições que demandem repouso 1,19,20 .…”

Section: Introductionunclassified

Terapia Cognitivo Comportamental para Pacientes Portadores da Síndrome das Pernas Inquietas

Castro

Carlos

Carvalho

et al. 2013

RNC

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RESUMOIntrodução. A Síndrome das Pernas Inquietas (SPI) é uma doença crônica que se caracteriza por sensações de desconforto nos membros inferiores, que se iniciam no repouso, principalmente à noite e com necessidade urgente de movê-los para aliviar o sintoma. Este desconforto acarreta prejuízos familiares, sociais, pessoais, profissionais, levando à insônia e deteriorando a qualidade de vida de seus portadores. A Terapia Cognitivo-Comportamental (TCC) é uma prática de atendimento que utiliza técnicas para reorganizar hábitos e reavaliar crenças e atitudes e tem se mostrado eficaz no âmbito dos distúrbios de sono contribuindo para melhorar a qualidade do sono de pacientes. Método. Foi realizada uma revisão bibliográfica sobre SPI, qualidade de vida e tratamentos não farmacológicos para seus portadores. Resultados. Foi encontrado um artigo com desenho de ensaio clínico controlado que utilizou a TCC para tratamento de pacientes com SPI, através da técnica de mindfulness. Conclusão. A TCC é uma das formas de tratamento não medicamentoso para SPI, mas faltam estudos para verificar sua eficácia, ou mesmo sua indicação como opção de tratamento da SPI. O tratamento farmacológico permanece como primeira escolha de tratamento, e mudanças de comportamento e medidas de higiene do sono como terapias associadas ao tratamento convencional. Unitermos. Síndrome das Pernas ABSTRACTIntroduction. The Restless Legs Syndrome (RLS) is a chronic disease that is characterized by uncomfortable sensations in the lower limbs, which start at rest, especially at night and with an urgent need to move them to relieve symptoms. This discomfort impairs family, social, personal, professional relationships, and leading to insomnia and deteriorating quality of life of its sufferers. The cognitive-behavioral therapy (CBT) uses techniques to reorganize and reevaluate habits and beliefs, and have been proven effective in sleep disorders treatment, contributing to improve the quality of sleep of patients. Method. We performed a literature review on SPI, quality of life and non-pharmacological treatments. Results. We found one article with controlled clinical trial design that used CBT for the treatment of patients with RLS, and using the technique of mindfulness. Conclusion. CBT is a form of non-pharmacological treatment for RLS, but there are no studies to verify its effectiveness, or even his indication as an option for treatment of RLS. Pharmacological treatment remains the first choice of treatment, and changes in behavior and sleep hygiene measures as therapies associated with conventional treatment.

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Restless legs syndrome: A qualitative analysis of psychosocial suffering and interdisciplinary attention

Cited by 13 publications

References 34 publications

The experience of living with restless legs syndrome: A qualitative study

The experience of living with restless legs syndrome: A qualitative study

Creating cartoons to represent habitual leg movements

Terapia Cognitivo Comportamental para Pacientes Portadores da Síndrome das Pernas Inquietas

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