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1.
World Neurosurg ; 146: 270-273, 2021 02.
Artículo en Inglés | MEDLINE | ID: mdl-33212276

RESUMEN

BACKGROUND: Spinal schwannomas are commonly presented with minor symptoms, including radicular pain, sensory deficits, and minor neurologic deficit. Acute neurologic deterioration is uncommon. CASE DESCRIPTION: In this study, a case of cauda equina schwannoma presented with acute neurologic deficit after movement of spinal schwannoma is presented. CONCLUSIONS: It is noted that movement of spinal schwannoma and resultant acute neurologic deterioration should be considered during the follow-up.


Asunto(s)
Cauda Equina/patología , Neurilemoma/psicología , Neoplasias del Sistema Nervioso Periférico/psicología , Neoplasias de la Médula Espinal/psicología , Anciano , Cauda Equina/diagnóstico por imagen , Humanos , Masculino , Neurilemoma/diagnóstico por imagen , Neurilemoma/patología , Neoplasias del Sistema Nervioso Periférico/diagnóstico por imagen , Neoplasias del Sistema Nervioso Periférico/patología , Neoplasias de la Médula Espinal/diagnóstico por imagen , Neoplasias de la Médula Espinal/patología
2.
Cochrane Database Syst Rev ; 7: CD012582, 2019 07 02.
Artículo en Inglés | MEDLINE | ID: mdl-31264707

RESUMEN

BACKGROUND: The diagnosis and treatment of a brain or spinal cord tumour can have a huge impact on the lives of patients and their families with family caregiving often resulting in considerable burden and distress. Meeting the support needs of family caregivers is critical to maintain their emotional and physical health. Although support for caregivers is becoming more widely available, large-scale implementation is hindered by a lack of high-quality evidence for its effectiveness in the neuro-oncology caregiver population. OBJECTIVES: To assess the effectiveness of supportive interventions at improving the well-being of caregivers of people with a brain or spinal cord tumour. To assess the effects of supportive interventions for caregivers in improving the physical and emotional well-being of people with a brain or spinal cord tumour and to evaluate the health economic benefits of supportive interventions for caregivers. SEARCH METHODS: We searched the Cochrane Central Register of Controlled Trials (CENTRAL; 2018, Issue 7), MEDLINE via Ovid, and Embase via Ovid. We also handsearched relevant published conference abstracts (previous five years), publications in the two main journals in the field (previous year), searched for ongoing trials via ClinicalTrials.gov, and contacted research groups in the field. The initial search was in March 2017 with an update in August 2018 (handsearches completed in January 2019). SELECTION CRITERIA: We included all randomised controlled trials (RCTs) where caregivers of neuro-oncology patients constituted more than 20% of the sample and which evaluated changes in caregiver well-being following any supportive intervention. DATA COLLECTION AND ANALYSIS: Two review authors independently selected studies and carried out risk of bias assessments. We aimed to extract data on the outcomes of psychological distress, burden, mastery, quality of patient-caregiver relationship, quality of life, and physical functioning. MAIN RESULTS: In total, the search identified 2102 records, of which we reviewed 144 in full text. We included eight studies. Four interventions focused on patient-caregiver dyads and four were aimed specifically at the caregiver. Heterogeneity of populations and methodologies precluded meta-analysis. Risk of bias varied, and all studies included only small numbers of neuro-oncology caregivers (13 to 56 participants). There was some evidence for positive effects of caregiver support on psychological distress, mastery, and quality of life (low to very low certainty of evidence). No studies reported significant effects on caregiver burden or quality of patient-caregiver relationship (low to very low certainty of evidence). None of the studies assessed caregiver physical functioning. For secondary outcomes (patient emotional or physical well-being; health economic effects), we found very little to no evidence for the effectiveness of caregiver support. We identified five ongoing trials. AUTHORS' CONCLUSIONS: The eight small-scale studies included employed different methodologies across different populations, with low certainty of evidence overall. It is not currently possible to draw reliable conclusions regarding the effectiveness of supportive interventions aimed at improving neuro-oncology caregiver well-being. More high-quality research is needed on support for family caregivers of people diagnosed, and living, with a brain or spinal cord tumour.


Asunto(s)
Adaptación Psicológica , Cuidadores/psicología , Calidad de Vida , Estrés Psicológico/prevención & control , Cuidado Terminal/psicología , Neoplasias Encefálicas/psicología , Familia/psicología , Amigos/psicología , Humanos , Ensayos Clínicos Controlados Aleatorios como Asunto , Apoyo Social , Neoplasias de la Médula Espinal/psicología
3.
Bone Joint J ; 99-B(7): 979-986, 2017 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-28663407

RESUMEN

AIMS: The aim of the study was to compare measures of the quality of life (QOL) after resection of a chordoma of the mobile spine with the national averages in the United States and to assess which factors influenced the QOL, symptoms of anxiety and depression, and coping with pain post-operatively in these patients. PATIENTS AND METHODS: A total of 48 consecutive patients who underwent resection of a primary or recurrent chordoma of the mobile spine between 2000 and 2015 were included. A total of 34 patients completed a survey at least 12 months post-operatively. The primary outcome was the EuroQol-5 Dimensions (EQ-5D-3L) questionnaire. Secondary outcomes were the Patient-Reported Outcome Measurement Information System (PROMIS) anxiety, depression and pain interference questionnaires. Data which were recorded included the indication for surgery, the region of the tumour, the number of levels resected, the status of the surgical margins, re-operations, complications, neurological deficit, length of stay in hospital and rate of re-admission. RESULTS: The median EQ-5D-3L score was 0.71 (interquartile range (IQR) 0.44 to 0.79) which is worse than the national average in the United States of 0.85 (p < 0.001). Anxiety (median: 55 (IQR 49 to 61), p = 0.031) and pain (median: 61 (IQR 56 to 68), p < 0.001) were also worse than the national average in the United States (50), while depression was not (median: 52 (IQR 38 to 57), p = 0.513). Patients who underwent a primary resection had better QOL and less anxiety, depression and pain compared with those who underwent resection for recurrent or residual disease. The one- and five-year probabilities were 0.96 and 0.74 for survival, 0.07 and 0.25 for tumour recurrence, and 0.02 and 0.16 for developing distant metastasis. A total of 25 local complications occurred in 20 patients (42%), and there were 50 systemic and other complications in 25 patients (52%) within 90 days. CONCLUSION: These patient reported outcomes and oncological and surgical outcomes can be used when counselling patients and to aid decision-making when planning surgery. Cite this article: Bone Joint J 2017;99-B:979-86.


Asunto(s)
Cordoma/psicología , Cordoma/cirugía , Calidad de Vida , Neoplasias de la Médula Espinal/psicología , Neoplasias de la Médula Espinal/cirugía , Anciano , Ansiedad/psicología , Cordoma/patología , Depresión/psicología , Evaluación de la Discapacidad , Femenino , Humanos , Masculino , Persona de Mediana Edad , Estadificación de Neoplasias , Dolor Postoperatorio/psicología , Medición de Resultados Informados por el Paciente , Dosis de Radiación , Neoplasias de la Médula Espinal/patología , Encuestas y Cuestionarios , Tomografía Computarizada por Rayos X , Estados Unidos
4.
Spine J ; 17(5): 636-644, 2017 05.
Artículo en Inglés | MEDLINE | ID: mdl-27856381

RESUMEN

BACKGROUND CONTEXT: Patient-reported outcomes are becoming increasingly important when investigating results of patient and disease management. In sacral tumor, the symptoms of patients can vary substantially; therefore, no single questionnaire can adequately account for the full spectrum of symptoms and disability. PURPOSE: The purpose of this study is to analyze redundancy within the current sacral tumor survey and make a recommendation for an updated version based on the results and patient and expert opinions. STUDY DESIGN/SETTING: A survey study from a tertiary care orthopedic oncology referral center was used. PATIENT SAMPLE: The patient sample included 70 patients with sacral tumors (78% chordoma). OUTCOME MEASURES: The following 10 questionnaires included in the current sacral tumor survey were evaluated: the Patient-Reported Outcomes Measurement Information System (PROMIS) Global Item short form, PROMIS Pain Intensity short form, PROMIS Pain Interference short form, PROMIS Neuro-QOL v1.0 Lower Extremity Function short form, PROMIS v1.0 Anxiety short form, the PROMIS v1.0 Depression short form, the International Continence Society Male short form, the Modified Obstruction-Defecation Syndrome questionnaire, the PROMIS Sexual Function Profile v1.0, and the Stoma Quality of Life tool. METHODS: We performed an exploratory factor analysis to calculate the possible underlying latent traits. Spearman rank correlation coefficients were used to measure to what extent the questionnaires converged. We hypothesized the existence of six domains based on current literature: mental health, physical health, pain, gastrointestinal symptoms, sexual function, and urinary incontinence. To assess content validity, we surveyed 32 patients, 9 orthopedic oncologists, 1 medical oncologist, 1 radiation oncologist, and 1 orthopedic oncology nurse practitioner with experience in treating sacral tumor patients on the relevance of the domains. RESULTS: Reliability as measured by Cronbach alpha ranged from 0.65 to 0.96. Coverage measured by floor and ceiling effects ranged from 0% to 52% and from 0% to 30%, respectively. Explanatory factor analysis identified three traits to which the questionnaires that were expected to measure a similar construct correlated the most: mental health, physical function, and pain. Content validity index demonstrated low disagreement among patients (range: 0.10-0.18) and high agreement among physicians (range: 0.91-1.0) on the relevance of the proposed domains. Social health was identified by 50% of the commenting patients as an important yet missing domain. CONCLUSIONS: The current sacral tumor survey is incomplete and time-consuming, and not all surveys are appropriate for the sacral tumor population. Our recommended survey contains less than half the questions and includes the newly recognized social health domain.


Asunto(s)
Cordoma/psicología , Calidad de Vida , Neoplasias de la Médula Espinal/psicología , Encuestas y Cuestionarios/normas , Adulto , Anciano , Cordoma/diagnóstico , Femenino , Humanos , Región Lumbosacra/patología , Masculino , Persona de Mediana Edad , Reproducibilidad de los Resultados , Neoplasias de la Médula Espinal/diagnóstico
5.
J Neurosurg Spine ; 25(5): 640-645, 2016 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-27341053

RESUMEN

OBJECTIVE Resection significantly improves the clinical symptoms and functional outcomes of patients with intradural extramedullary tumors. However, patient quality of life following resection has not been adequately investigated. The aim in this retrospective analysis of prospectively collected quality of life outcomes is to analyze the efficacy of resection of intradural extramedullary spinal tumors in terms of quality of life markers. METHODS A retrospective review of a single institutional neurosurgical administrative database was conducted to analyze clinical data. The Oswestry Disability Index (ODI), visual analog scale (VAS) for pain, and the EQ-5D-3 L descriptive system were used to analyze quality of life preoperatively, less than 1 month postoperatively, 1-3 months postoperatively, 3-12 months postoperatively, and more than 12 months postoperatively. RESULTS The ODI scores increased perioperatively at the < 1-month follow-up from 36 preoperatively to 47. Relative to preoperative values, the ODI score decreased significantly at 1-3, 3-12, and > 12 months to 23, 17, and 20, respectively. VAS scores significantly decreased from 6.1 to 3.5, 2.4, 2.0, and 2.9 at the < 1-month, 1- to 3-, 3- to 12-, and > 12-month follow-ups, respectively. EQ-5D mobility significantly worsened at the < 1-month follow-up but improved at the 3- to 12-and > 12-month follow-ups. EQ-5D self-care significantly worsened at the < 1-month follow-up but significantly improved by the 3- to 12-month follow-up. EQ-5D usual activities improved at the 1- to 3-, 3- to 12-, and > 12-month follow-ups. EQ-5D pain and discomfort significantly improved at all follow-up points. EQ-5D anxiety and depression significantly improved at 1- to 3-month and 3- to 12-month follow-ups. CONCLUSIONS Resection of intradural extramedullary spine tumors appears to significantly improve patient quality of life by decreasing patient disability and pain and by improving each of the EQ-5D domains.


Asunto(s)
Ependimoma/cirugía , Neurilemoma/cirugía , Neurofibroma/cirugía , Neoplasias de la Médula Espinal/cirugía , Actividades Cotidianas , Dolor en Cáncer/psicología , Dolor en Cáncer/cirugía , Bases de Datos Factuales , Evaluación de la Discapacidad , Ependimoma/fisiopatología , Ependimoma/psicología , Femenino , Estudios de Seguimiento , Humanos , Masculino , Persona de Mediana Edad , Neurilemoma/fisiopatología , Neurilemoma/psicología , Neurofibroma/fisiopatología , Neurofibroma/psicología , Procedimientos Neuroquirúrgicos/efectos adversos , Dimensión del Dolor , Estudios Prospectivos , Calidad de Vida , Estudios Retrospectivos , Neoplasias de la Médula Espinal/fisiopatología , Neoplasias de la Médula Espinal/psicología , Factores de Tiempo , Resultado del Tratamiento
6.
Int J Palliat Nurs ; 22(1): 37-43, 2016 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-26804955

RESUMEN

Malignant spinal cord compression (MSCC) is a devastating complication of metastatic cancer. The majority of existing studies focus on treatment guidelines for MSCC, with little emphasis on the impact that MSCC has on quality of life (QoL) for this patient group. This literature review aims to critically appraise available literature focusing on QoL for patients with MSCC. Relevant literature was identified from key electronic databases. A dearth of credible studies representative of the patient population with MSCC was found. Thematic analysis was used as a guide to identify key themes that impact on QoL. Interestingly, patients with MSCC generally report good QoL and low levels of distress in over 50% of cases. However, a significant percentage of patients are distressed. The review concludes that increased awareness and further research into the impact of MSCC is required.


Asunto(s)
Actitud Frente a la Salud , Enfermería Oncológica/métodos , Pacientes/psicología , Calidad de Vida/psicología , Compresión de la Médula Espinal/psicología , Neoplasias de la Médula Espinal/psicología , Femenino , Humanos , Masculino , Metástasis de la Neoplasia , Relaciones Enfermero-Paciente , Compresión de la Médula Espinal/enfermería , Neoplasias de la Médula Espinal/epidemiología , Neoplasias de la Médula Espinal/enfermería , Reino Unido/epidemiología
7.
J Neurosurg Pediatr ; 13(2): 170-7, 2014 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-24359210

RESUMEN

OBJECT: Presently, the best available treatment for intramedullary spinal cord tumors (IMSCTs) in children is microsurgery with the objective of maximal tumor removal and minimal neurological morbidity. The latter has become manageable with the development and standard use of intraoperative neurophysiological monitoring. Traditionally, the perioperative neurological evaluation is based on surgical or spinal cord injury scores focusing on sensorimotor function. Little is known about the quality of life after such operations; therefore, this study was designed to investigate the impact of surgery for IMSCTs on the quality of life in children. METHODS: Twelve consecutive pediatric patients treated for IMSCT were included in this retrospective fixed cohort study. A multidimensional questionnaire-based quality of life instrument, the Pediatric Quality of Life Questionnaire version 4 (PedsQL 4.0), was chosen to analyze follow-up data. This validated instrument particularly allows for a comparison between a patient cohort and a healthy pediatric sample population. RESULTS: Of 11 mailed questionnaires (1 patient had died of progressive disease), 10 were returned, resulting in a response rate of 91%. There were 8 low-grade lesions (5 pilocytic astrocytomas, 1 ganglioglioma, 1 hemangioblastoma, and 1 cavernoma) and 4 high-grade lesions (2 anaplastic gangliogliomas, 1 glioblastoma, and 1 glioneuronal tumor). The mean age at diagnosis was 7.5 years, the mean follow-up was 4.2 years, and 83% of the patients were male. Total resection was achieved in 5 patients and subtotal resection in 7. Four patients had undergone 2 or more resections. The 4 patients with high-grade tumors and 2 with incompletely resected low-grade tumors underwent adjuvant treatment (2 chemotherapy and 4 both radiotherapy and chemotherapy). The mean modified McCormick Scale score at the time of diagnosis was 1.7; at the time of follow-up, 1.5. The mean PedsQL 4.0 total score in the low-grade group was 78.5; in the high-grade group, 82.6. There was no significant difference in PedsQL 4.0 scores between the patient cohort and the normal population. CONCLUSIONS: In a small cohort of children who had undergone surgery for IMSCTs with a mean follow-up of 4.2 years, quality of life scores according to the PedsQL 4.0 instrument were not different from those in a normal sample population.


Asunto(s)
Calidad de Vida , Neoplasias de la Médula Espinal/cirugía , Adolescente , Astrocitoma/cirugía , Niño , Preescolar , Croacia , Femenino , Estudios de Seguimiento , Ganglioglioma/cirugía , Alemania , Hemangioblastoma/cirugía , Hemangioma Cavernoso/cirugía , Humanos , Masculino , Estudios Retrospectivos , España , Neoplasias de la Médula Espinal/patología , Neoplasias de la Médula Espinal/psicología , Encuestas y Cuestionarios , Suiza , Traducciones
8.
J Neurosurg Spine ; 19(6): 721-35, 2013 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-24116679

RESUMEN

OBJECT: The most appropriate method to determine the quality of life of patients with intradural primary spinal tumors (IPSTs) is not still well established. METHODS: Clinical data in 234 patients who underwent surgery for intradural spinal disease were collected prospectively. The 36-Item Short Form Health Survey (SF-36), a generic score scale, was administered to 148 patients with IPSTs to demonstrate if the survey can be used to effectively evaluate these patients. Forty-eight patients were excluded because they did not complete the protocol. The study was finally conducted with 100 patients (45 male and 55 female) with IPSTs, and the results were compared with those of 2 other scales: the McCormick scale and the Aminoff-Logue scale. RESULTS: Construct validity was demonstrated by confirming the hypothesized relationship between the scores of the SF-36 and the McCormick scale (p = 0.003), the Aminoff-Logue gait subscale (p = 0.025), the Aminoff-Logue micturition subscale (p = 0.013), and the Aminoff-Logue defecation subscale (p = 0.004). Reliability was demonstrated for all 8 SF-36 domain scales and the Physical Component Summary and the Mental Component Summary of the SF-36, where in each the Cronbach alpha satisfied the Nunnally criterion of > 0.85. CONCLUSIONS: The authors' results demonstrated that SF-36 provides valid and reliable data for patients with IPSTs and that the survey can be used appropriately to evaluate these patients.


Asunto(s)
Calidad de Vida/psicología , Neoplasias de la Médula Espinal/psicología , Encuestas y Cuestionarios/normas , Adolescente , Adulto , Anciano , Femenino , Humanos , Masculino , Persona de Mediana Edad , Estudios Prospectivos , Índice de Severidad de la Enfermedad , Neoplasias de la Médula Espinal/complicaciones , Neoplasias de la Médula Espinal/cirugía , Resultado del Tratamiento , Adulto Joven
9.
Clin Neurol Neurosurg ; 113(5): 407-10, 2011 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-21208740

RESUMEN

Glioblastoma multiforme (GBM) often occurs in the supratentorial white matter including corpus callosum. However, spinal leptomeningeal metastasis in cases of supratentorial GBM has been reported to be rare and there is usually a long interval between the cerebral lesion and the spinal seeding. We report here a case of GBM at the corpus callosum and other parts of the brain with simultaneous manifestation of spinal leptomeningeal seeding. The patient exhibited an abnormal motor behavior of the left hand as mirror movement when the right hand was performing a unimanual task (diagonistic dyspraxia) which is a sign of lesion of the posterior part and splenium of the corpus callosum. There were also signs of peripheral nerve or nerve root involvement suggestive of spinal metastasis without any sensory symptoms. He died 3 months after the onset of the symptoms confirming the poor prognosis and short survival time in cases with spinal leptomeningeal metastasis reported previously. The cerebral GBM with spinal seeding was disclosed at autopsy.


Asunto(s)
Neoplasias Encefálicas/patología , Cuerpo Calloso/patología , Glioblastoma/patología , Neoplasias Meníngeas/secundario , Neoplasias de la Médula Espinal/secundario , Neoplasias Encefálicas/psicología , Resultado Fatal , Glioblastoma/psicología , Humanos , Imagen por Resonancia Magnética , Masculino , Neoplasias Meníngeas/psicología , Persona de Mediana Edad , Siembra Neoplásica , Examen Neurológico , Médula Espinal/patología , Neoplasias de la Médula Espinal/psicología
10.
Cent Eur Neurosurg ; 72(2): 71-4, 2011 May.
Artículo en Inglés | MEDLINE | ID: mdl-20496309

RESUMEN

OBJECTIVE: Despite modern microsurgical techniques and interdisciplinary treatment options, intramedullary spinal cord tumors often lead to profound neurological deficits. Some patients may search for non-scientific or unconventional therapeutic options to treat the symptoms induced by the tumor itself or arising from treatment. The extent of non-scientific therapy use, the rationale behind it, and costs of these forms of therapy are unknown. METHODS: A questionnaire consisting of 20 questions was sent to 60 patients of a single neurosurgical center who had undergone surgery for an intramedullary spinal cord tumor. A retrospective study was carried out based on this data. Histological findings ranged from ependymoma (52.9%), hemangioblastoma (17.6%), cavernoma (14.7%), astrocytoma (8.8%), oligodendroglioma (2.9%) to ganglioglioma (2.9%). Non-scientific therapy was defined as a method not used in routine clinical practice for the treatment of symptoms induced by intramedullary spinal cord tumors. RESULTS: A total of 38 questionnaires was returned. About 55.3% of the patients claimed to use non-scientific therapies. No significant difference between histological types and the percentage of alternative therapy use was detected. There was a gender difference. One third (non user group) to one fourth (user group) did not feel adequately informed about their disease. The monthly costs for non-scientific therapies ranged from 50 to 500 Euros. The main motive for the use of non-scientific therapies was the wish to try everything possible. CONCLUSION: In the daily clinical routine, patients' use of non-scientific therapies may be largely overlooked and underestimated. Neurooncologists should be aware of this phenomenon and encourage an open but critical dialogue with their patients.


Asunto(s)
Terapias Complementarias/estadística & datos numéricos , Neoplasias de la Médula Espinal/cirugía , Neoplasias de la Médula Espinal/terapia , Adulto , Anciano , Actitud , Terapias Complementarias/economía , Costos y Análisis de Costo , Femenino , Humanos , Inmunidad/fisiología , Masculino , Persona de Mediana Edad , Cuidados Posoperatorios , Complicaciones Posoperatorias/psicología , Complicaciones Posoperatorias/terapia , Estudios Retrospectivos , Autocuidado , Factores Sexuales , Neoplasias de la Médula Espinal/psicología , Encuestas y Cuestionarios
11.
Neurosurg Focus ; 29(3): E15, 2010 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-20809756

RESUMEN

OBJECT: The objective of the study was to quantify the improvement in pain levels for patients who have undergone surgery for intramedullary spinal cord cavernous malformations (SCCMs). METHODS: The author reviewed medical records of patients who underwent surgery for an intramedullary SCCM between 2003 and 2010. Numerical pain scores (range 0-10) were recorded preoperatively and at follow-up. The follow-up period exceeded 1 year. Neurological status and subjective outcomes were assessed. Each patient underwent follow-up MR imaging. RESULTS: Five patients were identified with SCCMs who underwent surgery: 4 with thoracic and 1 with cervical lesions. Patients had been conservatively managed for an average of 5 years prior to surgery, and none had a history of acute hemorrhage or neurological deterioration during the observation period. The primary indication for surgery in each patient was pain, although 4 of 5 patients had some evidence of myelopathy on examination. Pain improved from a mean preoperative score of 8.6 to mean score of 2.0 (p < 0.01) at 1 month. Pain scores then increased to 3.7 (p < 0.01) at 1 year. All patients had some improvement in pain. No new motor weakness was noted, but all patients had increased symptoms of posterior-column dysfunction and numbness after surgery. CONCLUSIONS: Spinal cord intramedullary cavernous malformations are increasingly being diagnosed early with patients presenting with mostly pain symptoms. Removal of the lesion is reliably associated with improvement in pain scores but often the pain improvement is transient. While long-term worsening of pain scores occurs, at 1-year follow-up, patients reported pain scores were improved over preoperative scores. In all patients some degree of postoperative posterior-column dysfunction was present. Some of the immediate pain relief may be due to analgesia related to the myelotomy of newly described posterior column pain pathways. In patients with severe pain, surgery to remove SCCMs reduced the overall pain level at 1 year.


Asunto(s)
Hemangioma Cavernoso del Sistema Nervioso Central/cirugía , Dolor Postoperatorio/diagnóstico , Dolor/diagnóstico , Neoplasias de la Médula Espinal/cirugía , Femenino , Hemangioma Cavernoso del Sistema Nervioso Central/diagnóstico , Hemangioma Cavernoso del Sistema Nervioso Central/psicología , Humanos , Persona de Mediana Edad , Procedimientos Neuroquirúrgicos/métodos , Dolor/epidemiología , Dolor/cirugía , Dimensión del Dolor/estadística & datos numéricos , Dolor Postoperatorio/epidemiología , Cuidados Preoperatorios/estadística & datos numéricos , Índice de Severidad de la Enfermedad , Neoplasias de la Médula Espinal/diagnóstico , Neoplasias de la Médula Espinal/psicología , Resultado del Tratamiento
12.
Spine (Phila Pa 1976) ; 34(22 Suppl): S26-30, 2009 Oct 15.
Artículo en Inglés | MEDLINE | ID: mdl-19829274

RESUMEN

STUDY DESIGN: Systematic review of the literature. OBJECTIVE: To identify psychosocial issues affecting patients with a diagnosis of a spinal column or cord tumor. METHODS: Using the keywords "cancer communication," "psychosocial care," "cancer patient," and "spine cancer patient," a review of the English literature was performed on Medline, EMBASE, and PsycInfo, a database of the psychology and psychiatry literature in the United States. The relevant articles were reviewed; in addition, relevant references from selected articles were searched. The Spine Oncology Study Group, an international panel of spine oncology surgeons, medical and radiation oncologists, identified 2 key questions to be addressed in the course of the systematic review of the literature. Pertinent manuscripts were rated as being of high, moderate, low, or very low quality. Using the Grading of Recommendations, Assessment, Development, and Evaluation evidence-based review system, the 2 key questions were answered using literature review and expert opinion. RESEARCH QUESTIONS: 1. Who are the allied health care professionals necessary for the comprehensive care of the spine tumor patient? 2. Does compassionate communication (in giving life altering information) affect outcome? What tools can be used in communication with the spine tumor patient? RESULTS: Systematic review of the 3 databases yielded 228 articles pertaining to the psychosocial care of spine tumor patients; systematic review yielded 326 articles addressing communication in cancer patients. Systematic search of the Medline, EMBASE, and PsycInfo databases failed to identify any articles that specifically addressed the 2 questions of interest in the spine tumor patient population. The literature search identified low and very low quality evidence; 2 randomized controlled studies were identified. Although neither specifically pertained to the spine tumor patient population, these articles were reviewed and graded as low-quality evidence. CONCLUSION: A multidisciplinary group of allied health care professionals is a necessary prerequisite for the effective psychosocial care of the spine tumor patient. Compassionate communication, in the form of group sessions, telephone support groups, or internet based groups, can alleviate the psychosocial discomfort experienced by spine tumor patients.


Asunto(s)
Pacientes/psicología , Neoplasias de la Médula Espinal/psicología , Neoplasias de la Columna Vertebral/psicología , Adaptación Psicológica , Humanos , Relaciones Médico-Paciente , Calidad de Vida/psicología
13.
J Clin Neurosci ; 16(12): 1599-603, 2009 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-19818628

RESUMEN

Syringomyelia is a centromedullary syndrome that can be treated conservatively or with various neurosurgical procedures. We hypothesized that different clinical subgroups of patients exist, which would necessitate the need for individualised neurosurgical intervention and maintenance to achieve optimal quality of life (QoL). Using both the short-form 36-item (SF-36) questionnaire and the Syringomyelia Disability Index, clinical and QoL data was prospectively assessed in 142 patients with syringomyelia. Cluster analysis was then performed on the subscale results of the SF-36. The SF-36 scores of those with syringomyelia were significantly lower than those of the general German population, as well as when compared to those patients suffering from other chronic diseases. The SF-36 scores were independent of the syringomyelia patients' underlying syrinx pathology. Cluster analysis of the QoL patterns revealed four indicative patient groups. Syringomyelia is a chronic, progressive disease, and the syrinx itself appears to be the source of the symptoms, rather than the underlying pathology. The identified QoL subgroups in syringomyelia patients indicate the necessity of appropriate diagnosis and treatment of the pathology so that expansion of the syrinx cavity is reduced, maintaining QoL and functionality of these patients.


Asunto(s)
Calidad de Vida , Neoplasias de la Médula Espinal/psicología , Siringomielia/psicología , Adolescente , Adulto , Anciano , Análisis de Varianza , Análisis por Conglomerados , Evaluación de la Discapacidad , Progresión de la Enfermedad , Femenino , Estado de Salud , Humanos , Masculino , Persona de Mediana Edad , Procedimientos Neuroquirúrgicos/métodos , Estudios Retrospectivos , Neoplasias de la Médula Espinal/cirugía , Encuestas y Cuestionarios , Siringomielia/cirugía , Adulto Joven
14.
J Neurooncol ; 95(2): 271-279, 2009 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-19521664

RESUMEN

Medulloblastoma patients treated at the Institute Curie between 1980 and 2000 were reviewed. Only patients whose primary treatment included craniospinal radiation were considered. Surviving patients were identified and evaluated by means of self-report questionnaires using the Health Utility Index (HUI). Psychosocial functioning, employment, and other health-related indicators were recorded. Seventy-three patients were treated during the study period. At a median follow-up from diagnosis of 14.4 years, 49 patients were alive and 45 surviving patients could be contacted. Late sequelae were frequent, particularly neurological deficits (71%) and endocrine complications (52%). Impairments of psychosocial functioning, including employment, driving capacity, independent living, and marital status, were identified in most patients. Most long-term medulloblastoma survivors suffer persistent deficits in several domains, with a significant impact on their psychosocial functioning. These findings reinforce the importance of early intervention programs for all survivors in order to reduce the psychosocial impacts of their disease.


Asunto(s)
Neoplasias Cerebelosas/radioterapia , Irradiación Craneana , Meduloblastoma/radioterapia , Calidad de Vida , Neoplasias de la Médula Espinal/radioterapia , Adolescente , Neoplasias Cerebelosas/mortalidad , Neoplasias Cerebelosas/psicología , Niño , Preescolar , Femenino , Estudios de Seguimiento , Estado de Salud , Humanos , Lactante , Masculino , Meduloblastoma/mortalidad , Meduloblastoma/psicología , Pronóstico , Neoplasias de la Médula Espinal/mortalidad , Neoplasias de la Médula Espinal/psicología , Encuestas y Cuestionarios , Tasa de Supervivencia , Sobrevivientes , Resultado del Tratamiento
15.
Rech Soins Infirm ; (89): 109-21, 2007 Jun.
Artículo en Francés | MEDLINE | ID: mdl-17674617

RESUMEN

The purpose of this article is to describe a new educational practice that demonstrates new teaching strategies used to help nursing students better integrate a family systems approach in their clinical practice. This narration emerges from a qualitative study aiming to include the components of teaching practice, facilitating a change in family care approach toward a practice that considers the "person-family" as a unit of care. The methodological course of this qualitative research is guided by interrelationship of action research and introspective analysis globally supported by systemic constructivist perspectives towards the construction of an educational practice for teaching the family systems approach in nursing science, and the development of new knowledge concerning this practice. This article presents one of the six narratives from an educational situation. A partial description of the results demonstrates that the professor-researcher being present in a different manner creates and uses innovative strategies in her teaching, such as narratives, self dialogue and dramatization which helped nursing bachelor students in transforming their thoughts towards acting in a systemic way towards the family.


Asunto(s)
Bachillerato en Enfermería/organización & administración , Enfermería de la Familia/organización & administración , Atención Dirigida al Paciente/organización & administración , Enseñanza/organización & administración , Adolescente , Adulto , Actitud del Personal de Salud , Actitud Frente a la Salud , Familia/psicología , Femenino , Investigación sobre Servicios de Salud , Humanos , Masculino , Narración , Investigación en Educación de Enfermería , Investigación Metodológica en Enfermería , Filosofía en Enfermería , Relaciones Profesional-Familia , Desarrollo de Programa , Evaluación de Programas y Proyectos de Salud , Investigación Cualitativa , Quebec , Neoplasias de la Médula Espinal/enfermería , Neoplasias de la Médula Espinal/psicología , Estudiantes de Enfermería/psicología
16.
J Pediatr Oncol Nurs ; 20(3): 133-40, 2003.
Artículo en Inglés | MEDLINE | ID: mdl-12776261

RESUMEN

Our objective was to identify commonly reported problems and helpful resources important to children with brain or spinal cord tumors and siblings during phases of illness. Affected children and siblings from 40 families responded to a regional survey. Items encompassed four general content areas: health care provider interactions, medical information/education, health care utilization, and psychosocial. Children rated individual items as helpful, a problem, and for importance; relative frequencies were derived. One-third or more affected children reported important problems: hospitalization/surgery--help with schoolwork; hospital discharge--help with changes in physical activity, appearance, moods, special needs at school; adjuvant treatment--Internet information, help with moods; and remission--socializing. One-third or more siblings reported important problems: diagnosis--information about etiology and prognosis, manner of physician and parents in providing information; hospitalization/surgery--information about prognosis, help with schoolwork; hospital discharge--help with schoolwork; adjuvant treatment--help with changes in sister or brother's appearance, physical activity, moods, and information about the treatment; end of life--treatment of sister's or brother's pain, information about dying, family harmony, support from friends, help with schoolwork, and preparation for the death. Consideration of problems and helpful resources will provide the framework for developing and evaluating intervention strategies at each phase of illness.


Asunto(s)
Adaptación Psicológica , Actitud Frente a la Salud , Neoplasias Encefálicas/diagnóstico , Psicología Infantil , Hermanos/psicología , Neoplasias de la Médula Espinal/diagnóstico , Adolescente , Adulto , Neoplasias Encefálicas/psicología , Neoplasias Encefálicas/terapia , Niño , Progresión de la Enfermedad , Grupos Focales , Conducta de Ayuda , Hospitalización , Humanos , Evaluación de Necesidades , New England , Investigación Metodológica en Enfermería , Investigación Cualitativa , Recuperación de la Función , Apoyo Social , Neoplasias de la Médula Espinal/psicología , Neoplasias de la Médula Espinal/terapia , Encuestas y Cuestionarios , Cuidado Terminal
17.
Arch Dis Child ; 84(1): 61-64, 2001 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-11124789

RESUMEN

BACKGROUND: Low grade astrocytomas are among the most common central nervous system tumours in children. AIMS: To identify risk factors for the development of persistent intellectual handicap. METHODS: The notes of 30 children with histologically proven low grade astrocytoma who presented during the period 1987-96 were reviewed. Thirteen of these children who were diagnosed with intracranial tumours between 1992 and 1996 underwent cognitive assessment one year after the completion of treatment. RESULTS: Low grade astrocytomas were found in the cerebellum (59%), thalamus (17%), cerebral hemispheres (10%), and the cervical spinal cord (9%). Where possible all patients were treated with gross total resection of the tumour. Symptomatic children with tumours judged to be inoperable underwent biopsy followed by radiotherapy (13%). Three patients developed progressive disease following surgery and underwent repeat surgery and radiotherapy. Survival at a median follow up of 75 months (range 30-131) is 97%. At one year after the completion of treatment persisting cognitive impairment was common. The strongest predictor of IQ scores was the duration of symptoms of increased intracranial pressure preoperatively. CONCLUSIONS: Although the overall survival rate of children with low grade astrocytoma is excellent, significant long term disability occurs. Early diagnosis is essential to reduce postoperative cognitive morbidity.


Asunto(s)
Astrocitoma/terapia , Neoplasias Encefálicas/terapia , Trastornos del Conocimiento/etiología , Inteligencia , Neoplasias de la Médula Espinal/terapia , Adolescente , Astrocitoma/patología , Astrocitoma/psicología , Neoplasias Encefálicas/patología , Neoplasias Encefálicas/psicología , Niño , Preescolar , Femenino , Estudios de Seguimiento , Humanos , Lactante , Masculino , Estudios Retrospectivos , Factores de Riesgo , Neoplasias de la Médula Espinal/patología , Neoplasias de la Médula Espinal/psicología , Tasa de Supervivencia
18.
Crit Care Nurs Clin North Am ; 12(3): 269-79, 2000 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-11855232

RESUMEN

Nurses play a key role in care of patients with brain metastases and spinal cord compression. Care of this patient population is unique because the skills and knowledge of medical-surgical, neurologic, oncologic, and critical care nurses are required. With the wide variability among patients, a highly individualized care plan is necessary to meet the tremendous challenges of caring for patients with metastatic central nervous system disease.


Asunto(s)
Neoplasias Encefálicas/secundario , Neoplasias Encefálicas/terapia , Cuidados Críticos/métodos , Compresión de la Médula Espinal/etiología , Neoplasias de la Médula Espinal/secundario , Neoplasias de la Médula Espinal/terapia , Neoplasias Encefálicas/diagnóstico , Neoplasias Encefálicas/psicología , Competencia Clínica , Terapia Combinada , Humanos , Imagen por Resonancia Magnética , Rol de la Enfermera , Enfermería Oncológica/métodos , Planificación de Atención al Paciente , Calidad de Vida , Neoplasias de la Médula Espinal/complicaciones , Neoplasias de la Médula Espinal/diagnóstico , Neoplasias de la Médula Espinal/psicología , Tomografía Computarizada por Rayos X
19.
Neurosurgery ; 45(6): 1292-7; discussion 1297-8, 1999 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-10598695

RESUMEN

OBJECTIVE: To assess the quality of life (QOL) of a group of patients treated for intracranial germinoma with biopsy followed by prophylactic whole-neuraxis radiation therapy. METHODS: The Short-form-36 and Functional Assessment of Cancer Therapy QOL questionnaires were completed by 22 of 27 eligible adults treated with whole-neuraxis irradiation for biopsy-proven, marker-negative intracranial germinomas between 1976 and 1996. In addition, data were obtained regarding height and weight, medications, ability to work, and educational achievement. RESULTS: The patients' QOL was generally good. All of the patients are in or have completed high school; nine are in or have completed college, and five have advanced degrees. Patients rated themselves lower on the physical composite scale of the Short-form-36 (average, 46 versus 54 in a normal population). On the mental composite scale, patients rated themselves more favorably than the normal population (average, 54 versus 49 in a normal population). Patients were normally proportioned for height and weight, but female patients tended to be short. Age at radiation did not correlate with QOL. CONCLUSION: The QOL of adults treated for marker-negative germinoma with prophylactic whole-neuraxis irradiation is generally good. These data should serve as a benchmark for newer treatment protocols eliminating or reducing radiation.


Asunto(s)
Neoplasias Encefálicas/radioterapia , Germinoma/radioterapia , Calidad de Vida , Neoplasias de la Médula Espinal/radioterapia , Sobrevivientes , Logro , Adolescente , Adulto , Biopsia , Estatura/efectos de la radiación , Peso Corporal/efectos de la radiación , Neoplasias Encefálicas/patología , Neoplasias Encefálicas/psicología , Niño , Irradiación Craneana , Evaluación de la Discapacidad , Femenino , Estudios de Seguimiento , Germinoma/patología , Germinoma/psicología , Humanos , Masculino , Persona de Mediana Edad , Neoplasias de la Médula Espinal/patología , Neoplasias de la Médula Espinal/psicología , Sobrevivientes/psicología , Resultado del Tratamiento
20.
Z Psychosom Med Psychoanal ; 32(4): 337-48, 1986.
Artículo en Alemán | MEDLINE | ID: mdl-3811639

RESUMEN

The present article is concerned with the description and discussion of the results from an investigation on 34 paraspastic of paraplegic male patients. Data on the quality and intensity of functional impairment of the bladder and the intestine and on disorders with regard to the sexual sphere as well as on their psychosocial compensation were obtained in a semi-structured interview of up to four hours duration. Subsequently the data were evaluated with the aid of descriptive statistics. Predominant were two modes of coping with the handicap: Young paraplegics and paraspastics suffering from a traumatic lesion overcame their functional deficits by means of instrumental compensation and almost all of them--after passing through a course of institutionally prescribed developmental steps--achieved a readjustment both with regard to their relationship with the opposite sex and to their professional career. Older handicapped whose lesions were caused by disease persisted in resignation or hypochondriac concentration upon their state of health and were socially isolated.


Asunto(s)
Adaptación Psicológica , Paraplejía/psicología , Ajuste Social , Adolescente , Adulto , Anciano , Estreñimiento/psicología , Disfunción Eréctil/psicología , Pesar , Humanos , Masculino , Persona de Mediana Edad , Rol del Enfermo , Enfermedades de la Médula Espinal/psicología , Traumatismos de la Médula Espinal/psicología , Neoplasias de la Médula Espinal/psicología , Vejiga Urinaria Neurogénica/psicología
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