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About

NIH Neuro-QOL Satisfaction with Roles and Activities

NIH Neuro-QOL Satisfaction with Roles and Activities 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 social satisfaction with only the most informative items for an individual patient from an item bank based on the prior answers given by the patient.

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The satisfaction with social roles and activities instrument deals with assessing the social well-being of people with neurologic conditions by assessing their feelings, emotions, and their optimism for the future. Satisfaction with social roles and activities has always been a major goal for people with neurologic conditions but one that has always been hard to measure. In this instrument, it is measured in terms of the ability to cope with daily life, socialize with friends and family as well as the satisfaction of accomplishing some desired goals or the disappointment from the inability to achieve the same. Like the other Neuro-QoL (Quality of Life in Neurological Disorders) instruments, the measures in this domain are not disease specific but can be used across a range of neurological conditions.

Social health is defined in the PROMIS (Patient-Reported Outcome Measurement Information System) Social Health framework as comprising of social relationships (e.g., communication), social function (e.g., participation in the society) and the size, reciprocity, and quality of one’s social network (Gershon et al., 2012). This Neuro-QoL measure seeks to assess the well-being of an individual with a neurologic condition in terms of their social activities and relationships. This includes satisfaction with one’s normal activities and social roles such as parental & marital responsibilities, social activities with friends, leisure activities and work-related responsibilities.A social health working group working under the PROMIS Social Health framework was tasked with constructing the item pools and defining the social health framework to be used in assessing the salient aspects of social health in people with neurologic conditions (Gershon et al., 2012). The key constructs in this domain were identified through focus groups, revised through cognitive interviews and calibrated & evaluated through item response theory (IRT) and confirmatory factor analysis. The validation was carried out in diverse samples of Spanish and English subjects resulting into culturally-appropriate and psychometrically-sound measures (McDowell I, 2006).

The satisfaction with social roles and activities instrument consists of 45 items and a short form of 8 items. The measures are intended to be self-reported but can be completed by a proxy when necessary. The fixed-length short form comprises of 8 items that have been selected from the candidate items based on their clinical reference, similarity to the other item banks and wording. The short form is ideal in cases where the CAT (Computer Adaptive Test) administration is impractical. The scales in this instrument range from “not at all” to “very much.”This instrument can be administered in a range of adult neurological conditions such as epilepsy, stroke, multiple sclerosis, Huntington’s disease, Parkinson’s disease, amyotrophic lateral sclerosis (ALS), spinal cord injury, military deployment-related traumatic brain injury etc., to assess the satisfaction with social roles and activities in such persons thereby serving as an important indicator of their overall social well-being.

With this instrument, clinicians can now access the social participation of their patients. Evaluation of this aspect of social well-being is important in clinical services enabling the clinicians to design effective interventions.Satisfaction with social roles and activities is available in German as well as in Spanish. Translation into Swedish is in progress.A graphical representation of some of the statistical values in this instrument.Test/Retest Reliability

The instrument demonstrated excellent test-retest reliability. Intra class coefficient (ICC) = 0.77

Standard Error of Measurement (SEM)

The mean SEM of the full satisfaction with social roles and activities instrument is 0.09 while the short form has a SEM mean value of 0.16.

Floor/Ceiling Effects

The instrument has minimum floor and ceiling effects. The minimal effects are demonstrated in the short form where 0.3% of the respondents were at the floor when 5.2% were at the ceiling.

Minimal Detectable Change (MDC)

The MDC (calculated from SEM) of the full item bank is 0.25, while that of the short form is 0.44.

Validity statistics

Face validity

The instrument demonstrated strong face validity from the content generated from clinicians, focus groups, and interviews with patients with neurologic conditions.

Criterion validity

The instrument demonstrated adequate concurrent validity. Pearson correlation coefficient (r) =0.65)

Strengths

The satisfaction with social roles and activities measures exhibit excellent psychometric properties and are ideal for research and clinical applications.

The satisfaction with social roles and activities, like the other Neuro-QoL measures, are publicly available for research, educational purpose and clinical practice.

Limitations

Further studies are required to provide more information on the interpretability and the sensitivity to change of the instrument.

There are still some questions with regards to how the data collected by this instrument can be used to improve the quality of care.

  • This instrument measures the behaviors, feelings, and symptoms that have been listed as important in people with neurologic conditions.
  • The instrument uses self-reported measures in-line with the nationwide trend in health care that seeks to involve patients in their health care. Clinicians, researchers, and health organizations have embraced PRO measurement instruments in clinical care.
  • This instrument is a NINDS (National Institute of Neurological Disorders and Stroke) funded initiative. NINDS has been at the fore front of developing instruments for use in patients with stroke, epilepsy and other neurologic conditions through the Neuro-Qol project.
  • The measures in this instrument can be administered via short forms or through computer adaptive tests.
  • The Satisfaction with social roles and activities measures are compatible with and complement other Neuro-Qol and PROMIS family of measures.

Gershon et al. (2012). Neuro-QOL: quality of life item banks for adults with neurological disorders: item development and calibrations based upon clinical and general population testing. Quality of Life Research, 21(3), 476-486.

Quatrano L, Cruz T. Future of outcomes measurement: impact on research in medical rehabilitation and neurologic populations. Arch Phys Med Rehabil 2011;92(10 Suppl):S7–11.

Hahn EA, DeWalt DA, Bode RK, Garcia SF, DeVellis RF, Correia H, et al. New English and Spanish social health measures will facilitate evaluating health determinants. Health Psychol 2014;33(5):490–9.

McDowell I. Measuring health: a guide to rating scales and questionnaires. Oxford: Oxford Univ Pr; 2006.