Rehabilitation Measures Database
  1. Rehabilitation Measures Database
  2. Spinal Cord Injury - Quality of Life Grief / Loss

Spinal Cord Injury - Quality of Life Grief / Loss

Last Updated

Purpose

The SCI-QOL Grief / Loss instrument assesses the emotional reactions of grief and feelings of loss in response to sustaining a spinal cord injury (SCI).

Link to Instrument

Acronym SCI-QOL Grief / Loss

Area of Assessment

Mental Health
Negative Affect
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

Populations

Spinal Injuries

Key Descriptions

  • The SCI-QOL Grief / Loss instrument?is an item response theory (IRT)-calibrated item bank with 17 items that is available for administration as a computer adaptive test (CAT; range 4-12 items) or 9 item short form (SF).

Number of Items

17

Short form: 9

CAT: 4-12

Equipment Required

  • The Short Form (SF) version requires only the printed form and a pencil. A CAT administration requires a desktop, laptop, or tablet computer with internet connection and login to AssessmentCenter.net.
  • Access to the short form, and administration of CATs is available online. Email SCI-QOL@udel.edu to request electronic versions.
  • Please see 'Cost Description' for more information on how to access this measure

Time to Administer

Less than 5 minutes

Required Training

Reading an Article/Manual

Age Ranges

Adults

18 - 64

years

Elderly Adults

65 +

years

Instrument Reviewers

Review completed by Kelsey Stipp, MS and Kristian Nitsch, MS for the Rehabilitation Measures Database Team.

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!

Spinal Injuries

back to Populations

Standard Error of Measurement (SEM)

Depends upon mode of administration:

  • Full Item Bank: Mean SEM= 2.18 (Range= 0.16-0.48)

  • 9-Item Short Form: Mean SEM= 0.27 (Range= 0.20 - 0.51)

  • 9-Item Fixed CAT: Mean SEM= 0.25 (Range= 0.19-0.49)

  • Variable-length CAT (Min 8): Mean SEM= 0.56 (Range= 0.20 - 0.49)

  • Variable Length CAT (Min 4): Mean SEM= 0.30 (0.26-0.49) 

Minimal Detectable Change (MDC)

Calculated Using Mean SEM at 95% Confidence Interval:

  • Full Item Bank: MDC= 6.04

  • 9-Item Fixed CAT: MDC= 0.69

  • Variable Length CAT (Min 4): MDC= 0.83

Normative Data

(n= 716; Mean Age= 43, SD= 15.3; Time Post Injury= 7.1, SD= 10; 45% Paraplegia, 55% Tetraplegia)

Test/Retest Reliability

Traumatic SCI(Kalpakjian et al., 2015)

  • Excellent: (Pearson's r= 0.84)
  • Excellent: (ICC= 0.83)

Internal Consistency

Traumatic SCI(Kalpakjian et al., 2015)

  • Full Item Bank - Excellent: (Cronbach's alpha= 0.95)

Content Validity

Items were derived from focus groups and interviews with individuals with traumatic SCI (n=65) and clinicians who specialize in SCI care (n=42) (Tulsky et al., 2011).

Face Validity

Not statistically assessed, but all content was generated in collaboration with patients with SCI and expert clinicians, so face validity is believed to be strong.

Floor/Ceiling Effects

Traumatic SCI(Kalpakjian et al., 2015)

 

Full Item Bank:

  • Floor Effect: Adequate to Excellent (4.8%)

  • Ceiling Effect: Excellent (0.3%)

9-Item Short Form:

  • Floor Effect: Adequate to Excellent (6.2%)

  • Ceiling Effect: Adequate to Excellent (1.4%)

9-Item Fixed Length CAT:

  • Floor Effect: Adequate to Excellent (5.4)

  • Ceiling Effect: Excellent (0.3%)

Variable-length CAT (Min 8):

  • Floor Effect: Adequate to Excellent (4.9%)

  • Ceiling Effect: Excellent (0.3%)

Variable-length CAT (Min 4):

  • Floor Effect: Adequate to Excellent (4.9%)

  • Ceiling Effect: Excellent (0.3%)

Bibliography

Kalpakjian, C.Z., Tulsky, D.S., Kisala, P.A., & Bombardier, C.H. (2015). Measuring grief and loss after spinal cord injury. Development, validation, and psychometric characteristics of the SCI-QOL Grief and Loss item bank and short form. Journal of Spinal Cord Medicine, 38(3), 347-355.

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.

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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