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1.
BMC Neurol ; 23(1): 196, 2023 May 19.
Artigo em Inglês | MEDLINE | ID: mdl-37208623

RESUMO

BACKGROUND: Patients with myasthenia gravis(MG)often experience multiple symptoms concurrently, which can have an adverse effect on their quality of life(QOL). However, a specific, systemic and reliable scale for symptom clusters in MG is lacking. AIMS: To develop reliable assessment scale for symptom clusters in patients with MG. DESIGN: A cross-sectional descriptive study. METHODS: Based on the unpleasant symptom theory(TOUS), the first draft of the scale was developed through review literature, qualitative interview, and Delphi expert correspondence, the items of the scale were presented and adjusted through cognitive interviews with 12 patients. To conveniently assess the validity and reliability of the scale, a cross-sectional survey was conducted in 283 patients with MG who were recruited from Tongji Hospital of Tongji Medical College, Huazhong University of Science and Technology, from June to September 2021. RESULTS: The final symptom cluster scale for patients with MG consisted of 19 items(MGSC-19), with a content validity index ranging from 0.828 to 1.000 for each item and the content validity index was 0.980. Four common variables (ocular muscle weakness, general muscular weakness, treatment-related side effects, and psychiatric problems) were identified by exploratory factor analysis, which explained 70.187% of the total variance. The correlation coefficients between the scale dimension and the overall score ranged from 0.395 to 0.769 (all P < 0.01), while the correlation coefficients between dimensions varied from 0.324 to 0.510 (all P < 0.01). The Cronbach's alpha, retest reliability, and half reliability were 0.932, 0.845, and 0.837, respectively. CONCLUSION: The validity and reliability of MGSC-19 were generally good. This scale can be employed to identify the symptom clusters to help healthcare givers develop individualized symptom management measures for patients with MG.


Assuntos
Miastenia Gravis , Qualidade de Vida , Humanos , Síndrome , Psicometria , Estudos Transversais , Reprodutibilidade dos Testes , Inquéritos e Questionários , Miastenia Gravis/diagnóstico , Miastenia Gravis/psicologia
2.
Eur J Pediatr Surg ; 25(5): 435-40, 2015 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-25111276

RESUMO

OBJECTIVE: The present study was designed to evaluate the effectiveness of a nursing intervention program for outpatient rehabilitation of children with Hirschsprung-associated enterocolitis (HAEC) after radical colectomy for Hirschsprung disease (HD). BACKGROUND: Postoperative outcomes severely affect the quality of life in pediatric HD patients after operation. The improvement in defecation function is regarded as one of the most useful parameters to evaluate the quality of life in HD patients after radical intestinal resection. A close attention should also be paid to the patients' ability of social adaptation. METHODS: This prospective, randomized control trial enrolled 85 pediatric patients with HAEC after colectomy. They were randomly divided into the control and intervention groups. All the patients were followed up for 6 to 12 months after initial HAEC treatment. RESULTS: The intervention group had a lower enterocolitis recurrence rate than the control group, with a better ability to control defecation and their parents had better rehabilitation nursing knowledge (p < 0.05). The degree of parents' satisfaction regarding the outcome was significantly better in the intervention group than that in the control group (p < 0.05). CONCLUSION: A systemic rehabilitation nursing program could decrease enterocolitis recurrence, improve the recovery of anorectal functions, and enhance the quality of life in the pediatric patients after radical colectomy.


Assuntos
Assistência Ambulatorial , Colectomia/reabilitação , Doença de Hirschsprung/enfermagem , Doença de Hirschsprung/cirurgia , Cuidadores , Pré-Escolar , Aconselhamento , Defecação , Dieta , Enema , Enterocolite/etiologia , Enterocolite/prevenção & controle , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Doença de Hirschsprung/complicações , Humanos , Masculino , Pais , Satisfação do Paciente , Estudos Prospectivos , Recidiva , Autocuidado , Inquéritos e Questionários , Irrigação Terapêutica
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