Health-related quality of life in patients with brain tumors: limitations and additional outcome measures (original) (raw)
Related papers
Review on Quality of Life Issues in Patients with Primary Brain Tumors
The Oncologist, 2010
Health-related quality of life (HRQOL) has become an important outcome measure in clinical trials in primary brain tumor (i.e., glioma) patients, because they have an incurable disease. HRQOL is assessed using self-reported, validated questionnaires, addressing physical, psychological, emotional, and social issues. In addition to generic HRQOL instruments, disease-specific questionnaires have been developed, including for brain tumor patients. For the analysis and interpretation of HRQOL measurements, low compliance and missing data are methodological challenges.
Health-related quality of life or quantity of life: a difficult trade-off in primary brain tumors?
Seminars in oncology, 2014
Health-related quality of life (HRQoL) measurements have become increasingly important in brain tumor research, next to traditional outcome measures such as overall and progression-free survival. Several validated questionnaires have been developed to measure HRQoL in clinical trials, as well as in clinical practice. In brain tumor patients, both the tumor and treatment may have an impact on HRQoL, which can be positive and negative. When determining the net clinical benefit of a new treatment strategy, both the quantity and quality of life (QOL) should be considered. Because treatment may benefit or harm both quantity and QOL, a trade-off discussion may arise when these two outcomes are conflicting.
Quality of life in brain tumor patients
Journal of Neuro-Oncology, 1996
With the aim of evaluating the quality of life (QL) of 101 brain tumor patients, a multidimensional approach was adopted, using the Functional Living Index-Cancer (FLIC) as a global measure of well-being, the Karnofsky Performance Scale (KPS) and the Index of Independence in Activity of Daily Living (ADL) as indices of physical and functional dimensions, the State-Trait Anxiety Inventory (STAI) and the Self-Rating Depression Scale (SRDS) for psychological assessment, and neuropsychological tests for abstract reasoning, attention, memory and frontal lobe functions. The patients were grouped on the grounds of disease stage and treatment. The FLIC and KPS ratings increased from the patients who had just undergone surgery to patients who were disease-free after completing chemotherapy and radiotherapy, thus showing that the QL may improve during the disease despite aggressive treatments, providing there is no tumor recurrence. However, only the FLIC consistently discriminated the patients' stratification. The ADL revealed no between-group differences, whereas the STA1 and SRDS revealed the presence of emotional troubles at the beginning and at the end of treatment. Cognitive impairment was more serious after radiotherapy and chemotherapy, as well as in patients with tumor recurrence. The FLIC significantly correlated with all of the other scales used, showing that it is useful in summarizing both the physical and psychosocial impairment of brain tumor patients. Of the pathological variables, a tumor location in the anterior right hemisphere or diencephalon was associated with high FLIC ratings, may be due to the minor cognitive impairment observed in patients with these tumor sites. Of the demographic variables, the level of education was associated with high FLIC ratings, thus highlighting the role of psychosocial environment in improving the QL. The use of a multidimensional approach or a global index of well-being that also reflects psychosocial and cognitive aspects proved to be more appropriate than traditional functional instruments (such as the KPS) in assessing the QL of brain tumor patients and in detecting the extent of the disease.
Current Opinion in Neurology, 2008
The evaluation of new treatments in brain cancer should address outcomes such as functional status, symptoms, cognition and health-related quality of life (HRQOL), yet these are infrequently evaluated. This review focuses on instruments for measuring HRQOL in brain tumour patients and the recent developments in the field. HRQOL is now well accepted as a trial endpoint by the US Food and Drug Administration and the European Medicines Agency. Efforts to standardize HRQOL use in clinical trials are ongoing. Existing disease-specific instruments for brain tumour patients (e.g. EORTC BN-20, Functional Assessment of Cancer Therapy-Brain) appear to meet US Food and Drug Administration and European Medicines Agency requirements sufficiently. The EORTC BN-20 has recently completed the final validation process. The psychometric properties of single-item linear analogue scale assessments for patients with newly diagnosed high-grade gliomas were investigated. Nevertheless, only a few brain tumour trial results published over the last year reported on patients' HRQOL data or symptoms. The prognostic significance of HRQOL is debated as to whether it may have additional value over other well known prognostic factors. With an increase in treatment options for brain tumours and also the risk of long-term neurotoxicity, more detailed reporting of patients' HRQOL and symptoms is essential. The use of HRQOL evaluations in brain tumour trials should be strongly encouraged by the clinical and academic community.
Factors influencing quality of life in adult patients with primary brain tumors
Neuro-Oncology, 2012
We performed a literature review with respect to factors influencing health-related quality of life (QOL) in adults with primary brain tumors. A comprehensive, peer-reviewed literature search was performed including studies examining QOL in adults with high-grade gliomas and lowgrade gliomas and in routine neuro-oncology practice. The interpretation and implication of QOL domain scores may be different in high-grade, low-grade, and benign brain tumors. Several patient-related, treatment-related, and sociocultural factors influence QOL scores. Pretreatment baseline QOL domain scores have been shown to be a predictive parameter for survival function. Implementation of QOL scores in routine clinical practice is underused. QOL is an important outcome measure in the treatment of patients with brain tumors and should be incorporated as a surrogate end point along with traditional end points, such as disease-free and overall survival in most current trials.
Quality of life measures as a preliminary clinical indicator in patients with primary brain tumors
Surgical Neurology International, 2013
Background: The health-related quality of life (HRQOL) measures serve as valuable indicators of survival in patients with newly diagnosed primary brain tumors (PBTs). HRQOL outcomes may benefit clinical decision-making by individualizing patient treatment and improving communications between the doctor, patient, and families. Exploring the individual items of the European Organization and Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QOL) measures may be predictive of prognosis. Methods: We prospectively collected the validated HRQOL and standard clinical and radiological measures from 48 patients with newly diagnosed PBT. The patients were followed every 3 months over 2 years. No proxies were allowed. Questionnaire responses were compared between two groups: Patients with recurrence and/or death (n = 26) and patients without a recurrence (n = 22). A total of 17 patients succumbed to a tumor-related death. Statistical analysis utilizing nonparametric t-tests and Wilcoxon sign tests assessed QOL responses. Results: Significant group differences were noted in the QOL measures with more negative responses in the recurrence group. EORTC QLQ-C30 questions revealed a poor global HRQOL scale (P < 0.005) and pain interfering with daily activities (P < 0.05). EORTC QLQ-BN20 questions revealed weakness of the legs (P < 0.05), coordination difficulties (P < 0.005), and unsteady gait (P < 0.05). Hospital Anxiety and Depression Scale (HADS) questions reflected a patient who is "slowed down" (P < 0.01) and "frightened" (P < 0.05). Conclusion: Our analysis of longitudinal HRQOL measures may shed light on the prognostic significance of HRQOL measures in patients with newly diagnosed PBT. Further research is warranted to determine which selected individual measures of the EORTC QOL measures may be predictive of a patient's progression-free and overall survival and to test their validity and reliability in clinical trials.
Quality of life and physical limitations in primary brain tumor patients
Quality of Life Research
Objective To correlate quality of life (QoL) and physical limitations in histological proven primary brain tumor patients using a battery of generic, disease-specific and symptom questionnaires. Methods Thirty patients with primary brain tumors were selected from a neuro-oncology outpatient clinic. The FACT-Br Functional Assessment of Cancer Therapy-Brain (specific quality of life questionnaire for patients with brain tumors), SF-36 (generic quality of life questionnaire), HADS (anxiety and depression), and Barthel Index (functionality scale) were answered by the patients at the same interview. Results The Barthel index did not demonstrate correlation with any subscale of the FACT-Br questionnaire. The HADS had a negative correlation with all FACT-Br subscales and its total score. The SF-36 had a significant weak to moderate correlation with the FACT-Br questionnaire. Conclusion Considering that the FACT-Br is a quick specific questionnaire, it can be a valuable and simple option in evaluating QoL in brain tumor patients with good functional capacity.
medRxiv (Cold Spring Harbor Laboratory), 2022
Background: Rehabilitation therapy during hospitalization is effective in improving activities of daily living (ADL) and physical function in patients with brain tumors. However, there are few studies on the effect of rehabilitation therapy on health-related quality of life (HRQOL) in patients with brain tumors. Additionally, the EuroQol-5Dimension-5Level (EQ-5D-5L) index score has not been reported as an outcome. This study aimed to investigate the HRQOL of patients with brain tumors who underwent rehabilitation therapy and investigated the factors affecting the EQ-5D-5L index score from various perspectives, including various brain tumor types, treatment methods, and recurrence. In addition, we examined the relationship between the EQ-5D-5L index score, disease-specific HRQOL scale, and ADL. .
European Journal of Cancer, 2002
Over the last 20 years, the assessment of quality of life (QOL) has become an important endpoint in cancer clinical trials, helping us to understand patient survival and QOL experiences and aiding clinicians in providing the best possible treatment and care, with the least toxicity and ill-effects. In primary brain cancer, these are critical issues. Survival is often limited and treatment difficult to tolerate. In recent years, some authors have questioned the methodological quality of the investigations and the reporting of QOL assessments from randomised controlled trials (RCTs), of cancer patients yet this assessment has never specifically focused on brain cancer. This paper therefore reports a systematic review of the research methodology and QOL assessment reporting in brain cancer patients in RCTs. The search was mainly performed on the following databases: Medline, Cancerlit and the Cochrane Controlled Trials Register. We identified only five RCTs, enrolling a total of 1026 patients. In many of these studies, we had identified methodological limitations which would hinder the interpretation of the results. These included a lack of detailed reporting regarding missing data, use of poorly validated tools, and general limitations regarding the presentation and interpretation of the results. Based on the results of our review, we make recommendations for future investigations to avoid these shortcomings.