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1.
Mult Scler Relat Disord ; 84: 105419, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38364767

RESUMO

BACKGROUND: Although neuromyelitis optica spectrum disorder (NMOSD) has high recurrence and disability rates, cases of relapses can be recognized, and timely intervention can be provided if the risk of relapse is properly perceived. However, there have been no studies to explore patients' perceptions of recurrence risk and coping strategies. This study aimed to explore the characteristics of relapse risk perception and coping strategies of patients with NMOSD. METHODS: We adopted the phenomenological method of qualitative research. Face-to-face, semi-structured in-depth interviews were conducted with 15 patients with NMOSD. The interview data were then analyzed using the Colaizzi seven-step analysis. RESULTS: The analysis revealed five major themes. The first theme was the 'perception of possibility of relapse', which included subjectively underestimating the likelihood of relapse and shifted from underestimation to overestimation; the second theme was 'relapse warning signs perception'; the third theme was 'perception of relapse triggers', which included understanding relapse triggers, potential misconceptions about relapse triggers, and no identifiable cause of recurrence; the fourth theme was 'perception of the relapse consequences', encompassing severe impairment of body structure and function, prominent psychological problems, limited family roles and social functions, and heavy financial burden; and the final theme was 'relapse risk coping strategies', which included actively yearning for and seeking information support, recurrence risk prevention/management, limitations of coping strategies. CONCLUSIONS: This study's findings revealed that newly diagnosed patients as well as those who relapsed subjectively underestimated the likelihood of relapse before they had experienced multiple (two or more) relapses. In contrast, patients who had experienced multiple relapses had transitioned from initial underestimation to subsequent overestimation. Additionally, patients' compliance with medication was identified as a relapse-risk behaviors that was very manageable. The occurrence of relapse is associated with significant and extensive adverse effects on patients. Consequently, patients are eager to communicate with their healthcare providers regarding treatment planning and relapse management.


Assuntos
Neuromielite Óptica , Humanos , Neuromielite Óptica/tratamento farmacológico , Capacidades de Enfrentamento , Recidiva , Pesquisa Qualitativa , Percepção , Estudos Retrospectivos , Aquaporina 4
2.
Mult Scler Relat Disord ; 60: 103711, 2022 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-35305429

RESUMO

BACKGROUND: Neuromyelitis optica spectrum disorder (NMOSD) is an autoimmune inflammatory demyelinating disease of the central nervous system, which mainly involves the optic nerve and spinal cord and has high recurrence and disability rates. Patients with this condition are prone to social isolation, which has not been widely assessed. The purpose of this study was to investigate the experience of social isolation in patients with NMOSD. METHODS: A qualitative descriptive approach was used to conduct in-depth, face-to-face, semi-structured interviews. Data were analyzed using thematic analysis. RESULTS: A total of 20 patients (19 females, 1 male) completed the interview. Patients ranged in age from 14 to 68 years, with disease duration from 1 month to 30 years and Expanded Disability Status Scale scores from 2.0 to 8.0; 60% of patients were unemployed. Four major themes were identified: (1) perception of social isolation, (2) reasons for isolation, (3) impacts of isolation, and (4) potential solutions. CONCLUSIONS: Social isolation affects patients of all ages with different levels of disability and duration of NMOSD. Isolation occurs as a result of multiple interactions between physiological, cognitive-psychological, and environmental factors. The effects of social isolation mainly involve physical, psychological, and family-society aspects. Comprehensive interventions to improve social isolation should be carried out based on these multidimensional influencing factors.


Assuntos
Neuromielite Óptica , Adolescente , Adulto , Idoso , China , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Nervo Óptico , Isolamento Social , Medula Espinal , Adulto Jovem
3.
World Neurosurg ; 101: 633-642, 2017 May.
Artigo em Inglês | MEDLINE | ID: mdl-28192270

RESUMO

BACKGROUND: Cement leakage is the most common complication of vertebroplasty and kyphoplasty. So far, the reported risk factors remain conflicting because of limited data and lack of uniform measurement and evaluation. Here, we performed a systematic review and meta-analysis of potential risk factors for cement leakage after vertebroplasty or kyphoplasty. METHODS: Relevant literature was retrieved using PubMed, EMBASE, Cochrane Controlled Trial Register, and MEDLINE with no language restriction, supplemented by a hand search of the reference lists of selected articles. A fixed-effects model was used if homogeneity existed among included studies; otherwise, a random-effects model was used. The results were presented with weighted mean difference for continuous outcomes and odds ratio (OR) for dichotomous outcomes with a 95% confidence interval (CI). RESULTS: Twenty-two studies consisting of 2872 patients with 4187 vertebrae were included in the meta-analysis. The incidences of cement leakage for percutaneous vertebroplasty and percutaneous balloon kyphoplasty were 54.7% and 18.4%, respectively. The significant risk factors for new vertebral compression fractures were intravertebral cleft (OR, 1.40; 95% CI, 1.09-1.78; P < 0.01), cortical disruption (OR, 5.56; 95% CI, 1.84-16.81; P < 0.01), cement viscosity (OR, 3.32; 95% CI, 1.36-8.07; P < 0.01) and injected cement volume (weighted mean difference, 0.59; 95% CI, 0.02-1.17; P < 0.05). Age, sex and fracture type, operation level, and surgical approach were not significant risk factors. CONCLUSIONS: The results of this meta-analysis suggest that patients with intravertebral cleft, cortical disruption, low cement viscosity, and high volume of injected cement may be at high risk for cement leakage after vertebroplasty or kyphoplasty. Rigorous patient selection and individual therapeutic strategy irrespective of age, sex and fracture type, operation level, and surgical approach may reduce the occurrence of cement leakage. Given the inherent limitation of the meta-analysis, more large sample-sized randomized controlled trials are needed to further validate the present findings.


Assuntos
Cimentos Ósseos , Extravasamento de Materiais Terapêuticos e Diagnósticos/diagnóstico , Cifoplastia/tendências , Vertebroplastia/tendências , Ensaios Clínicos como Assunto/métodos , Extravasamento de Materiais Terapêuticos e Diagnósticos/epidemiologia , Fraturas por Compressão/diagnóstico , Fraturas por Compressão/epidemiologia , Fraturas por Compressão/cirurgia , Humanos , Cifoplastia/efeitos adversos , Fatores de Risco , Resultado do Tratamento , Vertebroplastia/efeitos adversos
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