The impact of epilepsy from the patient’s perspective II: views about therapy and health care

Fisher, Robert S.; Vickrey, Barbara G.; Gibson, Patricia; Hermann, Bruce P.; Penovich, Patricia; Scherer, Ann; Walker, Steven

doi:10.1016/s0920-1211(00)00128-5

Cited by 172 publications

(90 citation statements)

References 18 publications

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“…In the clinical setting, physicians caring for patients with epilepsy monitor seizure frequency and adverse effects of medications, but they may not specifically or systematically assess HRQOL. Therefore several measures were developed to complement the traditional outcome evaluations and to assess other dimensions of HRQOL (1-3), which include the ability to drive, freedom from bothersome medication side effects, participation in social activities, independence, successful employment, seizure unpredictability, or social embarrassment (4,5). In patients with epilepsy, HRQOL measures improve with attaining seizure freedom, independent of the treatment type used to achieve the seizure freedom (6)(7)(8)(9)(10)(11)(12).…”

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confidence: 99%

Quality of Life in Psychogenic Nonepileptic Seizures

Szaflarski¹,

Hughes²,

et al. 2003

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Summary:Purpose: Psychogenic nonepileptic seizures (PNESs) are events that alter or seem to alter the neurologic function and, in their appearance, resemble epileptic seizures (ESs). In patients with ESs the psychological and medical aspects of epilepsy greatly influence the health-related quality of life (HRQOL). The relation between these factors and PNESs is not well established. In this study, we compared HRQOL in patients with PNESs with that of patients with ESs.Methods: We evaluated 105 patients admitted to the Epilepsy Monitoring Unit of University Hospital between January 20, 2001, and January 20, 2002. Only patients with the definite diagnosis of ESs or PNESs were analyzed (n ‫ס‬ 85). Patients completed an epilepsy-specific quality-of-life instrument (QOLIE-89), the Profile of Mood States (POMS), and Adverse Events Profile (AEP). We used t tests and regression analyses to contrast HRQOL in PNESs and ESs and to elucidate the main factors associated with HRQOL in patients with PNESs.Results: In our sample, 45 patients had PNESs, and 40 hadESs. The overall HRQOL and scores on 13 of 19 QOLIE-89 subscales were significantly lower (i.e., worse) in PNES than in ES patients. AEP and scores on five of six POMS subscales also were worse in PNES patients than in ES patients. PNES versus ES diagnosis, POMS depression/dejection, and AEP were significant predictors of HRQOL, jointly explaining 65% variation in HRQOL. The lower HRQOL in PNESs versus ESs was in part explained by depression and AEP.Conclusions: Patients with PNESs have a lower HRQOL and worse mood problems than do patients with ESs. This disadvantage is primarily due to depression and medication side effects, although these factors influence QOL in much the same way in PNES and ES patients. These baseline HRQOL data on patients with PNESs can be used to evaluate the effects of treatment in this patient population.

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confidence: 99%

Quality of Life in Psychogenic Nonepileptic Seizures

Szaflarski¹,

Hughes²,

et al. 2003

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“…The uncertainty of having a seizure in public without warning can increase the likelihood of withdrawal. This is supported by research findings where fear of having a seizure and the uncertainty associated with epilepsy (such as if seizures will ever be controlled) were primary concerns of individuals living with the condition [7]. This uncertainty can increase vulnerability in social situations and greatly impact on quality of life [1,34].…”

Section: Stigma and Misconceptionmentioning

confidence: 88%

“…Psychosocial factors include comorbid anxiety and depression, cognitive deficits, the impact of stigma, low self-esteem, reduced opportunities for social interaction, difficulties in both intimate and non-intimate relationships and employability [1][2][3][4][5][6][7][8][9][10][11][12][13][14][15]. The impact of these factors on the quality of life of people with epilepsy in relation to epilepsy related variables will be discussed throughout the chapter.…”

Section: Epilepsy and Psychosocial Functioningmentioning

confidence: 99%

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Quality of Life Issues in Epilepsy

McCagh¹

2014

Epilepsy Topics

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“…Os PCE estão satisfeitos com atendimento como demonstrado na Tabela 1. 1,3,4,14,15,18,19,24,32,41 Essa afirmação torna-se discutível quando confrontadas às avaliações negativas a certas perguntas específicas desenvolvidas nos mesmos estudos. Existe uma grande insatisfação dos PCE com as informações recebidas pelos médicos, na maioria dos estudos os pacientes desejavam explicações sobre a causa da doença, fatores desencadeantes, tratamento, licença para dirigir e trabalho.…”

Section: Discussionunclassified

Pacientes com epilepsia: satisfação com os serviços de atenção à saúde?

Müller

Gomes

2008

J. epilepsy clin. neurophysiol.

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RESUMOIntrodução: A avaliação da qualidade dos serviços de saúde sob a ótica dos pacientes com epilepsia (PCE) pode ser uma ferramenta importante para organização e promoção do sistema de saúde. Objetivos: Avaliar e apresentar alguns aspectos sobre a satisfação do PCE com os serviços de saúde: satisfação geral, grau de informação sobre epilepsia e sua comunicação oferecida pelos profissionais de saúde, preferências pelo atendimento no setor primário ou pelo hospitalar, acessibilidade às consultas, eficácia do tratamento (freqüência das crises epilépticas) e medidas de melhoria do serviço com enfoque no uso de enfermeiras especializadas em epilepsia. Métodos: Foi realizada uma revisão sistemática baseada em artigos selecionados segundo os objetivos e captados nos bancos bibliográficos Pubmed e Science Direct. Resultados: Na maioria dos estudos, foram encontradas avaliações no geral positivas ao atendimento. No entanto, em quase todos existem críticas específicas, como a falta de comunicação, atendimento não compartilhado pelo setor primário e especializado, acessibilidade deficiente às consultas e a falta de continuidade do tratamento. Conclusão: Na tentativa de prover uma melhoria do atendimento aos PCE é fundamental conhecer as suas perspectivas, percepções, preferência e necessidades.Unitermos: Epilepsia, paciente, satisfação, perspectiva, visões, necessidades, avaliação dos serviços de atenção à saúde. ABSTRACTPatient with epilepsy: Satisfaction with the health care system? Introduction: The evaluation of the quality of the health care under the patients with epilepsy (PWE) view can be an important tool for the organization and promotion of the health care system. Objective: To evaluate and to present some aspects of the of the PWE satisfaction regarding the health care system services: general satisfaction, degree of information about epilepsy and its communication offered by the health care workers, preferences for the service in the primary health care or for the hospital care, accessibility to the consultations, effectiveness of the treatment (frequency of the epileptic seizures) and measures of improvement of the service with focus in the specialized nurses' work in epilepsy. Methods: A systematic review was carried out based on papers searched according to the objectives and obtained in the bibliographical banks Pubmed and Science Direct. Results: In most of the studies, they were found evaluations in the general positive to the services. However, in almost all specific criticisms exist, as the communication lack, services not shared by the primary and specialized health care, insufficient accessibility to the consultations, and the lack of continuity of the treatment. Conclusion: In the attempt of providing an improvement of the service to PWE is fundamental to know their perspectives, perceptions, preference and needs.

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The impact of epilepsy from the patient’s perspective II: views about therapy and health care

Cited by 172 publications

References 18 publications

Quality of Life in Psychogenic Nonepileptic Seizures

Quality of Life in Psychogenic Nonepileptic Seizures

Quality of Life Issues in Epilepsy

Pacientes com epilepsia: satisfação com os serviços de atenção à saúde?

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