Health Related Quality of Life in Adult Low and High-Grade Glioma Patients Using the National Institutes of Health Patient Reported Outcomes Measurement Information System (PROMIS) and Neuro-QOL Assessments

Gabel, Nicolette; Altshuler, David; Brezzell, Amanda; Briceño, Emily M.; Boileau, Nicholas R.; Miklja, Zachary; Kluin, Karen J.; Ferguson, Thomas; McMurray, Kaitlin; Wang, Lin; Smith, Sean R.; Carlozzi, Noelle E.; Hervey-Jumper, Shawn L.

doi:10.3389/fneur.2019.00212

Cited by 40 publications

(47 citation statements)

References 31 publications

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“…PROMIS was developed for the general population with multiple chronic health conditions and has been used to measure common cancer symptoms in routine oncology outpatient care 87. A recent study used the item banks PROMIS and The Quality of Life in Neurological Disorders (Neuro-QOL) to evaluate low- and high-grade glioma patients' perspective on functional domain affecting HRQoL 88…”

Section: Discussionmentioning

confidence: 99%

<p>Moving from clinician-defined to patient-reported outcome measures for survivors of high-grade glioma</p>

Rosenlund¹,

Degsell²,

Jakola³

2019

PROM

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BackgroundPersons with high-grade glioma face both neurological and cancer-related symptoms from the tumor itself and its treatment affecting their daily lives. Survival alone is not an adequate outcome, the quality of the survivorship experience needs to be regarded with equal importance. Patient-reported outcome (PRO) measures can be used to evaluate treatment effects and symptom management interventions.PurposeThe aim of this review was to identify the use, challenges, and potential of PRO measures in survivors of high-grade glioma.MethodsA narrative expert opinion review was performed on the subject. In addition to our own experiences we searched PubMed, Cumulative Index to Nursing and Allied Health Literature, the Cochrane Library, and PsycINFO for brain tumor-specific PRO measures used in the population of adult patients with high-grade glioma, both original articles and reviews were included.ResultsThere are several PRO measures that have been validated for patients with primary brain tumors including high-grade glioma. PRO measures are used both in clinical trials to evaluate the effect of treatment on health-related quality of life, and in daily clinical practice for holistic needs assessment and symptom management. Common PRO measures used for patients with high-grade glioma are European Organization for Research and Treatment of Cancer general instrument for patients with cancer together with brain tumor module, Functional Assessment of Cancer Therapy-Brain, and MD Anderson Symptom Inventory for Brain Tumor. Neurologic and cognitive disorders often occur in patients with high-grade glioma, which affects patients’ ability to self-report over time, making it more challenging in this population. PRO as a primary outcome seems underutilized.ConclusionFor clinical research, PRO measures need to be used together with other clinical outcome measures rather than replacing traditional outcome measures. Moving to more use of PRO measures in survivorship care has potential to improve patient-caregiver-healthcare team communication, symptom management, and quality of care. Implementing PROs in survivorship care should also involve caregivers and a response based on the results.

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Section: Discussionmentioning

confidence: 99%

<p>Moving from clinician-defined to patient-reported outcome measures for survivors of high-grade glioma</p>

Rosenlund¹,

Degsell²,

Jakola³

2019

PROM

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“…Indeed, deficits that affect functional status, such as aphasia, vision loss, and motor deficits, appear in nearly half of patients [ 21 ]. In a retrospective study of 544 functionally independent patients undergoing resection of glioblastoma, 56% had lost functional independence by 10 months after surgery, increasing to 70% by 18 months [ 22 ].…”

Section: Approachmentioning

confidence: 99%

“…Taken together, these factors result in decreased health-related quality of life (HRQOL), an important patient-related outcome measure in brain tumor research [ 21 ]. Patients with HGG have lower scores than the general population both in terms of overall quality of life (76.5 vs 85.9 on the FACT-G scale in a sample of 116 Australian patients) and with respect to physical (20.85 vs 25.1), functional (15.6 vs 20.3), and emotional (16.8 vs 21.2) domains [ 25 ].…”

Section: Approachmentioning

confidence: 99%

“…Patients with HGG have lower scores than the general population both in terms of overall quality of life (76.5 vs 85.9 on the FACT-G scale in a sample of 116 Australian patients) and with respect to physical (20.85 vs 25.1), functional (15.6 vs 20.3), and emotional (16.8 vs 21.2) domains [ 25 ]. Its significance is underscored by findings from a study of 79 patients with glioma (both low- and high-grade) that 79% of patients with HGG prioritized quality of life over survival when making medical decisions [ 21 ].…”

Section: Approachmentioning

confidence: 99%

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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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“…Raw PROMIS totals were subsequently standardized to the US population with a mean of 50 and standard deviation of 10, thus generating converted T scores (henceforth referred to as PROMIS scores) [53]. Lower PROMIS scores indicate worse physical function, and a PROMIS score <40 (1 standard deviation below the population mean) has been used previously in studies of patients with cancer to identify impaired physical function [54,55].…”

Section: Study Measures Of Interestmentioning

confidence: 99%

Driving Distance and Patient-Reported Outcomes in Hematopoietic Cell Transplantation Survivors

Banerjee

Majhail

et al. 2020

Biology of Blood and Marrow Transplantation

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Long driving distances to transplantation centers may impede access to care for hematopoietic cell transplantation (HCT) survivors. As a secondary analysis from the multicenter INSPIRE study (NCT01602211), we examined baseline data from relapse-free HCT adult survivors (2 to 10 years after allogeneic or autologous HCT) to investigate the association between driving distances and patient-reported outcome (PRO) measures of distress and physical function. We analyzed predictors of elevated distress and impaired physical function using logistic regression models that operationalized driving distance first as a continuous variable and separately as a dichotomous variable (<100 versus 100+ miles). Of 1136 patients available for analysis from 6 US centers, median driving distance was 82 miles and 44% resided 100+ miles away from their HCT centers. Elevated distress was reported by 32% of patients, impaired physical function by 19%, and both by 12%. Driving distance, whether operationalized as a continuous or dichotomous variable, had no impact on distress or physical function in linear regression modeling (95% confidence interval, 1.00 to 1.00, for both PROs with driving distance as a continuous variable). In contrast, chronic graft-versus-host-disease, lower income, and lack of Internet access independently predicted both elevated distress and impaired physical function. In summary, we found no impact of driving distance on distress and physical function among HCT survivors. Our results have implications for how long-term follow-up care is delivered after HCT, with regard to the negligible impact of driving distances on PROs and also the risk of a "digital divide" worsening outcomes among HCT survivors without Internet access.

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Health Related Quality of Life in Adult Low and High-Grade Glioma Patients Using the National Institutes of Health Patient Reported Outcomes Measurement Information System (PROMIS) and Neuro-QOL Assessments

Cited by 40 publications

References 31 publications

<p>Moving from clinician-defined to patient-reported outcome measures for survivors of high-grade glioma</p>

<p>Moving from clinician-defined to patient-reported outcome measures for survivors of high-grade glioma</p>

Palliative Care in High-Grade Glioma: A Review

Driving Distance and Patient-Reported Outcomes in Hematopoietic Cell Transplantation Survivors

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