NIH Neuro-QOL Emotional & Behavioral Dyscontrol
NIH Neuro-QOL Emotional & Behavioral Dyscontrol is an electronic standard assessment patient reported subjective outcomes. The electronic delivery is often beneficial compared to paper assessments as they reduce data entry errors and increase enrollment. Qolty Neuro-QOL Emotional & Behavioral Dyscontrol is the ePRO system, and can be configured as a PRO tool that provides a short and reliable assessment for emotional lability with only the most informative items for an individual patient from an item bank based on the prior answers given by the patient.
Dyscontrol is a term used in medicine to refer to a response that does not fall within the conventionally accepted range or that is poorly modulated. While neurologic diseases produce stable or progressive disabilities, they have also been associated with emotional and behavioural dyscontrol. Some of the neurological diseases with reported emotional and behavioural dyscontrol (EBD) include stroke, amyotrophic lateral sclerosis (ALS), multiple sclerosis (MS), Parkinson’s disease (PD) and epilepsy. Possible manifestations of EBD include aggression towards others, angry outbursts and restlessness. Such variations can occur in seconds or last for minutes or hours. A measurement system, Neuro-QoL, (Quality of Life in Neurological Disorders) was developed to monitor and assess the different life aspects of people with such neurologic conditions. This patient reported outcome (PRO) standardized measurement system is validated and based on item response theory (IRT).
The EBD instrument measures include item banks that can be administered as fixed length forms or as computer adaptive tests (CAT). The measures are intended to be self-reported but an interviewer or a proxy can be used in cases of severe disease burden or in other unique circumstances. There are 18 item, self-report item banks in this instrument.
The instrument measures were identified through several sources including two separate phases of expert interviews, an extensive literature review and focus groups with patients and caregivers. The identified scales then underwent IRT calibration and subsequent validation thus enabling reliable and accurate assessment of EBD in persons with neurological conditions. The end result was an 18 item measure that covers all the important aspects of emotional and behavioural dyscontrol for patients with neurological disorders. Some of the aspects covered in this measure include restlessness, impulsivity, stubbornness, anger, emotionality, temper, irritability, impatience and violence towards others. The scales vary from normal, moderate and severe.
The 8-item EBD short form was created after reviewing the IRT calibration statistics of the items and ranking them depending on their information function (amount of information provided across a given range). The EBD short form was also ideal in detecting the responsiveness of a given measure over time.
The instrument is useful in evaluating the patient perspective in clinical practice and during clinical trials, hence serving as an important addition to other observer rated and caregiver-reported scales.
Interventions that seek to improve the emotional and behavioural traits of a patient suffering from a particular neurological condition can be evaluated by this instrument; this instrument is particularly handy in detecting the responsiveness of the individual to the treatment over time.
The EBD measurement instrument is available in English, German and Spanish. Translation into Turkish is in progress.
Results and Data analysis
A graphical comaprison of the cronbach’s alpha and test-retest interclass correlations (ICC) statistics across the conditions is found below.
The blue bars represent the cronbach’s alpha while the brown bars represent the ICC values.
Across the five conditions, the cronbach’s alpha values were higher than the ICC values with epilepsy having the highest scores in both statistics. Stroke had the lowest cronbach’s alpha values as MS scored the lowest ICC values.
The vision scores are automatically generated in LogMAR, the worst possible LogMAR score is 1.6, while the best score possible on this test is -0.3. In the sample data score is 0.1 LogMAR, that is equal to Snellen 20/25.
The intensity of pain is measured on the scale of 0-10, with 0 representing no pain, and 10 representing the “worst imaginable pain.” It is a self-reported scale.
|Disease condition||Cronbach’s alpha|
The 7-day test-retest reliability statistics across the disease conditions were as shown below.
|Disease condition||Intra class coefficient (ICC)|
Association of the domains as determined by the Pearson correlation coefficient (r) was as follows:
|Disease condition||Pearson correlation coefficient (r)|
|Stroke-related quality of life||-0.54|
|Emotional well-being in MS||-0.51|
|Emotional well-being in PD||0.49|
|Emotional well-being in Epilepsy||-0.54|
Across the disease conditions, the instrument demonstrated considerable responsiveness to detect changes in emotional well-being (F=4.8) over a 5-7 months period across all global ratings of change indicators.
In individual conditions, the instrument was responsive to detect changes in emotional well-being in MS (F=3.2) and epilepsy (F=3.1).
Strengths and limitations
The instrument is responsive to detect changes in emotional well-being over time.
Items in this instrument can be summed to produce a total score since the IRT and confirmatory factor analysis employed showed that the instrument scale is sufficiently unidimensional.
The measures are respondent ready and are readily available for clinical practice, educational purposes, and individual research.
The measures can be administered alongside other measures that assess other aspects of health, e.g., NIH Toolbox.
Ease of administration- pen and paper (short forms), via an interviewer, or through the Qolty app.
The EBD instrument is not applicable to patients with frontal lobe impairments since such patients have limited ability to report on their emotions and behavior.
Summary & Key Points
Emotional and behavioral dyscontrol is common among patients suffering from neurologic conditions. This presents substantial challenges in community participation and has an impact on the quality of life of such individuals. Some of the most functionally disruptive and problematic behaviors may include violence towards others, being restless, short tempered and irritable. Proper management of such requires an understanding of not only their epidemiology and phenomenology but also of their clinical evaluation.
The EBD instrument is a National Institute of Neurological Disorders and Stroke (NINDS) funded project as part of the larger Neuro-QoL study. It is a self-report comprehensive set of HRQL (health related quality of life) measures that cover all the important emotional and behavioral aspects of individuals with neurological disorders. This instrument is key in advancing our knowledge of the impact of emotional and behavioral dyscontrol in patients with neurological disorders and help understand the comparative effectiveness of behavioral, psychological and pharmacologic interventions.
Victorson D, Peterman A, Bode R, Buono S, Mueller A, et al. (2015). Development and Clinical Validation of a New Item Bank and Short Form of Emotional and Behavioral Dyscontrol for Major Neurological Disorders: Results from the Neuro-QOL Study. J Neurol Disord Stroke 3(2): 1098.
Arciniegas DB, Zasler ND, Vanderploeg RD, et al. Management of adults with traumatic brain injury. Washington, DC: American Psychiatric Publishing, Inc; 2013.