Neuro-QOL

Cella, David; Lai, Jin Shei; Nowinski, Cindy J.; Victorson, David; Peterman, Amy H.; Miller, Deborah; Béthoux, François; Heinemann, Allen W.; Rubin, Stanford E.; Cavazos, Jose ́E.; Reder, Anthony T.; Sufit, Robert; Simuni, Tanya; Holmes, Gregory L.; Siderowf, Andrew; Wojna, Valerie; Bode, Rita; McKinney, Natalie; Podrabsky, Tracy; Wortman, Katy; Choi, Seung W.; Gershon, Richard; Rothrock, Nan; Moy, Claudia S.

doi:10.1212/wnl.0b013e318258f744

Cited by 600 publications

(424 citation statements)

References 17 publications

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“…The Quality of Life in Neurological Disorders (Neuro-QOL) measurement system was initially devised for adults but, more recently, a children's version has been proposed. 239 Notably, there is only partial coverage of the key domains proposed by our research in the content of Neuro-QOL, and examination of included items suggests there may be similar problems with face validity identified with other PROMs.…”

Section: Implications For Health Servicesmentioning

confidence: 86%

Informing the NHS Outcomes Framework: evaluating meaningful health outcomes for children with neurodisability using multiple methods including systematic review, qualitative research, Delphi survey and consensus meeting

Morris

Janssens

Allard

et al. 2014

Health Services and Delivery Research

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BackgroundThe identification of suitable outcome measures will improve the evaluation of integrated NHS care for the large number of children affected by neurodisability, and has the potential to encourage the provision of more appropriate and effective health care. This research sought to appraise the potential of patient-reported outcome measures (PROMs) for children and young people with neurodisability.AimThis research aimed (i) to identify key outcomes of health care for children with neurodisability, beyond morbidity and mortality, from the perspectives of children, parents and professionals; (ii) to critically appraise existing generic multidimensional PROMs; and (iii) to examine whether or not the key outcomes might be measured by existing PROMs. We also sought agreement on a definition of neurodisability.MethodsData were gathered in three main ways, (i) a systematic review identified eligible generic multidimensional PROMs and peer-reviewed studies evaluating psychometric performance using English-language questionnaires. Studies were appraised for methodological quality and psychometric performance was appraised using standard criteria. (ii) Focus groups and interviews with children and young people with neurodisability, and separately with parents, sought to identify important outcomes of NHS care, and their feedback on example PROM questionnaires. (iii) An online Delphi survey was conducted with a multidisciplinary sample of health professionals to seek agreement on appropriate NHS outcomes. In addition, we convened a consensus meeting with a small nominal group of young people, parents and professionals; the group sought agreement on a core set of important health outcomes.ResultsFrom the systematic review, we identified 126 papers that reported eligible evidence regarding the psychometric performance of 25 PROMs. Evidence of psychometric robustness was more favourable for a small number of PROMs: KIDSCREEN (generic), DISABKIDS (chronic-generic) and Child Health Utility 9D (preference-based measure). The Pediatric Quality of Life Inventory and KINDL offer both self-report and a proxy report version for a range of age bands, but evidence of their psychometric performance was weaker. Evidence was lacking in one or more respects for all candidate PROMs, in both general populations and those with neurodisability. Proxy reporting was found generally to be poorly correlated with self-report. Focus groups and interviews included 54 children and young people, and 53 parents. The more important health outcomes were felt to be communication, emotional well-being, pain, mobility, independence/self-care, worry/mental health, social activities and sleep. In addition, parents of children with intellectual impairment identified behaviour, toileting and safety as important outcomes. Participants suggested problems with the face validity of example PROM questionnaires for measuring NHS care. In the Delphi survey, 276 clinicians from a wide range of professions contributed to at least one of four rounds. Professionals rated pain, hearing, seeing, sleep, toileting, mobility and communication as key goals for the NHS but also identified treating neurological symptoms as important. Professionals in the Delphi survey and parents working with the research team agreed a proposed definition for neurodisability. The consensus meeting confirmed overlap between the outcomes identified as important by young people, parents and professionals, but not complete agreement.ConclusionsThere was agreement between young people, parents and professionals regarding a core suite of more important health outcomes: communication, emotional well-being, pain, mobility, independence/self-care, worry/mental health, social activities and sleep. In addition, behaviour, toileting and safety were identified as important by parents. This research suggests that it would be appropriate to measure these constructs using PROMs to assess health care. None of the candidate PROMs in the review adequately captures all of the identified constructs, and there is inadequate evidence that candidate PROMs are psychometrically robust for use across children with neurodisability. Further consultation with young people, families and professionals is warranted to support the use of PROMs to measure NHS outcomes. Research to test potential PROMs with different age groups and conditions would be valuable.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

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Section: Implications For Health Servicesmentioning

confidence: 86%

Informing the NHS Outcomes Framework: evaluating meaningful health outcomes for children with neurodisability using multiple methods including systematic review, qualitative research, Delphi survey and consensus meeting

Morris

Janssens

Allard

et al. 2014

Health Services and Delivery Research

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“…Neuro-QOL and the Patient Reported Outcomes Measurement Information System (PROMIS), developed by the NIH, provide valid and reliable tools for QOL assessment in patients with stroke, cancer, and other disorders (26). Neuro-QOL became available for limited (research) use in January 2011 (www.assessmentcenter.net).…”

Section: Outcome Assessmentmentioning

confidence: 99%

Intracerebral Hemorrhage and Delirium Symptoms. Length of Stay, Function, and Quality of Life in a 114-Patient Cohort

Naidech

Beaumont²,

Rosenberg³

et al. 2013

Am J Respir Crit Care Med

100

105

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Rationale: The prognostic significance of delirium symptoms in intensive care unit (ICU) patients with focal neurologic injury is unclear. Objectives: To determine the relationship between delirium symptoms and subsequent functional outcomes and quality of life (QOL) after intracerebral hemorrhage. Methods: We prospectively enrolled 114 patients. Delirium symptoms were routinely assessed twice daily using the Confusion Assessment Method for the ICU by trained nurses. Functional outcomes were recorded with modified Rankin Scale (scored from 0 [no symptoms] to 6 [dead]), and QOL outcomes with Neuro-QOL at 28 days, 3 months, and 12 months. Measurements and Main Results: Thirty-one (27%) patients had delirium symptoms ("ever delirious"), 67 (59%) were never delirious, and the remainder (14%) had persistent coma. Delirium symptoms were nearly always hypoactive, were detected mean 6 days after intracerebral hemorrhage presentation, and were associated with longer ICU length of stay (mean 3.5 d longer in ever vs. never delirious patients; 95% confidence interval, 1.5-8.3; P ¼ 0.004) after correction for age, admit National Institutes of Health (NIH) Stroke Scale, and any benzodiazepine exposure. Delirium symptoms were associated with increased odds of poor outcome at 28 days (odds ratio, 8.7; 95% confidence interval, 1.4-52.5; P ¼ 0.018) after correction for admission NIH Stroke Scale and age, and with worse QOL in the domains of applied cognition-executive function and fatigue after correcting for the NIH Stroke Scale, age, benzodiazepine exposure, and time of follow-up. Conclusions: After focal neurologic injury, delirium symptoms were common despite low rates of infection and sedation exposure, and were predictive of subsequent worse functional outcomes and lower QOL. Keywords: delirium; outcomes; quality of lifeThe symptoms of delirium, a potential consequence of multiple clinical disease states and physiologic aberrations, include a shift in baseline mental status, inattention, and disorganized thinking or altered level of consciousness. Although nonspecific, this syndrome is an independent predictor of higher mortality (1), longer length of stay (LOS), higher cost of care, and worse long-term cognitive outcomes in medical, surgical, burn, and trauma intensive care unit (ICU) patients (2). There are few such data, however, in ICU patients with focal neurologic injury without systemic illness.Risk factors for delirium symptoms are typically global (infection [3] and intravenous sedation, particularly benzodiazepines [BZDs]) (4, 5) as opposed to focal lesions (e.g., hematoma). Most mechanically ventilated patients are delirious during hospitalization (1), potentially because of the sedation regimen (e.g., BZD infusion), but sedation is typically minimized in neurologically injured patients to permit repeated neurologic assessment that may lead to an acute intervention (6).Screening tests for delirium have been recently validated in neurologically ill patients (7-9), including ischemic stroke (7, 10) and intracerebra...

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“…4 With National Institute of Neurological Disorders and Stroke funding to address these limitations, Neuro-QOL was developed as a clinically robust and validated patient-reported HRQOL assessment tool for adults and children with neurologic disorders. 5,6 We sought to (1) compare Neuro-QOL assessments with traditional measures using the mRS and BI, and (2) identify predictors of impaired HRQOL after TIA and MIS. …”

mentioning

confidence: 99%

Quality of life in patients with TIA and minor ischemic stroke

et al. 2015

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Objective: We investigated health-related quality of life (HRQOL) in patients with TIA and minor ischemic stroke (MIS) using Neuro-QOL, a validated, patient-reported outcome measurement system.Methods: Consecutive patients with TIA or MIS who had (1) modified Rankin Scale (mRS) score of 0 or 1 at baseline, (2) initial NIH Stroke Scale score of #5, (3) no acute reperfusion treatment, and (4) 3-month follow-up, were recruited. Recurrent stroke, disability by mRS and Barthel Index, and Neuro-QOL scores in 5 prespecified domains were prospectively recorded. We assessed the proportion of patients with impaired HRQOL, defined as T scores more than 0.5 SD worse than the general population average, and identified predictors of impaired HRQOL using logistic regression.Results: Among 332 patients who met study criteria (mean age 65.7 years, 52.4% male), 47 (14.2%) had recurrent stroke within 90 days and 41 (12.3%) were disabled (mRS .1 or Barthel Index ,95) at 3 months. Any HRQOL impairment was noted in 119 patients (35.8%). In multivariate analysis, age (adjusted odds ratio [OR] 1.02, 95% confidence interval [CI] 1.01-1.04), initial NIH Stroke Scale score (adjusted OR 1.39, 95% CI 1.17-1.64), recurrent stroke (adjusted OR 2.10, 95% CI 1.06-4.13), and proxy reporting (adjusted OR 3.94, 95% CI 1.54-10.10) were independent predictors of impaired HRQOL at 3 months.Conclusions: Impairment in HRQOL is common at 3 months after MIS and TIA. Predictors of impaired HRQOL include age, index stroke severity, and recurrent stroke. Future studies should include HRQOL measures in outcome assessment, as these may be more sensitive to mild deficits than traditional disability scales. Neurology ® 2015;85:1957-1963 GLOSSARY BI 5 Barthel Index; CI 5 confidence interval; DWI 5 diffusion-weighted imaging; HRQOL 5 health-related quality of life; MIS 5 minor ischemic stroke; mRS 5 modified Rankin Scale; NIHSS 5 NIH Stroke Scale; OR 5 odds ratio.Patients with TIA and minor ischemic stroke (MIS) account for the majority of stroke patients who present for emergency care in the United States.1 Mild symptoms on presentation is a common reason for exclusion from IV tissue plasminogen activator administration.2 Acute ischemic stroke leads to decreases in health-related quality of life (HRQOL), even among those who have no or minimal poststroke disability.3 Although the outcomes of most patients with minor symptoms, defined by a low NIH Stroke Scale (NIHSS) score, are favorable, approximately 25% of such patients become disabled. 2Stroke outcomes traditionally have utilized disability scales of functional status, which often fail to represent the full effect of disease and treatment. The modified Rankin Scale (mRS) and Barthel Index (BI) are the most frequently used tools to measure disability and handicap after stroke. 4 With National Institute of Neurological Disorders and Stroke funding to address these limitations, Neuro-QOL was developed as a clinically robust and validated patient-reported HRQOL assessment tool for adults and children wit...

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Neuro-QOL

Cited by 600 publications

References 17 publications

Informing the NHS Outcomes Framework: evaluating meaningful health outcomes for children with neurodisability using multiple methods including systematic review, qualitative research, Delphi survey and consensus meeting

Informing the NHS Outcomes Framework: evaluating meaningful health outcomes for children with neurodisability using multiple methods including systematic review, qualitative research, Delphi survey and consensus meeting

Intracerebral Hemorrhage and Delirium Symptoms. Length of Stay, Function, and Quality of Life in a 114-Patient Cohort

Quality of life in patients with TIA and minor ischemic stroke

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