QOLP-15. LONGITUDINAL PERCEPTION OF PROGNOSIS OF PATIENTS WITH HIGH GRADE GLIOMA COMPARED TO THEIR CAREGIVERS AND CLINICIANS

Abstract BACKGROUND Treatment options and prognosis are limited for patients with high grade glioma (pwHGG), underscoring the importance of patient and caregiver understanding to prioritize goals of care and quality of life (QOL). Although addressed by multiple providers, patients and caregivers may experience discordance in understanding the prognosis. This may be related to patient/caregiver perception, cognitive decline as a result of the tumor and/or treatment, or failure by the clinician to clearly articulate this information under emotional circumstances. AIMS: To evaluate the longitudinal perception of prognosis of patients compared to their caregivers and their providers during the adjuvant treatment of newly diagnosed HGG. METHODS After IRB approval, 16 pwHGG, their caregivers and their providers reported an overall survival estimate at each monthly visit during adjuvant treatment, as part of a larger survey. Options included “weeks,” “weeks to several months,” “several months to years,” “indefinite number of years”, or “I do not wish to answer.” RESULTS Seven of the sixteen patient/caregiver clusters have completed the appropriate duration of the study with the remaining completing in November. The perception of the patient differs from the caregiver at almost each visit. Regardless of the counseling provided by provider, the perception of both tends to change at each visit and can vary from dismal to overtly optimistic. There does not appear to be discrepancy between the neuro-oncology and palliative care provider’s perception of prognosis. CONCLUSION Newly diagnosed pwHGG and caregivers vary in their perception of prognosis, deviating not only from each other but also differing at each visit throughout the course of their illness. The providers’ perception appeared to remain consistent but often varied from that of the patient and caregiver. Providers need to be aware that prognostic understanding appears to fluctuate throughout the course of illness and cannot be clarified via a single discussion.

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Coping with a newly diagnosed high-grade glioma: patient-caregiver dyad effects on quality of life

Journal of Neuro-Oncology ◽

10.1007/s11060-016-2161-6 ◽

2016 ◽

Vol 129 (1) ◽

pp. 155-164 ◽

Cited By ~ 10

Author(s):

K. Baumstarck ◽

T. Leroy ◽

Z. Hamidou ◽

E. Tabouret ◽

P. Farina ◽

...

Keyword(s):

Quality Of Life ◽

High Grade Glioma ◽

High Grade ◽

Newly Diagnosed ◽

Glioma Patient

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Faculty Opinions recommendation of Neurobehavioral status and health-related quality of life in newly diagnosed high-grade glioma patients.

Faculty Opinions – Post-Publication Peer Review of the Biomedical Literature ◽

10.3410/f.718482640.793496843 ◽

2014 ◽

Author(s):

Rakesh Jalali

Keyword(s):

Quality Of Life ◽

High Grade Glioma ◽

High Grade ◽

Newly Diagnosed ◽

Health Related Quality ◽

Related Quality ◽

Health Related

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I-CoPE: A pilot study of structured supportive care delivery to people with newly diagnosed high-grade glioma and their carers

Neuro-Oncology Practice ◽

10.1093/nop/npy010 ◽

2018 ◽

Vol 6 (1) ◽

pp. 61-70 ◽

Cited By ~ 3

Author(s):

Jennifer Philip ◽

Anna Collins ◽

Jane Staker ◽

Michael Murphy

Keyword(s):

Quality Of Life ◽

Pilot Study ◽

Supportive Care ◽

Repeated Measures ◽

Information Needs ◽

Care Delivery ◽

High Grade Glioma ◽

High Grade ◽

Newly Diagnosed

Abstract Background There is limited evidence to guide best approaches to supportive care delivery to patients with high-grade glioma. I-CoPE (Information, Coordination, Preparation and Emotional) is a structured supportive care approach for people with newly diagnosed high-grade glioma and their family carers. Delivered by a cancer care coordinator, I-CoPE consists of (1) staged information, (2) regular screening for needs, (3) communication and coordination, and (4) family carer engagement. This pilot study tested acceptability and preliminary effectiveness of I-CoPE, delivered over 3 transitions in the illness course, for people newly diagnosed with high-grade glioma and their carers. Methods I-CoPE was delivered at the identified transition times (at diagnosis, following the diagnostic hospitalization, following radiotherapy), with associated data collection (enrollment, 2 weeks, 12 weeks). Outcomes of interest included: acceptability/feasibility (primary); quality of life; needs for support; disease-related information needs; and carer preparedness to care (secondary). Descriptive statistics were used to assess acceptability outcomes, while patient and carer outcomes were assessed using repeated measures ANOVA. Results Thirty-two patients (53% male, mean age 60) and 31 carers (42% male) participated. I-CoPE was highly acceptable: 86% of eligible patients enrolled, and of these 88% completed the study. Following I-CoPE patients and carers reported fewer information needs (P < .001), while carers reported fewer unmet supportive care needs (P < .01) and increased preparedness to care (P = .04). Quality of life did not significantly change. Conclusion A model of supportive care delivered based upon illness transitions is feasible, acceptable, and suggests preliminary efficacy in some areas. Formal randomized studies are now required.

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Brain atlas for assessing the impact of tumor location on perioperative quality of life in patients with high-grade glioma: A prospective population-based cohort study

NeuroImage Clinical ◽

10.1016/j.nicl.2019.101658 ◽

2019 ◽

Vol 21 ◽

pp. 101658 ◽

Cited By ~ 6

Author(s):

Lisa Millgård Sagberg ◽

Daniel Høyer Iversen ◽

Even Hovig Fyllingen ◽

Asgeir Store Jakola ◽

Ingerid Reinertsen ◽

...

Keyword(s):

Quality Of Life ◽

Cohort Study ◽

High Grade Glioma ◽

Tumor Location ◽

Population Based ◽

Brain Atlas ◽

High Grade ◽

The Impact

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Facets and determinants of quality of life in patients with recurrent high grade glioma

Journal of Neurology Neurosurgery & Psychiatry ◽

10.1136/jnnp.2004.036186 ◽

2005 ◽

Vol 76 (4) ◽

pp. 562-568 ◽

Cited By ~ 77

Author(s):

A R Giovagnoli

Keyword(s):

Quality Of Life ◽

High Grade Glioma ◽

High Grade

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Health-related quality of life and distress in elderly vs. younger patients with high-grade glioma—results of a multicenter study

Supportive Care in Cancer ◽

10.1007/s00520-020-05354-8 ◽

2020 ◽

Vol 28 (11) ◽

pp. 5165-5175 ◽

Cited By ~ 1

Author(s):

Mirjam Renovanz ◽

Anne-Katrin Hickmann ◽

Minou Nadji-Ohl ◽

Naureen Keric ◽

Elke Weimann ◽

...

Keyword(s):

Quality Of Life ◽

Elderly Patients ◽

High Grade Glioma ◽

High Grade ◽

Health Related Quality ◽

Younger Patients ◽

Patient Reported ◽

Related Quality ◽

Health Related

Abstract Objective Half of all newly diagnosed patients with glioblastoma are > 65 years still with a poor prognosis. Preserving quality of life is of high importance. However, patient reported outcome (PRO) data in this patient group is rare. The aim was to compare health-related quality of life (HRQoL) and distress between elderly and younger patients with high-grade glioma (HGG). Methods We used baseline data of a prospective study where HGG patients were enrolled from 4 hospitals. Distress was measured using the distress thermometer (DT), HRQoL using the European Organization for Research and Treatment of Cancer (EORTC) Quality of Life Core Questionnaire (QLQ-C30) plus brain module (BN20). We compared distress and HRQoL by age (≥ 65 vs. < 65 years), gender, performance score, and time since diagnosis using multivariate linear and logistic regressions. Results A total of n = 93 (30%) out of n = 309 patients were ≥ 65 years (mean 70 years, range 65–86 years). Mean DT score of elderly patients (5.2, SD 2.6) was comparable with younger patients (4.9, SD 2.6). Elderly patients reported significantly lower global health (GHS, mean elderly vs. younger; 50.8 vs. 60.5, p = 0.003), worse physical (56.8 vs. 73.3, p < 0.001) and lower cognitive functioning (51.1 vs. 63.2, p = 0.002), worse fatigue (52.5 vs. 43.5, p = 0.042), and worse motor dysfunction (34.9 vs. 23.6, p = 0.030). KPS and not age was consistently associated with HRQoL. Conclusion Physical functioning was significantly reduced in the elderly compared with younger HGG patients, and at the same time, emotional functioning and DT scores were comparable. KPS shows a greater association with HRQoL than with calendric age in HGG patients reflecting the particular importance for adequate assessment of HRQoL and general condition in elderly patients.

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Neurobehavioral Status and Health-Related Quality of Life in Newly Diagnosed High-Grade Glioma Patients

Journal of Clinical Oncology ◽

10.1200/jco.2001.19.20.4037 ◽

2001 ◽

Vol 19 (20) ◽

pp. 4037-4047 ◽

Cited By ~ 176

Author(s):

Martin Klein ◽

Martin J.B . Taphoorn ◽

Jan J. Heimans ◽

Henk M. van der Ploeg ◽

W. Peter Vandertop ◽

...

Keyword(s):

High Grade Glioma ◽

Extent Of Resection ◽

High Grade ◽

Healthy Controls ◽

Newly Diagnosed ◽

Health Related Quality ◽

Related Quality ◽

Health Related ◽

Nsclc Patients

PURPOSE: To evaluate the health-related quality of life (HRQOL) and cognitive functioning of high-grade glioma patients in the postneurosurgical period. PATIENTS AND METHODS: The HRQOL, as assessed by the Short-Form Health Survey-36, tumor-specific symptoms, and objective and subjective neuropsychologic functioning, of 68 newly diagnosed glioma patients were compared with that of 50 patients with non–small-cell lung cancer (NSCLC) and to age- and sex-matched healthy controls. The association between tumor lateralization, extent of resection, and use of medication, and the HRQOL outcomes was also investigated. RESULTS: The HRQOL of the two patient groups was similar but significantly lower than that of the healthy controls. Glioma patients reported significantly more neurologic symptoms and poorer objective and subjective neuropsychologic functioning than the NSCLC patients. Using healthy controls as the reference group, cognitive impairment assessed at the individual patient level was observed in all glioma patients and 52% of the NSCLC patients. Poor performance on timed tasks in the glioma group could be attributed, in large part, to visual and motor deficits. Tumor lateralization was found to affect neuropsychologic functioning in a predictable manner. The extent of resection was not related significantly to neuropsychologic functioning. Corticosteroid use was associated with better recognition memory, whereas antiepileptic drug use was correlated negatively with working memory capacity. CONCLUSION: The general HRQOL of glioma patients is similar to that of patients with NSCLC. However, they suffer from a number of condition-specific neurologic and neuropsychologic problems that have a significant impact on their daily lives in the postsurgical period, before treatment with radiotherapy.

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Palliative Care in High-Grade Glioma: A Review

Brain Sciences ◽

10.3390/brainsci10100723 ◽

2020 ◽

Vol 10 (10) ◽

pp. 723

Author(s):

Rita C. Crooms ◽

Nathan E. Goldstein ◽

Eli L. Diamond ◽

Barbara G. Vickrey

Keyword(s):

Quality Of Life ◽

Palliative Care ◽

End Of Life ◽

Care Delivery ◽

High Grade Glioma ◽

Functional Independence ◽

High Grade ◽

Care Needs ◽

Palliative Care Needs

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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