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- Instruments to assess gait in individuals with multiple sclerosis: a systematic reviewPublication . Jesus, Maria Margarida de; Pedro, LuisaBackground: Gait impairment is considered a significant cause of disability and is a clinical feature of Multiple Sclerosis. For this reason, their regular assessment is essential for better management and treatment and to evaluate the effectiveness of rehabilitation. Objective: This study aims to know what instruments are available in the literature to assess gait in patients diagnosed with MS. Data Sources and Searches: A complete literature search was conducted in MEDLINE, Web of Science, Embase, and Scopus, following Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA). The study protocol was registered at the International Prospective Register of Systematic Reviews (PROSPERO). Study Selection: The authors selected studies written in English and representing validation of gait assessment tools exclusively for adults with a diagnosis of MS. Data Extraction and Quality Assessment: Two authors independently extracted the data for reliability, measurement error, validity, and assessed methodological quality using the COnsensus-based standards to select health Measurement Instruments (COSMIN). Data Synthesis and Analysis: All authors performed data synthesis to determine the level of evidence per measurement property per tool.
- How can a self-regulation program be implicated in the management of disease severity and well-being in MS patients?Publication . Pedro, Luisa; Pais-Ribeiro, José Luís; Pinheiro, João PáscoaMultiple sclerosis is a chronic disease of the central nervous system that mainly affects young adults, promoting a great impact on functionality. Multiple sclerosis leads to strong functional restrictions, particularly in the context of daily living activities, as well as in patient participation. The aim of this study is to understand the implications of a self-regulation program in the perception of disease severity and well-being and in multiple sclerosis patients.
- Características psicométricas dos instrumentos usados para avaliar a qualidade de vida na esclerose múltipla: uma revisão bibliográficaPublication . Pedro, Luisa; Pais-Ribeiro, José LuísA esclerose múltipla (EM) é a doença crónica neurológica que mais afeta adultos jovens; em 80% dos casos, a doença progride para situações de níveis variados de incapacidade, o que torna necessário avaliar a qualidade de vida (QV) desses indivíduos. O objetivo desta revisão foi localizar estudos que avaliam a QV em indivíduos com EM, identificando os instrumentos utilizados e suas características psicométricas. Foram consultadas as bases Psycinfo, Psycarticles, Psycbooks, Psychology & Behavioral Science Collection, EJS E-Journal, Cochrane Central Register of Controlled Trials, Cochrane Database of Systematic Reviews, Database of Abstracts of Reviews of Effects, Medline, e Academic Search Complete, utilizando os descritores 'multiple sclerosis' e 'quality of life', para localizar artigos publicados no período 1997-2007. Foram selecionados 1.376 artigos e, após a leitura dos resumos, excluídos os referentes a instrumentos que não tinham boas características psicométricas e/ou eram pouco referenciados. Foram encontrados 461 artigos, dos quais 267 usaram instrumentos genéricos e 194 específicos para a EM. Dos 7 instrumentos (2 genéricos, 5 específicos) com boas características psicométricas utilizados pelos estudos consultados, o mais usado é o SF-36 (em 237 estudos). Todos os instrumentos têm validade verificada e apresentam grau elevado de confiabilidade, podendo ser utilizados para avaliação da qualidade de vida de pacientes com EM tanto em pesquisa quanto na clínica. ABSTRACT - Multiple sclerosis (MS) is the chronic neurological disease that most affects young adults; 80% of patients experience a transition towards persistent disability, hence the need to assess their quality of life (QoL). The aim of the study was to review studies that assess QoL in patients with multiple sclerosis, inquiring on the instruments used and their psychometric features. Articles published from 1997 through 2007 were searched for by means of key words 'multiple sclerosis' and 'quality of life' in databases Psycinfo, Psycarticles, Psycbooks, Psychology & Behavioral Science Collection, EJS E-Journal, Cochrane Central Register of Controlled Trials, Cochrane Database of Systematic Reviews, Database of Abstracts of Reviews of Effects, Medline, and Academic Search Complete. From the 1,376 studies found, after abstract reading those that reported on instruments with poor psychometric properties and/or were little referred were excluded. A total of 461 articles were selected, of which 267 reported using generic instruments and 194, MS-specific ones. Among the 7 instruments reported by the studies as having good psychometric characteristics (2 generic, five MS-specific), the most used is the SF-36 (by 237 studies). All instruments have shown adequate psychometric properties and a high degree of reliability, hence may be used to assess QoL in subjects with multiple sclerosis both in clinic and research.
- The importance of hope for quality of life in patients with multiple sclerosisPublication . Pais-Ribeiro, J. L.; Pedro, LuisaAims: This study intends to describe the importance of hope for the quality of life in patients with multiple sclerosis. Evidence has indicated that Hope is important as a buffer between risk factors, physical and psychological health status, and quality of life for patients with multiple sclerosis. Methods: The study was exploratory and descriptive. Setting: A general Hospital in Lisbon, Portugal. Participants: 280 patients with Multiple Sclerosis. We explore the relationship between Hope and Quality of Life. The instruments used are the Multiple Sclerosis Quality of Life scale (MSQol-54) and the Hope Scale. Results: The correlation between the Hope Scale and the domains of MSQOL-54: Physical Health (r=0.24, p<0.05), Physical Role Limitations (r=0.25, p<0.05), Emotional Role Limitations (r=0.35, p<0.05), Pain (r=0.28, p<0.05),Well-being (r=0.48, p<0.01), Energy (r=0.42, p<0.01), Health in General (r=0.41, p<0.01), Social Function (r=0.45, p<0.01), Cognitive Function (r=0.28, p<0.05), Health Distress (r=0.52, p<0.01), Overal Qol (r=0.49, p<0.01), Sexual function (r=0.33, p<0.05), Change in Health (r=-0.17, p<0.05), and Satisfaction with sexual function (r=0.33, p<0.05). Conclusions: There is a statistically significant correlation between the variables, suggesting that hope can play an important role in the quality of life of patients with multiple sclerosis, especially in domains such as the perception of well-being, health in general, and social function, and distress.
- Programa de intervenção segundo o modelo de auto-regulação na esclerose múltiplaPublication . Pedro, Luisa; Pais-Ribeiro, José Luís; Pinheiro, João PáscoaA esclerose múltipla é um doença crónica do sistema nervoso central, que afecta mais frequentemente adultos jovens, no auge da sua carreira profissional e desenvolvimento pessoal, sem cura e de causas desconhecidas. Os sintomas e sinais mais comuns são a fadiga, fraqueza muscular, alterações da sensibilidade, ataxia, alterações do equilíbrio, dificuldades na marcha, dificuldades de memória, alterações cognitivas e dificuldades na resolução de problemas. A esclerose múltipla é uma doença progressiva e imprevisível, resultando, nalguns casos, em incapacidades e limitações de actividade de vida diária, causando danos irreparáveis para os indivíduos. Esta doença pode surgir através de surtos ou de uma forma progressiva.
- Análise psicométrica da escala de impacto na autonomia e participação, em pessoas com esclerose múltiplaPublication . Pedro, Luisa; Pais-Ribeiro, José LuísA avaliação da Autonomia e funcionalidade das pessoas com esclerose múltipla é fundamental para a compreensão das limitações e necessidades destas pessoas. O presente estudo tem como objectivo estudar as propriedades psicométricas da Escala de Impacto Autonomia e Participação em doentes com esclerose múltipla. Participaram neste estudo 280 indivíduos com diagnóstico de esclerose múltipla, 71,4% mulheres com idade média de 39,23 anos. Procedeu-se à análise factorial exploratória, consistência interna, teste-reteste, validade convergente e discriminante. Os resultados demonstram valores psicométricos apropriados para a versão de língua portuguesa semelhantes às versões de língua alemã e de língua inglesa. Concluímos que esta escala tem boas condições psicométricas para avaliar a autonomia funcional em indivíduos com esclerose múltipla. ABSTRACT: Assessment of Autonomy and participation of patients with multiple sclerosis is essential to understand the limitations and necessities of these patients. The present study aims to examine the psychometric proprieties of the Impact on Participation and Autonomy Questionnaire (IPA) in patient with multiple sclerosis. Participants are 280 patients with a diagnostic of multiple sclerosis, 71.4% females, mean age of 39.23 years. We inspect metric properties namely, validity, construt validity and convergent and discriminant validity, and reliability, internal consistency and test-retest. The results show that IPA is a reliable and valid instrument for assessment autonomy and participation in Portuguese language, with similar sensibility than the Germany and English version. In conclusion these instruments have psychometric conditions for assessment the functional autonomy of people with multiple sclerosis.
- Well-being and disease severity of multiple sclerosis patients following a physical activity programPublication . Pedro, Luisa; Pais-Ribeiro, José Luís; Páscoa Pinheiro, JoãoABSTRACT - Introduction: Multiple sclerosis (MS) is a chronic disease of the central nervous system that mainly affects young adults, promoting a great impact on functionality. Fatigue is a very common symptom, associated with multiple impairments in sensitivity, muscle activity, neuromotor control, balance, cognition, and problem-solving ability. MS leads to strong functional restrictions, particularly in the context of daily living activities, as well as in patient participation. Objective: To understand the implications of a self-regulation program in the perception of well-being and mental health in MS patients. Methods: A set of exercises was implemented for use in daily activities, supported by different studies with MS patients. Patients were asked to classify the severity of their disease and to use the Mental Health Inventory (MHI-38), at the beginning (time A) and at the end (time B) of the self-regulation program. We used the Statistical Package for the Social Sciences (SPSS) version 25. A non-parametric statistical hypothesis test (Wilcoxon test) was used to analyze the variables. Results: The mean age was 44 years old, with patients between the ages of 20 and 58. 58.3% were women, 37.5% were currently married, 67% were retired and the mean level of education was 12.5 years. The correlation between the perception of disease severity and psychological well-being before the self-regulation program (r = 0.26, p < 0.05) and after the intervention (r = 0.37, p < 0.01) suggests a low to moderate correlation. Conclusion: The implementation of the self-regulatory model, through the promotion of physical activity in patients with MS, had a positive impact on clinical rehabilitation, well-being, and perception of disease severity of these people.
- Relação entre otimismo e autonomia funcional em indivíduos com esclerose múltiplaPublication . Pedro, Luisa; Pais-Ribeiro, José LuísObjetivo: O presente estudo tem como objetivo verificar a relação existente entre autonomia funcional e otimismo. Método: Os participantes são 280 indivíduos portadores de esclerose múltipla (EM) diagnosticada há mais de um ano em que a maioria são mulheres, com nível elevado de escolaridade, maioritariamente casados, e a trabalhar em regime de tempo integral. A funcionalidade foi avaliada com a Escala de Impacto de Participação e Autonomia – IPA, e o otimismo com o Life Orientation Test – Revised (LOT-R). A recolha de dados realizou-se em unidades de saúde de Lisboa e cumpriu as regras conforme a Declaração de Helsínquia. Conclusão: Os resultados mostram que existem valores de correlação estatisticamente significativos, mas moderados entre as dimensões da LOT-R e IPA, sugerindo que o otimismo é um fator importante para a autonomia funcional dos indivíduos portadores de EM. ABSTRACT - Aim: The present study aims at identifying the relationship between optimism and functional autonomy in individuals with Multiple Sclerosis (MS). Method: The participants are 280 individuals diagnosed with MS for more than one year; the majority are women, with high levels of education, mostly married and employed on full time. To access functionality we used the Impact on Participation and Autonomy Scale – IPA, and to assess optimism the Life Orientation Test - Revised (LOT-R). Data was collected in Lisbon health settings. Data collection follows the rules of the Helsinki Declaration. Conclusion: Results show that correlations between the two main variables are statistically significant, but moderate, suggesting that the perception of optimism is an important factor for functional autonomy in individuals with MS.
- Implication of an intervention program for the promotion of physical activity in relation of quality of life and well-being in people with multiple sclerosisPublication . Pedro, Luisa; Pais-Ribeiro, José Luís; Pinheiro, João PáscoaAims: The promotion of physical activity can be an important factor in the quality of life and well being of the patients with Multiple Sclerosis (MS). The aim of this study is to examine the impact on the relationship between quality of life (QOL) and psychological well-being (PWB) of an implementation of a program of physical activity, with patients with MS. Methods: It is a correlational study. The study includes 27 patients with MS, mean age 44 years, 58.3 % women, 37.5 % currently married, 67 % retired, mean school level of 12.5 years, EDSS score under 7. Intervention preparation followed the recommendations of Helsinki Declaration. We use the Multiple Sclerosis Quality of Life scale (MSQol-54) and the subscale psychological well-being (PWB) belonging to the Mental Health Inventory The program consists of an intervention to promote physical activity (IPPA) in a group of eight people, in once a week sessions of 90 min. The program was held for 7 weeks. We analyze the results through the Spearman correlation tests between the dimensions of MSQOL-54 and Well-being.
- The effect of urinary incontinence and sexual dysfunction on the quality of life among people with multiple sclerosisPublication . Loureiro, A. P.; Carvalho, F. A.; Godoy, L. S.; Antunes, T. C.; Pais-Ribeiro, José Luís; Pedro, LuisaIntroduction/Background - Urinary incontinence and sexual dysfunction are frequent clinical manifestations in Multiple Sclerosis (MS) sufferers, of great social impact, but their impacts on the quality of life of these people are not always recognized and evaluated. This study aims to investigate if there are any differences between Brazilian and Portuguese MS populations for the scores obtained in the Multiple Sclerosis Quality of Life – MSQOL-54 questionnaire for the sexual function and social function questions. Material and Methods - 58 individuals with MS (average age of 38.57±12.02; average diagnosis time of 6.28 years) living in Curitiba, Brazil; and 280 individuals with MS (average age of 39.23±(11.21; average diagnosis time of 7.21 years) living in Lisbon, Portugal, took part in this study. Women predominated in both the groups living in Curitiba (72.4%) and in Lisbon (71.4%). Results - The values obtained for sphincter incontinence X social function, described by their medians (1Q-3Q) were 100.0 (75.0 – 100.0) for the Brazilian population and 75.0 (50.0 – 100.0) for the Portuguese population; showing a 25% higher score amongst the Brazilians (p = 0.046 – Mann Whitney). There was no difference for the sexual function score (p = 0.156 – Mann Whitney) with values of 66.7 (45.0 – 80.0) for the Brazilians and 66.7 (33.3 – 80.0) for the Portuguese. Conclusion - It was observed that sexual function interfered with the quality of life of the two populations studied in a similar way, and that the influence of problems caused by sphincter disorders on social life were of a lower level for the participants from Lisbon. Thus it is suggested that intervention programs focused on sexual and sphincter adjustments are necessary for both populations.