Screening for symptom burden and supportive needs of patients with glioblastoma and brain metastases and their caregivers in relation to their use of specialized palliative care

Seekatz, Bettina; Lukasczik, Matthias; Löhr, Mario; Ehrmann, Katja; Schüler, Michael; Keßler, Almuth F.; Neuderth, Silke; Ernestus, Ralf‐Ingo; Oorschot, Birgitt van

doi:10.1007/s00520-017-3687-7

Cited by 26 publications

(27 citation statements)

References 37 publications

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“…In seven studies describing symptoms in the treatment phase, symptoms were registered according to the CTCAE (Common Terminology Criteria for Adverse Events), varying from registering all grades, to only registering grade 3 and 4 [25, 28, 31–35]. In four studies data were collected by means of validated PROMs including symptoms: the EORTC module for brain cancer patients (EORTC QLQ-BN20) [27], the ESAS-r (ESAS revised) [30], the Hospital Anxiety and Depression Scale (HADS) [26, 36], the Fatigue Severity Scale (FSS) [36], and the Epworth Sleepiness Scale (ESS) [36]. Telephone interviews with patients were performed in the study of Sizoo, including 58 patients, in addition to data that were obtained from the medical records [37].…”

Section: Resultsmentioning

confidence: 99%

Prevalence of symptoms in glioma patients throughout the disease trajectory: a systematic review

et al. 2018

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BackgroundGlioma patients suffer from a wide range of symptoms which influence quality of life negatively. The aim of this review is to give an overview of symptoms most prevalent in glioma patients throughout the total disease trajectory, to be used as a basis for the development of a specific glioma Patient Reported Outcome Measure (PROM) for early assessment and monitoring of symptoms in glioma patients.MethodsA systematic review focused on symptom prevalence in glioma patients in different phases of disease and treatment was performed in MEDLINE, CINAHL and EMBASE according to PRISMA recommendations. We calculated weighted means for prevalence rates per symptom.ResultsThe search identified 2.074 unique papers, of which 32 were included in this review. In total 25 symptoms were identified. The ten most prevalent symptoms were: seizures (37%), cognitive deficits (36%), drowsiness (35%), dysphagia (30%), headache (27%), confusion (27%), aphasia (24%), motor deficits (21%), fatigue (20%) and dyspnea (20%).ConclusionsEight out of ten of the most prevalent symptoms in glioma patients are related to the central nervous system and therefore specific for glioma. Our findings emphasize the importance of tailored symptom care for glioma patients and may aid in the development of specific PROMs for glioma patients in different phases of the disease.Electronic supplementary materialThe online version of this article (10.1007/s11060-018-03015-9) contains supplementary material, which is available to authorized users.

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Section: Resultsmentioning

confidence: 99%

Prevalence of symptoms in glioma patients throughout the disease trajectory: a systematic review

et al. 2018

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“…When patients are on chemotherapy, neuro-oncologists should take into account that mostly caregivers organize the family life, take care of the patients and are in charge when patients suffer from side effects. In order to relieve caregivers, early integration of palliative care, outpatient services, social services and interdisciplinary treatment (during ongoing tumor-specific therapies) are required ( 44 – 47 ).…”

Section: Discussionmentioning

confidence: 99%

Supportive Care Needs in Glioma Patients and Their Caregivers in Clinical Practice: Results of a Multicenter Cross-Sectional Study

et al. 2018

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Objective: Supportive care needs in glioma patients often remain unrecognized, and optimization in assessment is required. First, we aimed at assessing the support needed using a simple structured questionnaire. Second, we investigated the psychosocial burden and support requested from caregivers.Methods: Patients were assessed at three centers during their outpatient visits. They completed the Distress Thermometer (DT; score ≥ 6 indicated significant burden in brain tumor patients), the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ)-C30+BN20, and the Patients' Perspective Questionnaire (PPQ) that assessed psychosocial distress as well as support requested and received by patients for specific domains (e.g., family, doctor, and mobile care). In each subgroup, patients' caregivers were assessed simultaneously by a questionnaire developed for the study. Multivariate backward logistic regressions were performed for investigating predictors of patients' request for support.Results: Assessments were conducted for 232 patients. Most patients (82%) had a high-grade glioma and a mean age of 52 years (range 20–87). The male to female ratio was 1.25:1. According to the PPQ results, 38% (87) of the patients felt depressed; 44% (103), anxious; and 39% (91), tense/nervous. Desired support was highest from doctors (59%) and psychologists (19%). A general request for support was associated with lower global health status (p = 0.03, odds ratio (OR) = 0.96, 95% CI: 0.92–0.99) according to EORTC QLQ-C30. Most of the assessed caregivers (n = 96) were life partners (64%; n = 61) who experienced higher distress than the corresponding patients (caregivers: 6.5 ± 2.5 vs. patients: 5.3 ± 2.4). When patients were on chemotherapy, caregivers indicated DT ≥ 6 significantly more frequently than patients themselves (p = 0.02).Conclusion: Our data showed that glioma patients and their caregivers were both highly burdened. The PPQ allowed us to evaluate the psychosocial support requested and perceived by patients, detect supportive care needs, and provide information at a glance. Patients in poorer clinical condition are at risk of having unmet needs. The caregivers' burden and unmet needs are not congruent with the patients' need for support. In particular, caregivers of patients on chemotherapy were more highly burdened than patients themselves.

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“…Specific indications for specialty palliative care in HGG are less clearly defined [ 13 ]. Few studies have been published specifically addressing the role of specialty palliative care in this unique population, and no randomized, controlled trials have yet been conducted [ 60 , 72 ]. In one observational study of 50 patients with glioblastoma admitted to a tertiary hospital in Australia who had contact with specialty palliative care during that admission, the most common reason for palliative care consultation was “complex discharge planning” (78%), followed by request from a community palliative care service (40%) or symptom management (28%) [ 72 ].…”

Section: Approachmentioning

confidence: 99%

“…These findings are consistent with another qualitative study in which HGG patients reported feeling that health care professionals were not open to talking about the future and were uncomfortable talking about palliative care, which the patients felt was a barrier in their relationships with those providers [ 62 ]. In an observational study of 79 patients with glioblastoma (54 patients; 68%) or brain metastases (25 patients; 32%) who were offered palliative care consultation within 2 months of diagnosis (or diagnosis of relapse), 38% opted to pursue the consultation [ 60 ]. Educating providers about appropriate ways to introduce palliative care may help to allay patient fears, and focusing on primary palliative care interventions or integrated models of care may be optimal in reducing appointment burden.…”

Section: Approachmentioning

confidence: 99%

Palliative Care in High-Grade Glioma: A Review

et al. 2020

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High-grade glioma (HGG) is characterized by debilitating neurologic symptoms and poor prognosis. Some of the suffering this disease engenders may be ameliorated through palliative care, which improves quality of life for seriously ill patients by optimizing symptom management and psychosocial support, which can be delivered concurrently with cancer-directed treatments. In this article, we review palliative care needs associated with HGG and identify opportunities for primary and specialty palliative care interventions. Patients with HGG and their caregivers experience high levels of distress due to physical, emotional, and cognitive symptoms that negatively impact quality of life and functional independence, all in the context of limited life expectancy. However, patients typically have limited contact with specialty palliative care until the end of life, and there is no established model for ensuring their palliative care needs are met throughout the disease course. We identify low rates of advance care planning, misconceptions about palliative care being synonymous with end-of-life care, and the unique neurologic needs of this patient population as some of the potential barriers to increased palliative interventions. Further research is needed to define the optimal roles of neuro-oncologists and palliative care specialists in the management of this illness and to establish appropriate timing and models for palliative care delivery.

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Screening for symptom burden and supportive needs of patients with glioblastoma and brain metastases and their caregivers in relation to their use of specialized palliative care

Cited by 26 publications

References 37 publications

Prevalence of symptoms in glioma patients throughout the disease trajectory: a systematic review

Prevalence of symptoms in glioma patients throughout the disease trajectory: a systematic review

Supportive Care Needs in Glioma Patients and Their Caregivers in Clinical Practice: Results of a Multicenter Cross-Sectional Study

Palliative Care in High-Grade Glioma: A Review

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