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1.
Pediatr Blood Cancer ; 71(5): e30910, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38342954

RESUMO

BACKGROUND: The contribution of tumor type, multimodal treatment, and other patient-related factors upon long-term cognitive sequelae in infant brain tumor survivors remains undefined. We add our retrospective analysis of neuropsychological and quality of survival (QoS) outcome data of survivors of atypical teratoid/rhabdoid tumors (ATRT) and extracranial malignant rhabdoid tumors of the soft tissues (eMRT) and kidneys (RTK) treated within the same framework. Neuropsychological data from children with ATRT were compared to data from children with non-irradiated low-grade glioma (LGG). PATIENTS AND METHODS: Following surgery, patients (0-36 months at diagnosis) had received radio-chemotherapy (up to 54 Gy; ATRT: n = 13; eMRT/RTK: n = 7), chemotherapy only (LGG: n = 4; eMRT/RTK: n = 1) or had been observed (LGG: n = 11). Neuropsychological evaluation employing comparable tests was performed at median 6.8 years (ATRT), 6.6 years (eMRT/RTK), and 5.2 years (LGG) post diagnosis. RESULTS: We detected sequelae in various domains for all tumor types. Group comparison showed impairments, specifically in fluid intelligence (p = .041; d = 1.11) and visual processing (p = .001; d = 2.09) in ATRT patients when compared to LGG patients. Results for psychomotor speed and attention abilities were significantly below the norm for both groups (p < .001-.019; d = 0.79-1.90). Diagnosis predicted impairments of cognitive outcome, while sex- and age-related variables did not. QoS outcome for all rhabdoid patients displayed impairments mainly in social (p = .008; d = 0.74) and school functioning (p = .048; d = 0.67), as well as lower overall scores in psychosocial functioning (p = .023; d = 0.78) and quality of life (p = .006; d = 0.79) compared to healthy controls. CONCLUSION: Survivors of infant ATRT experience various late effects in cognition and QoS following multimodal treatment, while infant LGG patients without radiotherapy demonstrated comparable impairments in psychomotor and attention abilities. Early onset and multimodal treatment of rhabdoid tumors require close monitoring of neuropsychological and QoS sequelae.


Assuntos
Neoplasias Encefálicas , Neoplasias do Sistema Nervoso Central , Glioma , Neoplasias Neuroepiteliomatosas , Tumor Rabdoide , Teratoma , Criança , Lactente , Humanos , Tumor Rabdoide/complicações , Tumor Rabdoide/terapia , Estudos Retrospectivos , Qualidade de Vida , Teratoma/complicações , Teratoma/terapia , Neoplasias Encefálicas/complicações , Neoplasias Encefálicas/terapia , Neoplasias do Sistema Nervoso Central/patologia , Progressão da Doença , Percepção Visual , Cognição , Sobreviventes
2.
Pediatr Blood Cancer ; 70(5): e30171, 2023 05.
Artigo em Inglês | MEDLINE | ID: mdl-36734371

RESUMO

The importance of measuring quality of survival within paediatric oncology trials is increasingly recognised. However, capturing neuropsychological outcomes and other aspects of quality of survival in the context of large or multinational trials can be challenging. We provide examples of protocols designed to address this challenge recently employed in clinical trials in the USA and Europe. We discuss their respective strengths and challenges, obstacles encountered and future opportunities for transatlantic collaboration.


Assuntos
Oncologia , Neoplasias , Criança , Humanos , Europa (Continente) , Neoplasias/tratamento farmacológico , Cognição
3.
Neuropsychol Rehabil ; : 1-21, 2022 Dec 29.
Artigo em Inglês | MEDLINE | ID: mdl-36580420

RESUMO

OBJECTIVES: The growing population of survivors of childhood brain tumors present the challenge of long-term quality of survival. The domains most affected by tumor and treatment are those implicated in development of typical intellectual functions: attention, working memory, and processing speed, with consequent effects upon function and quality of life. In this paper we present service evaluation data on the 12-month effect upon processing speed, visual and auditory attentional domains in 29 patients receiving methylphenidate aged 5-16 years (Mean=10.6). METHODS: Patients received immediate-release methylphenidate and were converted to modified-release as appropriate. Mean optimal dose of immediate-release methylphenidate was 0.34 mg/kg per dose (range 0.2-0.67). RESULTS: Patients showed a significant positive impact of methylphenidate on attention in all tests of selective visual attention from the Test of Everyday Attention for Children 2. A significant improvement was also shown on response time. Significant change was not found on psychometric measures of sustained auditory or visual attention, or selective auditory attention. Ratings of Health-Related Quality of Life showed a positive benefit of methylphenidate at 12 months. Side effects were minimal and not statistically significant. CONCLUSIONS: Survivors of childhood brain tumor with attentional and processing speed deficit show clinical benefit from methylphenidate.

4.
Childs Nerv Syst ; 35(3): 411-420, 2019 03.
Artigo em Inglês | MEDLINE | ID: mdl-30554263

RESUMO

PURPOSE: This is the first UK multi-centre case-controlled study with follow-up in excess of 10 years to report the neurocognitive, academic and psychological outcomes of individuals diagnosed with a brain tumour in early childhood. Children enrolled into the UKCCSG CNS 9204 trial, diagnosed with intracranial ependymoma when aged ≤ 36 months old, who received a primary chemotherapy strategy to defer or avoid radiotherapy, were recruited. METHODS: Outcomes of those who relapsed and subsequently received radiotherapy (n = 13) were compared to those enrolled who did not relapse (n = 16), age-matched controls-diagnosed with solid non-central nervous system (SN-CNS; n = 15) tumours or low-grade posterior fossa pilocytic astrocytoma (PFPA; n = 15), and normative data. Analyses compared nine neurocognitive outcomes as primary measures with quality of survival as secondary measures. RESULTS: Relapsed ependymoma participants performed significantly worse than their non-relapsed counterparts on measures of Full Scale IQ, Perceptual Reasoning, Word Reading and Numerical Operations. The relapsed ependymoma group performed significantly worse than SN-CNS controls on all primary measures, whereas non-relapsing participants only differed significantly from SN-CNS controls on measures of Processing Speed and General Memory. Relapsed ependymoma participants fared worse than all groups on measures of quality of survival. CONCLUSIONS: The relapsed irradiated ependymoma group demonstrated the most significantly impaired neurocognitive outcomes at long-term follow-up. Non-relapsing participants demonstrated better outcomes than those who relapsed. Results tentatively suggest avoiding radiotherapy helped preserve neurocognitive and learning outcomes of individuals diagnosed with ependymoma when aged ≤ 36 months old. Prospective neurocognitive surveillance is required. Recommendations for clinical and research practice are provided.


Assuntos
Neoplasias Encefálicas/terapia , Sobreviventes de Câncer/estatística & dados numéricos , Ependimoma/terapia , Transtornos Neurocognitivos/etiologia , Protocolos de Quimioterapia Combinada Antineoplásica/uso terapêutico , Estudos de Casos e Controles , Desenvolvimento Infantil/efeitos dos fármacos , Desenvolvimento Infantil/efeitos da radiação , Pré-Escolar , Feminino , Humanos , Lactente , Recém-Nascido , Masculino , Recidiva Local de Neoplasia/radioterapia , Radioterapia/efeitos adversos , Radioterapia/métodos , Recuperação de Função Fisiológica/efeitos dos fármacos , Recuperação de Função Fisiológica/efeitos da radiação , Reino Unido
5.
Neuro Oncol ; 2024 Jun 05.
Artigo em Inglês | MEDLINE | ID: mdl-38835160

RESUMO

BACKGROUND: Neurocognition can be severely affected in pediatric brain tumor survivors. We analyzed the association of cognitive functioning with radiotherapy dose, postoperative cerebellar mutism syndrome (pCMS), hydrocephalus, intraventricular methotrexate (MTX) application, tumor localization and biology in pediatric survivors of a posterior fossa tumor. METHODS: Subdomain-specific neurocognitive outcome data from 279 relapse-free survivors of the HIT-2000 trial (241 medulloblastoma and 38 infratentorial ependymoma) using the Neuropsychological Basic Diagnostic (NBD) tool based on Cattell-Horn-Carroll's model for intelligence were analyzed. RESULTS: Cognitive performance 5.14 years (mean; range=1.52-13.02) after diagnosis was significantly below normal for all subtests. Processing speed and psychomotor abilities were most affected. Influencing factors were domain-specific: CSI-dose had strong impact on most subtests. pCMS was associated with psychomotor abilities (ß=-0.25 to -0.16) and processing speed (ß=-0.32). Postoperative hydrocephalus correlated with crystallized intelligence (ß=-0.20) and short-term memory (ß=-0.15), age with crystallized intelligence (ß=0.15) and psychomotor abilities (ß=-0.16 and ß=-0.17). Scores for fluid intelligence (ß=-0.23), short-term memory (ß=-0.17) and visual processing (ß=-0.25) declined, and scores for selective attention improved (ß=0.29) with time after diagnosis. CONCLUSION: Dose of CSI was strongly associated with neurocognitive outcome. Low psychomotor abilities and processing speed both in patients treated with and without CSI suggest a strong contribution of the tumor and its surgery on these functions. Future research therefore should analyze strategies to both reduce CSI-dose and toxicity caused by other treatment modalities.

6.
Children (Basel) ; 11(2)2024 Feb 02.
Artigo em Inglês | MEDLINE | ID: mdl-38397299

RESUMO

Methylphenidate has an established role in the management of attention-deficit hyperactivity disorder and attentional deficit secondary to brain injury. Increasingly, methylphenidate is considered for the attentional deficit in paediatric brain tumour survivors. A small number of studies have explored the benefit of methylphenidate in this population; however, studies are of short duration and do not address the impact of medium to long-term use of methylphenidate on intellectual function. We identified six patients who are survivors of a paediatric brain tumour aged 12-18 years with greater than three years of use of methylphenidate for inclusion in a clinical case series. We used this patient cohort to identify key questions to inform a future long-term cohort study. Linear mixed model and reliable change index analyses were performed on the data. Reliable change index analyses showed benefits to working memory (n = 3), processing speed (n = 2), and full-scale IQ (n = 4) performance for some patients. This exploratory case series suggests the potential medium to long-term benefit of methylphenidate in brain tumour survivorship, indicating the need for larger, appropriately powered studies. These patient data, alongside a discussion of learning points from our previously published studies, are used as a conduit for the identification of questions relating to the use of methylphenidate in a paediatric brain tumour.

7.
Front Surg ; 9: 878477, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35495769

RESUMO

Objective: To investigate the effect of Triangle tiered and graded management on the self-management behavior and quality of survival of Parkinson's Disease (PD) patients. Methods: Eighty ambulatory PD patients admitted to the neurology outpatient clinic of our hospital from June 2020 to January 2021 were selected for the study. Eighty patients were divided into 40 cases each in the test group and the control group using the random number table method. Patients in the control group were given conventional treatment and care, while in the test group, Triangle hierarchical management was applied on the basis of the control group. Non-motor symptoms [assessed by the Montreal Cognitive Inventory (MoCA), the Scale for Outcomes in PD for Autonomic Symptoms disability Scale (SCOPA-DS) and the Nocturnal Scale (SCOPA-NS)], motor symptoms [assessed by the Functional Gait Assessment (FGA), the Modified Ashworth Scale, and the Unified Parkinson's Disease Rating Scale (UPDRS-III)], quality of life (assessed by Barthel Index), medication adherence (self-administered medication adherence questionnaire), quality of survival (assessed by the 39-item Parkinson's Disease Quality of Survival Questionnaire, PDQ-39), and self-management effectiveness (assessed by the Chronic Disease Self-Efficacy Scale, symptom management and disease co-management) were compared between the two groups before and after the intervention. The two groups were also observed for satisfaction with care. Results: After the intervention, the MoCA score, FGA score, Barthel Index, Medication adherence and all scores of self-management effectiveness were significantly higher in the test group than in the control group (P < 0.05); the SCOPA-DS score, SCOPA-NS score, Ashworth score, UPDRS-III score and PDQ-39 score were significantly lower than in the control group (P < 0.05). Satisfaction with nursing care was significantly higher in the test group than in the control group (P < 0.05). Conclusion: The application of Triangle's tiered and graded management to the home care of ambulatory PD patients was effective in improving their non-motor and motor symptoms, their ability to perform daily activities, medication adherence and self-management effectiveness, and their overall survival outcome.

8.
Eur J Paediatr Neurol ; 25: 59-67, 2020 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-31753708

RESUMO

The highest incidence rate of childhood brain tumours is in children below the age of five years, who are particularly vulnerable to the effects of treatments. The assessment of quality of survival (QoS) in multiple domains is essential to compare the outcomes for different tumour types and treatment regimens. The aim of this position statement is to present the domains of health and functioning to be assessed in children from birth to five years, to advance the collection of a common QoS data set in European brain tumour trials. The QoS group of the European Society of Paediatric Oncology (SIOP-E) Brain Tumour group conducted consensus discussions over a period of six years to establish domains of QoS that should be prioritised in clinical trials involving children under 5 years. The domains of health and functioning that were agreed to affect QoS included: medical outcomes (e.g. vision, hearing, mobility, endocrine), emotion, behaviour, adaptive behaviour, and cognitive functioning. As for children aged five years and older, a 'core plus' approach is suggested in which core assessments are recommended for all clinical trials. The core component for children from birth to three years includes indirect assessment which, in this age-group, requires proxy assessment by a parent, of cognitive, emotional and behaviour variables and both direct and indirect endocrine measures. For children from four years of age direct cognitive assessment is also recommended as 'core'. The 'plus' components enable the addition of assessments which can be selected by individual countries and/or by, age-, treatment-, tumour type- and tumour location-specific trials.


Assuntos
Neoplasias Encefálicas/terapia , Ensaios Clínicos como Assunto/normas , Qualidade de Vida , Criança , Pré-Escolar , Europa (Continente) , Feminino , Humanos , Lactente
9.
Eur J Paediatr Neurol ; 23(4): 560-570, 2019 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-31182404

RESUMO

It is increasingly accepted that survival alone is an inadequate measure of the success of childhood brain tumour treatments. Consequently, there is growing emphasis on capturing quality of survival. Ependymomas are the third most frequently occurring brain tumours in childhood and present significant clinical challenges. European Society of Paediatric Oncology Ependymoma II is a comprehensive international program aiming to evaluate outcomes under different treatment regimens and improve diagnostic accuracy. Importantly, there has been agreement to lower the age at which children with posterior fossa ependymoma undergo focal irradiation from three years to either eighteen months or one year of age. Hitherto radiotherapy in Europe had been reserved for children over three years due to concerns over adverse cognitive outcomes following irradiation of the developing brain. There is therefore a duty of care to include longitudinal cognitive follow-up and this has been agreed as an essential trial outcome. Discussions between representatives of 18 participating European countries over 10 years have yielded European consensus for an internationally accepted test battery for follow-up of childhood ependymoma survivors. The 'Core-Plus' model incorporates a two-tier approach to assessment by specifying core tests to establish a minimum dataset where resources are limited, whilst maintaining scope for comprehensive assessment where feasible. The challenges leading to the development of the Core-Plus model are presented alongside learning from the initial stages of the trial. We propose that this model could provide a solution for future international trials addressing both childhood brain tumours and other conditions associated with cognitive morbidity.


Assuntos
Assistência ao Convalescente/métodos , Neoplasias Encefálicas/radioterapia , Ensaios Clínicos como Assunto/métodos , Cognição/efeitos da radiação , Ependimoma/radioterapia , Adolescente , Sobreviventes de Câncer/psicologia , Criança , Pré-Escolar , Irradiação Craniana/efeitos adversos , Europa (Continente) , Feminino , Humanos , Lactente , Masculino , Morbidade
10.
Eur Urol ; 76(2): 228-237, 2019 08.
Artigo em Inglês | MEDLINE | ID: mdl-31060822

RESUMO

BACKGROUND: Prostate cancer incidence, treatment, and survival rates vary throughout the UK, but little is known about regional differences in quality of survival. OBJECTIVE: To investigate variations in patient-reported outcomes between UK countries and English Cancer Alliances. DESIGN, SETTING, AND PARTICIPANTS: A cross-sectional postal survey of prostate cancer survivors diagnosed 18-42mo previously. OUTCOME MEASUREMENTS AND STATISTICAL ANALYSIS: Urinary, bowel, and sexual problems and vitality were patient reported using the Expanded Prostate Cancer Index Composite (EPIC-26) questionnaire. General health was also self-assessed. Regional variations were identified using multivariable log-linear regression. RESULTS AND LIMITATIONS: A total of 35823 men responded, 60.8% of those invited. Self-assessed health was significantly lower than the UK average in Wales and Scotland. Respondents reported more urinary incontinence in Scotland, more urinary irritation/obstruction in Scotland and Northern Ireland (NI), poorer bowel function in Scotland and NI, worse sexual function in Scotland, and reduced vitality/hormonal function in Scotland, Wales, and NI. Self-assessed health was poorer than the English average in South Yorkshire and North-East and Cumbria, with more urinary incontinence in North-East and Cumbria and Peninsula, greater sexual problems in West Midlands, and poorer vitality in North-East and Cumbria and West Midlands. Limitations include difficulty identifying clinically significant differences and limited information on pretreatment conditions. CONCLUSIONS: Despite adjustment for treatment, and clinical and sociodemographic factors, quality of survival among prostate cancer survivors varied by area of residence. Adoption of best practice from areas performing well could support enhanced survival quality in poorer performing areas, particularly with regard to bowel problems and vitality, where clinically relevant differences were reported. PATIENT SUMMARY: We conducted a UK-wide survey of patient's quality of life after treatment for prostate cancer. Outcomes were found to vary depending upon where patients live. Different service providers need to ensure that all prostate cancer patients receive the same follow-up care.


Assuntos
Sobreviventes de Câncer , Disfunção Erétil/epidemiologia , Neoplasias da Próstata/terapia , Qualidade de Vida , Incontinência Urinária/epidemiologia , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Inglaterra/epidemiologia , Nível de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Irlanda do Norte/epidemiologia , Medidas de Resultados Relatados pelo Paciente , Prevalência , Escócia/epidemiologia , País de Gales/epidemiologia
12.
Neurooncol Pract ; 4(3): 161-170, 2017 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-31385949

RESUMO

BACKGROUND: The relationship between direct assessments of cognitive performance and questionnaires assessing quality of survival (QoS) is reported to be weak-to-nonexistent. Conversely, the associations between questionnaires evaluating distinct domains of QoS tend to be strong. This pattern remains understudied. METHODS: In the HIT-SIOP PNET4 randomized controlled trial, cognitive assessments, including Full Scale, Verbal and Performance IQ, Working Memory, and Processing Speed, were undertaken in 137 survivors of standard-risk medulloblastoma from 4 European countries. QoS questionnaires, including self-reports and/or parent reports of the Behavior Rating Inventory of Executive Function (BRIEF), the Health Utilities Index, the Strengths and Difficulties Questionnaire, and the Pediatric Quality of Life Inventory, were completed for 151 survivors. Correlations among direct cognitive assessments, QoS questionnaires, and clinical data were examined in participants with both assessments available (n = 86). RESULTS: Correlations between direct measures of cognitive performance and QoS questionnaires were weak, except for moderate correlations between the BRIEF Metacognition Index (parent report) and working memory (r = .32) and between health status (self-report) and cognitive outcomes (r = .35-.44). Correlations among QoS questionnaires were moderate to strong both for parent and self-report (r = .39-.76). Principal Component Analysis demonstrated that questionnaires and cognitive assessments loaded on 2 separate factors. CONCLUSIONS: We hypothesize that the strong correlations among QoS questionnaires is partially attributable to the positive/negative polarity of all questions on the questionnaires, coupled with the relative absence of disease-specific questions. These factors may be influenced by respondents' personality and emotional characteristics, unlike direct assessments of cognitive functioning, and should be taken into account in clinical trials.

13.
Neurooncol Pract ; 4(2): 82-97, 2017 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-31385962

RESUMO

BACKGROUND: Medulloblastoma is the most common malignant central nervous system tumor in children. Treatment most often includes surgical resection, craniospinal irradiation, and adjuvant chemotherapy. Although survival has improved dramatically, the tumor and its treatments have devastating long-term side effects that negatively impact quality of survival (QoS). The objective was to review the literature on QoS following childhood medulloblastoma. METHODS: This narrative review is based on a Medline database search and examination of the reference lists of papers selected. RESULTS: Frequent problems after medulloblastoma treatment include medical complications, such as long-term neurological and sensory (hearing loss) impairments; endocrine deficits, including growth problems; and secondary tumors. Neurocognitive impairment is repeatedly reported, with decreasing cognitive performances over time. Although all cognitive domains may be affected, low processing speed, attention difficulties, and working memory difficulties are described as the core cognitive deficits resulting from both cerebellar damage and the negative effect of radiation on white matter development. Long-term psychosocial limitations include low academic achievement, unemployment, and poor community integration with social isolation. Important negative prognostic factors include young age at diagnosis, conventional craniospinal radiotherapy, presence of postoperative cerebellar mutism, and perioperative complications. The influence of environmental factors, such as family background and interventions, remains understudied. CONCLUSION: Future studies should focus on the respective impact of radiation, cerebellar damage, genomic and molecular subgroup parameters, and environmental factors on cognitive and psychosocial outcomes. Long-term (probably lifelong) follow-up into adulthood is required in order to monitor development and implement timely, suitable, multi-disciplinary rehabilitation interventions and special education or support when necessary.

14.
J Cancer Surviv ; 11(2): 211-232, 2017 04.
Artigo em Inglês | MEDLINE | ID: mdl-27834041

RESUMO

PURPOSE: Patients with advanced disease are living longer and commonly used patient-reported outcome measures (PROMs) may miss relevant elements of the quality of extended survival. This systematic review examines the measures used to capture aspects of the quality of survival including impact on patients' everyday lives such as finances, work and family roles. METHODS: Searches were conducted in MEDLINE, EMBASE, CINAHL and PsycINFO restricted to English language articles. Information on study characteristics, instruments and outcomes was systematically extracted and synthesised. A predefined set of criteria was used to rate the quality of studies. RESULTS: From 2761 potentially relevant articles, 22 met all inclusion criteria, including 10 concerning financial distress, 3 on roles and responsibilities and 9 on multiple aspects of social well-being. Generally, studies were not of high quality; many lacked bias free participant selection, had confounding factors and had not accounted for all participants. High levels of financial distress were reported and were associated with multiple demographic factors such as age and income. There were few reports concerned with impacts on patients' roles/responsibilities in everyday life although practical and emotional struggles with parenting were identified. Social difficulties were common and associated with multiple factors including being a caregiver. Many studies were single time-point surveys and used non-validated measures. Exceptions were employment of the COST and Social Difficulties Inventory (SDI), validated measures of financial and social distress respectively. CONCLUSIONS: Impact on some important parts of patients' everyday lives is insufficiently and inconsistently captured. Further PROM development focussing on roles and responsibilities, including work and caring for dependents, is warranted. IMPLICATIONS FOR CANCER SURVIVORS: Factors such as finances, employment and responsibility for caring for dependants (e.g. children and elderly relatives) can affect the well-being of cancer survivors. There is a need to ensure that any instruments used to assess patients' social well-being are broad enough to include these areas so that any difficulties arising can be better understood and appropriately supported.


Assuntos
Neoplasias/psicologia , Medidas de Resultados Relatados pelo Paciente , Inquéritos e Questionários/estatística & dados numéricos , Sobreviventes/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Humanos , Pessoa de Meia-Idade
15.
Eur J Paediatr Neurol ; 19(2): 202-10, 2015 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-25617909

RESUMO

INTRODUCTION: There is increasing recognition of the long-term sequelae of brain tumours treated in childhood. Five year survival rates now exceed 75% and assessing the quality of survival (QoS) in multiple domains is essential to any comparison of the benefits and harms of treatment regimens. AIM: The aim of this position statement is to rationalise assessments and facilitate collection of a common data set across Europe. Sufficient numbers of observations can then be made to enable reliable comparisons between outcomes following different tumour types and treatments. METHODS: This paper represents the consensus view of the QoS working group of the Brain Tumour group of the European Society of Paediatric Oncology regarding domains of QoS to prioritise for assessment in clinical trials. This consensus between clinicians and researchers across Europe has been arrived at by discussion and collaboration over the last eight years. RESULTS: Areas of assessment discussed include core medical domains (e.g. vision, hearing, mobility, endocrine), emotion, behaviour, adaptive behaviour and cognitive functioning. CONCLUSIONS: A 'core plus' approach is suggested in which core assessments (both direct and indirect tests) are recommended for all clinical trials. The core component is a relatively brief screening assessment that, in most countries, is a sub-component of routine clinical provision. The 'plus' components enable the addition of assessments which can be selected by individual countries and/or tumour-, age-, and location-specific groups. The implementation of a QoS protocol common to all European clinical studies of childhood brain tumours is also discussed.


Assuntos
Neoplasias Encefálicas/mortalidade , Projetos de Pesquisa/normas , Análise de Sobrevida , Adolescente , Fatores Etários , Comportamento , Neoplasias Encefálicas/psicologia , Neoplasias Encefálicas/terapia , Criança , Pré-Escolar , Ensaios Clínicos como Assunto , Cognição , Glândulas Endócrinas/fisiopatologia , Europa (Continente)/epidemiologia , Feminino , Humanos , Masculino , Exame Neurológico , Qualidade de Vida , Taxa de Sobrevida , Resultado do Tratamento
16.
Eur J Paediatr Neurol ; 19(6): 619-39, 2015 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-26278499

RESUMO

BACKGROUND: Tumours of the central nervous system (CNS) are the most frequent solid tumours and the second most frequent type of cancer in children and adolescents. Overall survival has continuously improved in Germany, since an increasing number of patients have been treated according to standardised, multicentre, multimodal treatment recommendations, trials of the German Paediatric Brain Tumour Consortium (HIT-Network) or the International Society of Paediatric Oncology-Europe (SIOP-E) during the last decades. Today, two out of three patients survive. At least 8000 long-term childhood brain tumour survivors (CBTS) are currently living in Germany. They face lifelong disease- and treatment-related late effects (LE) and associated socioeconomic problems more than many other childhood cancer survivors (CCS). METHOD: We review the LE and resulting special needs of this particular group of CCS. RESULTS: Despite their increasing relevance for future treatment optimisation, neither the diversity of chronic and cumulative LE nor their pertinent risk factors and subsequent impact on quality of survival have yet been comprehensively addressed for CBTS treated according to HIT- or SIOP-E-protocols. Evidence-based information to empower survivors and stakeholders, as well as medical expertise to manage their individual health care, psychosocial and educational/vocational needs must still be generated and established. CONCLUSION: The establishment of a long-term research- and care network in Germany shall contribute to a European platform, that aims at optimising CBTSs' transition into adulthood as resilient individuals with high quality of survival including optimal levels of activity, participation and acceptance by society.


Assuntos
Neoplasias Encefálicas/complicações , Qualidade de Vida , Sobreviventes/psicologia , Adolescente , Criança , Europa (Continente) , Feminino , Alemanha , Humanos , Masculino , Fatores de Risco
17.
China Pharmacy ; (12): 4686-4690, 2017.
Artigo em Chinês | WPRIM | ID: wpr-668660

RESUMO

OBJECTIVE:To evaluate therapeutic efficacy of Aidi injection,Compound kushen injection,Kanglaite injection, Elemene injection and Brucea javanica oil emulsion injection in the treatment of malignant pleural effusion(MPE),and to provide evidence-based reference in clinic. METHODS:Retrieved from PubMed,EMBase,Cochrane library,CJFD,Wanfang database and CJFD,RCTs about Aidi injection,Compound kushen injection,Kanglaite injection,Elemene injection and B. javanica oil emulsion injection in the treatment of MPE were collected. Meta-analysis was conducted by using ADDIS 1.16.6 statistical software after data extraction and quality evaluation by modified Jadad scale. RESULTS:A total of 54 RCTs were included,involving 3404 patients. All RCTs were two legs with a total number of 108. Results of network Meta-analysis showed that compared with cisplat-in,Compound kushen injection [OR=2.19,95%CI(1.30,3.76),P<0.05],Elemene injection [OR=3.55,95%CI(2.43,5.32),P<0.05] and B. javanica oil emulsion injection [OR=1.92,95%CI(1.34,2.76),P<0.05] could significantly improve response rate of MPE patients,with statistical significance. Pairwise comparison showed response rate of Elemene injection was significantly higher than that of Aidi injection [OR=0.32,95%CI(0.17,0.56),P<0.05],Kanglaite injection [OR=0.30,95%CI(0.13,0.68),P<0.05] and B. javanica oil emulsion injection [OR=1.85,95%CI(1.10,3.17),P<0.05] in improving response rate. The probability ranking was Elemene injection>Compound kushen injection>B. javanica oil emulsion injection>Aidi injection=Kanglaite injection=cispl-atin. Compared with cisplatin,Aidi injection [OR=0.29,95%CI(0.16,0.54),P<0.05],Compound kushen injection [OR=0.44, 95%CI(0.18,0.96),P<0.05],Elemene injection [OR=0.21,95%CI(0.10,0.44),P<0.05] and B. javanica oil emulsion injection [OR=0.41,95%CI(0.23,0.70),P<0.05] could significantly improve the rate of quality of life improvement in MPE patients,with statistical significance. Pairwise comparison showed the rate of quality of life improvement of Elemene injection in MPE patients was significantly higher than that of Kanglaite injection [OR=4.84,95%CI(1.03,25.01),P<0.05]. The probability ranking was El-emene injection>Aidi injection>Compound kushen injection>B. javanica oil emulsion injection>Kanglaite injection>cisplatin.CONCLUSIONS:All 5 kinds of TCM injection can effective-ly treat MPE and improve the quality of life,among which El-emene injection is mostlikely to be the most effective interven-tion.

18.
Artigo em Chinês | WPRIM | ID: wpr-731836

RESUMO

Objective:To explore the effect of acupuncture and rehabilitation training on the quality of survival and cognitive function of patients with brain injuries. Methods:A total of 76 patients with brain injuries treated in our department from Jan 2014 to Apr 2015 were selected as the research object (n=76) . They were randomly divided into two groups, observation group and control group, 38 in each group. The patients in control group were treated by acupuncture and routine care. The patients in observation group were treated by acupuncture and rehabilitation training. The patients' cognitive function, life quality, ability of daily life were observed. Results:Before the treatment,the LOTCA and ADL scores of both groups had no significance for statistics (P>0.05) but improved after the treatment. At 4,8 weeks after treatment,the LOTCA and ADL scores in observation group were higher than those in control group (P<0.05) WHOQOL-BREF was used to survey the quality of survival,and the scores of mental health, psychological health, interpersonal relationship and social relationship in observation group were also higher than those in control group (P<0.05) . Conclusion:Brain injury patients treated with acupuncture and rehabilitation training can improve the patients' cognitive function,ability of daily life and quality of survival,and would be conducive to the long-term prognosis,which is worthy of promotion.

19.
Artigo em Coreano | WPRIM | ID: wpr-127669

RESUMO

Several prognostic factors have been implicated in survival prolongation in patients with metastatic brain tumors. Among these, surgery has been regarded as very significant one with respect to life prolongation and improving the quality of survival in such patients. From August 1982 through July 1996, a series of 31 patients with metastatic brain tumors among 785 patients with operated brain tumors, whose medical records, X-rays and follow-ups were avilable, was studied retrospectively to evaluate the beneficial effects of surgery. Despite the limitations inherent to the retrospective study and limited number of patients, we divided these patients into two groups to find out any statistical differences in terms of survival and quality of survival among them: 1) Conservative group(8 nonoperated patients: 5 patients with biopsy or partial resection): 13, and 2) Surgical treatment group(17 totally resected patients: one patient with subtotal resection): 18. The quality of survival was assessed by Karnofsky performance(KP) scale before and after each treatment. The survival of the patients in the surgical treatment group was longer than the conservative treatment group(14.5 months/10 months), but this was not statistically significant(p value: 0.3305). However, improvement of quality of survival, in terms of KP scale, was significantly higher in the surgical treatment group(p value: 0.0027). Although confounded by the lack of controlled, randomized study and limitations of retrospective study, aggressive surgery can be regarded to have a significant role in improving the quality of survival in patients with metastatic brain tumors.


Assuntos
Humanos , Biópsia , Neoplasias Encefálicas , Encéfalo , Seguimentos , Cuidados para Prolongar a Vida , Prontuários Médicos , Feniramina , Estudos Retrospectivos
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