Spinal Cord Injury - Quality of Life Stigma

Last Updated

June 16, 2016

Purpose

The SCI-QOL Stigma instrument assesses perceptions of prejudice and discrimination in individuals with spinal cord injury.

Link to Instrument

Acronym SCI-QOL Stigma

Area of Assessment

Mental Health
Quality of Life
Stress & Coping

Assessment Type

Patient Reported Outcomes

Administration Mode

Computer

Cost

Free

Cost Description

Paper copies of short forms are available. PDFs can be requested through emails to sci-qol@udel.edu and tbi-qol@udel.edu

Electronic versions can be found in the NIH Toolbox or the PROMIS app. Either app is $500/yr, and covers up to 10 iPads on a single license. The SCI-QOL and TBI-QOL CATs can be administered directly through these apps. It is important to note that using the app requires you to be physically with the participant or read the questions aloud by interview over the phone - there is no way to send a link to have someone complete the measures at home.

Free electronic versions are available. If your institution has REDCap, the CATs and short forms can be accessed through the REDCap instrument library by searching for the specific measure you want and adding them to your REDCap project. For non-REDCap alternatives, the SCI-QOL and TBI-QOL short forms can be imported into an alternative electronic administration platform such as Qualtrics, SurveyMonkey, Google Forms, etc. Email sci-qol@udel.edu or tbi-qol@udel.edu to request PDF versions.

Diagnosis/Conditions

Spinal Cord Injury

Spinal Injuries

The SCI-QOL Stigma measure is an item response theory (IRT)-calibrated item bank with 23 items that is available for administration as a computer adaptive test (CAT; range 4-12 items) or 10 item short form (SF). 5 items were newly generated and 18 items were adapted from the Neuro-QOL measurement scale.

Number of Items

23
Short: 10
CAT: 4-12

The short form requires the form and a pencil.
A CAT administration requires a computer with internet connection.
Access to the CATs through Assessment Center, is available through SCI-QOL@udel.edu.

Less than 5 minutes

Required Training

Reading an Article/Manual

Adults

18 - 64

years

Older Adults

65 +

years

Instrument Reviewers

Review completed by Kelsey Stipp, M.S. and Kristian Nitsch, M.S.

ICF Domain

Body Function

Measurement Domain

Emotion

Considerations

Do you see an error or have a suggestion for this instrument summary? Please e-mail us!

Standard Error of Measurement (SEM)

Depends upon mode of administration:

Full Item Bank: Mean SEM= 0.16 (Range= 0.10-0.54)
10 Item Short Form: Mean SEM= 0.22 (Range= 0.14 to 0.57)
10-Item Fixed CAT: Mean SEM= 0.20 (Range= 0.13-0.55)
Variable Length CAT (Min 8): Mean SEM= 0.20 (Range= 0.14 to 0.55)
Variable Length CAT (Min 4): Mean SEM= 0.25 (0.19-0.55)

Minimal Detectable Change (MDC)

Calculated Using Mean SEM:

Full Item Bank: MDC= 8.5
10-Item Fixed CAT: MDC= 8.65
Variable Length CAT: MDC= 8.45

Normative Data

Neurological Disorder: The normative data are calibrated on adults with neurological disorders. The mean (T=50) indicates a score that is normal for an adult with a neurological disorder. (Kisala et al., 2015; n=611, Mean Age= 42.9, SD= 15.5; Time Post Injury= 6.7, SD= 8.7; 44% Paraplegia, 56% Tetraplegia)

Test/Retest Reliability

Traumatic SCI (Kisala et al., 2015; Baseline and 1-2 week retest assessments)

Full Item Bank CAT:

Excellent: (Pearson's r= 0.80)
Adequate: (ICC= 0.79)

10-Item Short Form:

Excellent: (Pearson's r= 0.84)

Internal Consistency

Traumatic SCI: (Kisala et al., 2015)

Full Item Bank: Excellent (Cronbach��s Alpha= 0.94)
10-Item Short Form: Excellent (Cronbach's Alpha= 0.90)

Content Validity

Some items were adapted from the Neuro-QOL measurement systems. Other items were derived from focus groups and interviews with individuals with traumatic SCI (n = 65) and clinicians who specialize in SCI (n = 42) (see Tulsky et al., 2011).

Face Validity

Not statistically assessed, but content was generated from individuals with SCI and expert clinicians; therefore face validity is believed to be strong.

Floor/Ceiling Effects

Traumatic SCI(Kisala et al., 2015)

Full Item Bank:

Floor Effect: Adequate to Excellent (4.26%)
Ceiling Effect: Excellent (0.16%)

10-Item Short Form:

Floor Effect: Adequate to Excellent (4851%)
Ceiling Effect: Excellent (0.16%)

10-Item Fixed Length CAT:

Floor Effect: Adequate to Excellent (5.4%)
Ceiling Effect: Excellent (0.16%)

Variable-Length CAT (Min 8):

Floor Effect: Adequate to Excellent (4.75%)
Ceiling Effect: Excellent (0.16%)

Variable Length CAT (Min 4):

Floor Effect: Adequate to Excellent (4.75%)
Ceiling Effect: Excellent (0.16%)

Bibliography

Kisala, P. A., Tulsky, D. S., Pace, N., Victorson, D., Choi, S. W., & Heinemann, A. W. (2015). Measuring stigma after spinal cord injury: Development and psychometric characteristics of the SCI-QOL Stigma item bank and short form. Journal of Spinal Cord Medicine, 38(3), 386-396

Tulsky, D. S., Kisala, P. A., Victorson, D., Tate, D., Heinemann, A. W., Amtmann, D., & Cella, D. (2011). Developing a contemporary patient-reported outcomes measure for spinal cord injury. Archives of Physical Medicine and Rehabilitation, 92(10), S44-S51.

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