About

NIH Neuro-QOL Ability to Participate with Roles and Activities

NIH Neuro-QOL Satisfaction with Ability to Participate in 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 Ability to Participate in Roles and Activities is the ePRO system, and can be configured as a PRO tool that provides a short and reliable assessment for ability for participation 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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Introduction

Ability to participate in social roles and activities is one of the key indicators of the long-term success of treatment or rehabilitation process in various disease conditions that are known to cause various degrees of disabilities (Heinemann, Kisala, Hahn, & Tulsky, 2015). These could be neurological conditions like stroke, spinal trauma or even non-neurological conditions like arthritis.

Ability to participate in social roles and activities, is a sub domain of Neuro QoL, a set of measures developed by NIH for assessing health related quality of life in people suffering from neurological and other health conditions that may have an indirect effect on neurological functioning resulting in the social isolation of the person.

As with any item bank developed by NIH for measuring functioning or disabilities, it is not specific measure for a particular disease condition, but rather a generic measure for use in clinical trials. It can be easily adapted for use in wide range of situations. The primary target of this question bank is to provide the level of social participation and thus assess the progress or regress of neurological functioning and health.

Methods

Ability to participate in social roles and activities is the sub-domain of Neuro QoL and is based on item response theory (IRT). It is a self-reported or proxy reported scale for adults.

This item bank consists of questions that are related to the experience of the person for last 7 days or their feelings at the moment of responding to the question items. Respondent has to choose from 5 options ranging from “Not at all” to “Very much”.

It has 45 items in the long form and 8 questions in the short form. The short form can be completed in a minute or two, whereas, the long form may take up to 4-5 minutes. The surveys can be completed directly on your smartphone through Qolty app

          As per official statement of NIH, CAT is the most precise method. CAT does not contain a fixed number of questions, rather their number and content change according to the responses. Though in some cases when a researcher needs the similar questions-set for all people being tested, pen and paper may be preferred. As it is made to produce best results on the computed platform, its maximum productivity is realized on the Qolty platform.

Applications

This item bank to measure social participation has been created for use in clinical studies, assessing the quality of life-related to disorders that affect the neurological functioning in the adult population. It has been validated, tested for responsiveness, providing the dynamic data, thus helping in better clinical decision making.

This sub domain is meant for use in any clinical condition and is regarded as a good measure of rehabilitation or long-term outcome of treatment in debilitating conditions, be it, spinal trauma (Heinemann et al., 2015), alcohol abuse, sleep disorder, muscular dystrophy (Cella et al., 2012), or even arthritis (Davis et al., 2011).      

Translations

            Neuro QoL has been translated to the wide number of languages. But sub domain ability to participate in social activities and roles has been translated into English, German and Spanish only. It has been calibrated and validated for use in a wide number of neurological and other health disorders in these languages. The short version is also available in Swedish, and translation into Turkish and other languages is in process.

Results and Data analysis

Once the responses of the subject have been registered, Qolty generates the T-score for the subdomain being measured. 50 is the mean score for the population being measured, and 10 is one standard deviation. For abilities to participate in social role and activities, higher score means better.

Figure 1 Neuro QoL-Ability to participate measure for person who has Parkinson’s disease

Figure 2 Neuro QoL Ability to participate in a person suffering from alcohol dependence

Strengths and limitations

Perhaps the biggest strength of this measure is that it can be used to assess the social participation level in a person irrespective of the disorder, be it neurological or non-neurological condition, it is concise, quick to implement, no prior training required, available on various platforms, have the possibility of the even interview over the phone and proxy reporting.

CAT has shown the high level of preciseness, considering that social participation is the indication of long term effects of rehabilitation, integration of this sub domain with Qolty can help to better understand the changes in the social participation over a long duration of time.

Although, it has been widely accepted that ability to participate in social activities is an important indicator of well-being and rehabilitation, but there is lack of single accepted definition. In general, it means at least doing things along with other people, to the highest form of social participation like helping others and contributing to the community (Piškur et al., 2014).

Summary & Key Points

  • Measures health related quality of life and social participation in a person suffering from various neurological and non-neurological conditions, like stroke, epilepsy, spinal trauma, arthritis and much more, with the possibility to adapt and validate in any possible clinical scenario.
  • Freely available for use, quick to implement, with single sub-domain assessment not taking more than a couple of minutes.
  • Available in various formats like CAT, pen & paper, option for an interview, and proxy reporting.
  • CAT has shown the highest accuracy rate, meaning that Qolty app would provide better results than other methods, not to mention the excellent long term data integration of the platform.

References

Cella, D., Lai, J.-S., Nowinski, C. J., Victorson, D., Peterman, A., Miller, D., … Moy, C. (2012). Neuro-QOL Brief measures of health-related quality of life for clinical research in neurology. Neurology, 78(23), 1860–1867.

Davis, A. M., Palaganas, M. P., Badley, E. M., Gladman, D. D., Inman, R. D., & Gignac, M. A. (2011). Measuring participation in people with spondyloarthritis using the social role participation questionnaire. Annals of the Rheumatic Diseases, 70(10), 1765–1769.

Heinemann, A. W., Kisala, P. A., Hahn, E. A., & Tulsky, D. S. (2015). Development and psychometric characteristics of the SCI-QOL Ability to Participate and Satisfaction with Social Roles and Activities item banks and short forms. The Journal of Spinal Cord Medicine, 38(3), 397–408.

Piškur, B., Daniëls, R., Jongmans, M. J., Ketelaar, M., Smeets, R. J., Norton, M., & Beurskens, A. J. (2014). Participation and social participation: are they distinct concepts? Clinical Rehabilitation, 28(3), 211–220.