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1.
Neurosurg Focus ; 57(2): E15, 2024 08 01.
Artigo em Inglês | MEDLINE | ID: mdl-39088866

RESUMO

OBJECTIVE: Transitional care in pediatric neurosurgery is challenging for patients and their parents. The specific needs of neurologically affected patients and the unique characteristics of the pathologies affecting pediatric neurosurgical patients compared with adults make a comprehensive, well-organized transition process essential for patient well-being and ensuring continuity of care. Little is known about patients' preferences and opinions on this topic. This study aimed to assess the patients' and parents' expectations and perceptions of the transition process. METHODS: The authors retrospectively identified patients aged 16 to 30 years who underwent surgery in their pediatric neurosurgical department. The patients were divided into two groups: those about to transition and those who had already transitioned. Transition models were identified within the latter group. Parents of eligible patients were contacted for a telephone survey, and the patients themselves were included when possible. A modified version of the established Got Transition questionnaire from the National Alliance to Advance Adolescent Health was used. RESULTS: Thirty-four patients were included, and 44 telephone surveys were conducted with the patients and their parents. Three transition models were applied, with 7 patients (41.2%) transitioned using the continued caregiver model, 9 patients (52.9%) using the shared caregiver model, and 1 patient (5.9%) using the specialized clinic model. Patient and parent satisfaction was highest among the patients transitioned using the continued caregiver and specialized clinic models. CONCLUSIONS: Neurosurgical conditions in children differ significantly from those in adults, creating unique transitional care challenges. The continuing caregiver model has been shown to provide continuity of care and high patient and parent satisfaction. However, there are differences in the perspectives of parents and patients regarding transitional care, with parents typically expressing greater concern and need for detailed information. Implementing a well-structured and individualized transition process is essential to reduce the caregiving burden on families and healthcare institutions.


Assuntos
Pais , Cuidado Transicional , Humanos , Adolescente , Feminino , Masculino , Adulto , Pais/psicologia , Adulto Jovem , Estudos Retrospectivos , Inquéritos e Questionários , Satisfação do Paciente , Procedimentos Neurocirúrgicos/métodos , Neurocirurgia , Pediatria
2.
Neurosurg Focus ; 56(6): E6, 2024 06.
Artigo em Inglês | MEDLINE | ID: mdl-38823044

RESUMO

OBJECTIVE: Single-level selective dorsal rhizotomy (SDR), typically indicated for ambulatory patients, is a controversial topic for severe spastic cerebral palsy (CP) with Gross Motor Function Classification System (GMFCS) level IV or V. The objective of this case series and systematic literature review was to outline the indication and outcome of palliative SDR for nonambulatory patients with CP and GMFCS level IV and V, focusing on improvement of spasticity and of patient and caregiver reported quality of life assessment. METHODS: A retrospective case series of patients with CP and GMFCS level IV or V who underwent single-level SDR at the authors' institution is presented. Furthermore, two databases (PubMed and Embase) were searched and a systematic review with a search string based on the terms "selective dorsal rhizotomy," "cerebral palsy," and "outcome" was conducted. The primary outcome was the reduction of spasticity based on the modified Ashworth scale (MAS). Secondary outcomes were change on the Gross Motor Function Measure-66 (GMFM-66), evaluation of patient-reported outcome measures (PROMs), surgical morbidity, and mortality. RESULTS: Eleven consecutive children under the age of 25 years undergoing palliative single-level SDR were included. All patients showed a reduction in MAS score (mean 1.09 ± 0.66 points) and no surgical morbidity and mortality occurred. For the systematic review results from our case series, in addition to 4 reports, 274 total patients were included. Reduction of spasticity based on MAS score was noted in all studies (mean range 1.09-3.2 points). Furthermore, in 2 studies spasticity of the upper extremities showed a MAS score reduction as well (range 1.7-2.8 points). The GMFM-66 score improved in 72% of the patients, while bladder function improved in 78% of the patients. Based on the PROMs, 92% of the patients/caregivers were satisfied with the outcome and their quality of life after the procedure. Two wound infections (2.7%) and one CSF leak (1.3%) occurred, while no surgery-related deaths were described. CONCLUSIONS: This analysis showed an improvement in spasticity, daily care, and comfort for patients with CP and GMFCS levels IV and V. Larger cohorts analyzing the outcome of palliative single-level SDR, based on the MAS, GMFM-66, and PROMs, are still needed and should be the focus of future studies. Systematic review registration no.: CRD42024495762 (https://www.crd.york.ac.uk/prospero/).


Assuntos
Paralisia Cerebral , Espasticidade Muscular , Cuidados Paliativos , Rizotomia , Humanos , Paralisia Cerebral/cirurgia , Paralisia Cerebral/complicações , Rizotomia/métodos , Criança , Masculino , Feminino , Pré-Escolar , Estudos Retrospectivos , Adolescente , Espasticidade Muscular/cirurgia , Espasticidade Muscular/etiologia , Cuidados Paliativos/métodos , Qualidade de Vida , Resultado do Tratamento
3.
BMJ Case Rep ; 13(11)2020 Nov 30.
Artigo em Inglês | MEDLINE | ID: mdl-33257397

RESUMO

Anorexia nervosa (AN) severely impacts individual's mental and physical health as well as quality of life. In 21% of cases no durable response to conservative treatment can be obtained. The serious course of the disease in the most severely affected patients justifies invasive treatment options. One of the treatment methods increasingly used in recent years is deep brain stimulation (DBS). A 42-year-old woman suffering from chronic AN of the bulimic subtype shows a 46.9% weight gain and a subjective increase in quality of life, 12 months after bilateral nucleus accumbens (NAcc) DBS implantation. No improvement in comorbid depression could be achieved. DBS of the NAcc is a treatment option to be considered in severe AN when conventional treatment modalities recommended by evidence-based guidelines have not been able to bring lasting relief to the patient's suffering.


Assuntos
Anorexia Nervosa/terapia , Bulimia Nervosa/terapia , Estimulação Encefálica Profunda , Aumento de Peso , Adulto , Anorexia Nervosa/fisiopatologia , Anorexia Nervosa/psicologia , Bulimia Nervosa/psicologia , Eletrodos Implantados/efeitos adversos , Feminino , Humanos , Qualidade de Vida
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