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Standard onboarding for SCI-QOL domain modules.
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Spinal cord injury (SCI) does not affect a large population when compared with many other debilitating disorders. But it is a severe condition affecting almost every physical function of the body, resulting in psycho-emotional disorders. Moreover, it is a problem of young age, meaning that it poses a unique challenge for rehabilitation, as most of the people affected by SCI have a long life ahead.
Most ordinary people associate SCI with a walking disability. In SCI weakness of the upper part of the body is also common, it affects sexual function, bowel and bladder functioning, affects breathing, body temperature, and the person is more susceptible to infectious diseases. The amount of disability in SCI is dependent on the level of injury to the spinal cord (Injury at the cervical level would result in more significant impairment of body functions).
SCI is a sudden event in life, leading to many psychological problems. The person suffering from SCI experiences emotional distress, financial losses, inability to work and participate in social activities. As with any chronic disability, depression is often found with SCI. Since it is a problem of young age, it is also characterized by resilience, adjustment to the issues, and improvement in the specific areas of life over time (Brodwin, Siu, Howard, & Brodwin, 2009).
Considering the nature of SCI, many generic scales used to measure the health-related quality of life did not do well in SCI because of many irrelevant questions, and the need for more specific and comprehensive measures was needed. SCI-QOL (Spinal cord injury- Quality of life) measurement system was developed to address this shortcoming.
It is a self-reported question bank used to measure every aspect of the patients affected by spinal cord injury. This collection of questionnaires assesses how the SCI has affected the physical, emotional, and social well-being of a person living with SCI. Since SCI results in life-long disability in young individuals, such kind of tool is used to monitor the disease-related changes in quality of life over time.
It can be used in a clinical setting to assess the severity of SCI and its effect on the quality of life. In clinical research settings, it can be used to determine the acute effects of SCI, document changes in quality of life as the person recovers from injury.
It can also help to set the long-term targets for a rehabilitation program, and policymakers.
Firstly, it is the only tool that has been explicitly designed for SCI. It is unique in comprehensiveness, covering almost every aspect of life affected by SCI. The bladder function item bank is offered by SCI-QOL exclusively. The SCI-QOL measurement system is detail-oriented and yet compact, as many irrelevant questions have been removed. Further, the CAT algorithm has been adapted according to SCI. Thus, it is highly recommended to use this tool in SCI.
The measures employed in the NIH Toolbox make use of several advanced approaches in scoring, item development, and test construction. An example of those approaches includes Computer Adaptive Testing (CAT) and Item Response Theory (IRT).
IRT allows tests to be precise, brief but still valid. Through this procedure, items are calibrated into sets along with a continuum that comprises the full scope of the construct to be measured. It is this calibration that enables CAT. With CAT, users can administer unique, short tests to every participant with reliability as it enables immediate feedback and frequent assessments with precise evaluation at the individual level and with minimal burden to the subject. CAT is specialized computer-based testing that facilitates short tests to be carried out with scores that can be equivalent to longer, fixed-length assessments.
SCI QOL measurement system is divided into four domains namely physical-medical, physical functioning, emotional, and social health. These four domains are further divided into 22 subdomains; 19 consist of adaptive computer tests (CAT) and three are fixed length measures.
These are calibrated question banks, where initially a large number of questions were identified, then during the calibration process, irrelevant items were deleted (Tulsky et al., 2015).
SD1-Bowel management difficulties
Measures impact of SCI on bowel inconsistency and other bowel-related problems.
SD2-Bladder management difficulties
Ability to carry out bladder program, associated challenges, and effect on the quality of life.
SD3-Bowel management difficulties (5-item fixed length)
Bladder complications like UTI and their effect on sexual life, spasticity, and daily living.
SD4- Pressure ulcers (fixed length)
It measures the effect of pressure ulcers on the physical health, social life, cognitive functioning, and recreational activities of the individual.
SD5- Pain interference
Measures the impact of pain on daily life and how it interferes with living and socializing.
SD6- Pain behavior (7-item fixed length)
It reports verbal and non-verbal reactions to the pain.
SD7- Depression
Question bank adapted from PROMIS, measures despair, loss of interest, hopelessness, and worthlessness. Physical symptoms like changes in sleep and appetite have been excluded for accuracy in SCI.
SD8- Anxiety
It is a measure of hyperarousal, worry about the future, and panic. It has been adapted from the PROMIS question bank.
SD9- Resilience
It is among the most critical measures of SCI; it is about overcoming depression and anxiety and adapting to new realities. It is a crucial measure of rehabilitation and long-term progress in adaptation.
SD10- Positive affect and wellbeing
Drawn from Neuro QOL, measure overall sense of well-being, satisfaction, and feeling purpose in life.
SD11- Grief or loss
It is a more natural and acute reaction to SCI, consisting of feelings of despair, guilt, anger, and sadness.
SD12- Self-esteem
It is a perception of personal worth and how individuals compare themselves with others.
SD13- Stigma
Adapted from Neuro QOL’s Stigma, it measures the level of discrimination due to visible disability.
SD14- Psychological trauma
It measures feelings of fear, horror, helplessness, due to either real or perceived threats to life and wellbeing.
SD15- Ability to participate in social roles and activities
The degree to which a person is involved and active in social events.
SD16- Satisfaction with social role and activities
It is all about the level of an individual’s satisfaction in participating in social activities.
SD17- Independence
It is all about the feeling of a sense of control over one’s life.
SD18- Basic mobility
Ability to move around, carry objects, manipulate the environment independently.
SD19- Self-care
Individuals’ ability to do day-to-day activities like eating, dressing, grooming, and bathing. It provides additional information on bladder and bowel management.
SD20- Fine motor functioning
Ability to do finer tasks, requiring more significant control over extremities as compared to basic mobility.
SD21- Wheelchair mobility
It is a measure of the ability to maneuver and move independently in a wheelchair. It is a general ability to use assistive technologies. Thus, questions are both about the manual and powered wheelchairs.
SD22- Ambulation
Only for those who can walk. It measures the speed and overall ability to move around.
As with most health-related measures, SCI QOL can be implemented with minimum training and provides the best results when carried out on a mobile device through ConductScience Digital Health. Further, platforms like Qolty provide the option of long-term data analysis, which is especially useful in SCI for monitoring the progress over the years.
CAT gives 4 to 12 questions for each subdomain. It usually starts with the most challenging problems and then depending on the response it decides (based on an algorithm), whether to continue or discontinue. For example, it is useless to ask a person about the feeling of exhaustion after walking fifty steps, if an individual cannot walk at all, on the other hand, if a person can walk then further questions can be given to understand the level of ambulation. Finally, based on the responses, the computer can automatically calculate the final score.
It is only available in English. In the future, it may get translated into other European languages.
The acute need for better, comprehensive, and specific health-related quality measures in spinal injury has been felt, as other generic scales like SF-36 and WHOQOL-BREF provided limited information (Boakye, Leigh, & Skelly, 2012). SCI-QOL is the first scale that fulfills that gap and provides complete information about the quality of life after SCI taking into account all the details of the physical, emotional, and social quality of life. ConductScience Digital Health’s integration offers much more robust functionality, precision, mobility, multiplatform support, automated generation of the scores, and the ability to visualize and analyze data over an extended period. Thus helping to verify the effectiveness of treatment and rehabilitative interventions.
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