Predictors of distress and poorer quality of life in High Grade Glioma patients (original) (raw)
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Health-related quality of life in high-grade glioma patients
Chinese Journal of Cancer, 2014
Gliomas are malignant primary brain tumors and yet incurable. Palliation and the maintenance or improvement of the patient's quality of life is therefore of main importance. For that reason, health-related quality of life (HRQoL) has become an important outcome measure in clinical trials, next to traditional outcome measures such as overall and progression-free survivals, and radiological response to treatment. HRQoL is a multidimensional concept covering physical, psychological, and social domains, as well as symptoms induced by the disease and its treatment. HRQoL is assessed by using self-reported, validated questionnaires. Various generic HRQoL questionnaires, which can be supplemented with a brain tumorspecific module, are available. Both the tumor and its treatment can have a negative effect on HRQoL. However, treatment with surgery, radiotherapy, chemotherapy, and supportive treatment may also improve patients' HRQoL, in addition to extending survival. It is expected that the impact of HRQoL measurements in both clinical trials and clinical practice will increase. Hence, it is important that HRQoL data are collected, analyzed, and interpreted correctly. Methodological issues such as selection bias and missing data may hamper the interpretation of HRQoL data and should therefore be accounted. In clinical trials, HRQoL can be used to assess the benefits of a new treatment strategy, which should be weighed carefully against the adverse effects of that treatment. In daily clinical practice, HRQoL assessments of an individual patient can be used to inform physicians about the impact of a specific treatment strategy, and it may facilitate the communication between the physicians and the patients.
JBNC - JORNAL BRASILEIRO DE NEUROCIRURGIA, 2018
Introduction: According to the World Health Organization health is not merely the abscence of disease but a state of complete physical, mental, and social well-being. To measure health and the effects of health care implies to assess changes in the frequency and severity of diseases and an estimation of well being. This can be done by measuring the improvement in the patient's quality of life. Quality of life is a broad and complex concept that involves the individual's perception of their life and is affected by the person's physical health, psychological state, personal beliefs, social relationships and their interaction with the environment. Objective: To review articles on QOL assessment in patients with glioma. Material and method: A critical analysis of the literature was made. Conclusion: There are many QOL instruments available but very few designed for brain tumor patients. Brain tumors have an impact in someone's life that goes beyond physical impairment. ...
Neuro-Oncology, 2019
Introduction Literature analysing how patients with a provisional low-grade glioma perceive their own quality of life prior to any surgical or oncological intervention is scarce. This patient group are often highly functioning individuals, able to lead ordinary lives which stresses that their management must be carefully considered in a holistic sense. Low grade gliomas represent 5 % of brain tumours and they are typically of a younger cohort who will be less equipped to manage the uncertainties a diagnosis like this brings. Methods Prospective single centre cohort study over 14 months where 56 patients completed the EORTC QLQ – BN 20 and 30 prior to initial consultation in the dedicated low grade glioma clinic. Results 54% of patients did not feel ‘limited in doing work or other daily activities’ but of those who were affected to some degree, 21% of women felt ‘very much affected’ compared to 3% of men. 78% of patients expressed to a degree some ‘uncertainty about the future’ and t...
Frontiers in Neurology, 2019
Health related quality of life (HRQOL) measures have become increasingly important in the management of glioma patients in both research and clinical practice settings. Functional impairment is common in low-grade and high-grade glioma patients as the disease has both oncological and neurological manifestations. Natural disease history as well as medical or surgical treatment can negatively influence HRQOL. There are no universal standards for HRQOL assessment in glioma patients. In this study, we examine patient perspectives on functional outcome domains and report the prevalence of impairments rates using the National Institutes of Health (NIH) Patient Reported Outcomes Measurement Information System (PROMIS) and Neuro-QOL item banks as measures of HRQOL. Retrospective analysis of a prospectively collected dataset involving 79 glioma patients reveals that quality of life concerns are the most important consideration behind making decisions about treatment in 80.7% of patients. The prevalence of functional impairment by PROMIS and NEURO-QOL assessment is high, ranging from 28.6% in the physical function domain to 43.9% in the cognitive function domain. Pain and anxiety related to physical decline is higher in LGG patients compared to HGG patients. Aphasia severity also impacts HRQOL. The results of this study suggest that the PROMIS and NEURO-QOL assessments may be important HRQOL metrics for future use in larger clinical research and clinical trial settings.
The relationship between function, quality of life and coping in patients with low-grade gliomas
Supportive Care in Cancer, 2006
Objectives: The principal aim of the study was to describe function, quality of life and coping with illness-related problems in patients with low-grade gliomas (LGG), to evaluate the need of support. A second aim was to investigate how function, quality of life and coping were related. Materials and methods: Thirty-nine patients with a diagnosis of LGG answered the European Organization for Research and Treatment of Cancer Core Quality of Life Questionnaire (EORTC-QLQ-C30) and the Ways of Coping Questionnaire (WCQ). The patients' level of function was assessed in accordance with the WHO performance status scale. Results and discussion: Nearly all patients were capable of self-care, but less than half were able to carry out normal activities without restriction. Problems with fatigue, sleep disturbances and pain were most frequent. Most difficulties were reported in the domains, Role, Cognitive and Emotional functioning. Seventeen patients (45%) had scores indicating low overall quality of life. Ratings of overall quality of life and fatigue had the strongest relationship. The trend in the results suggested that mental problems have a stronger impact on quality of life than physical ones. Emotionfocused coping dominated. There was a significant relationship between coping by escape-avoidance and lower level of emotional functioning. Conclusions: The results of this study indicate that a multidisciplinary team is needed for assessment and treatment of the different problems in patients with LGG. Furthermore, special attention should be paid to patients who use coping by escape-avoidance, as this is associated with emotional distress.
Journal of Rehabilitation Medicine, 2013
Objective: To describe patient-reported disability in primary brain tumours using the International Classification of Functioning, Disability and Health (ICF); and comparison with categories within the core sets for stroke and traumatic brain injury. Method: A prospective community cross-sectional survey (n = 106) following definitive treatment for primary brain tumours. Problems reported by participants were linked with ICF categories using 'linkage' rules. Participants rated 'activities and participation' and 'environmental factor' components of ICF checklist (using qualifiers); and responses compared with categories within core sets for stroke and traumatic brain injury. Results: Participant mean age 51 years, median time since diagnosis 2 years; over a third had high grade tumours. Participants considered 44 categories in 'activities and participation' and 16 categories (barriers) in 'environmental factors' as relevant (≥ 10% response) using checklist. Reported problems included: Mobility, Domestic life, General tasks/ demands; and Human made changes to environment. Although the linked categories for brain tumour survivors were similar to those in the core sets for stroke and traumatic brain injury, there was more commonality with the traumatic brain injury core set. Conclusion: The existing comprehensive stroke and traumatic brain injury core sets incorporate issues relevant to brain tumour survivors in post-acute settings. Findings from this report will assist in defining a future core set for brain tumour; the possibility however, of using a single core set relevant to most long-term neurological conditions needs to be explored.
1997
The purpose of the study was to assess health-related quality of life (HQL) in patients with high-grade malignant glioma of the brain. The EORTC core Quality of Life Questionaire (QLQ-C30) and a Brain Cancer Module (BCM20) were administered at baseline and several weeks later (follow-up) to 105 patients with either recently-diagnosed (n = 41) or recurrent (n = 64) malignant glioma. In addition, the attending neurologists completed a standard neurological examination, a modified Barthel Activities of Daily Living Index (BADLI) and the Karnofsky Performance Scale (KPS). In a preliminary step, the QLQ-C30 was found to have acceptable reliability (internal consistency and test-retest reliability). Newly-diagnosed patients and those with a KPS of 80-100 had significantly better physical, role and cognitive functioning and global quality of life with less fatigue, visual disorder, motor dysfunction, communication deficit, weakness of both legs and trouble controlling the bladder than did those with recurrent disease and those with a KPS of 50-70. Similarly, those capable of independent activities of daily living, as reported on the BADLI, had higher functioning scores and less fatigue than did those who were not independent. Patients with dysphasia, mental confusion or motor deficit on neurological examination reported significantly lower levels of physical, role, cognitive, emotional and social functioning and global quality of life than did patients not having these difficulties. They also had significantly more symptoms. In patients with deteriorating neurological status between baseline and follow-up, there was a marked decline in cognitive, physical, role, emotional and social functioning and global quality of life and an increase in fatigue. Thus, there are significant differences in HQL between patients with newly-diagnosed and recurrent brain cancer and between patients with differing KPS and BADLI scores. In addition, the HQL scores provide details not provided by the KPS and the BADLI. Deterioration in neurological function is accompanied by significant deterioration in a range of HQL domains and in global quality of life. Table 1. Patient characteristics (n = 105) No.