Quality of life issues in individuals with spinal cord injury

doi:10.1053/apmr.2002.36835

Archives of Physical Medicine and Rehabilitation

Volume 83, Supplement 2, December 2002, Pages S18-S25

https://doi.org/10.1053/apmr.2002.36835 Get rights and content

Abstract

Tate DG, Kalpakjian CZ, Forchheimer MB. Quality of life issues in individuals with spinal cord injury. Arch Phys Med Rehabil 2002;83 Suppl 2:S18-25. Assessments of quality of life (QOL) are increasingly used in rehabilitation, embracing a number of conceptual approaches and measurement tools. Very few studies on QOL have addressed the specific needs of persons with spinal cord injury (SCI). Literature reviewed here describes 2 meta-analytical studies on SCI as well as several individual studies that focus on predictors and correlates of QOL applied to SCI. Results from a unique study on QOL after SCI using a qualitative methodology are also discussed. In addition, we describe the findings from another study, which used the Medical Outcomes Study 12-Item Short-Form Health Survey to assess QOL and relate it to the concept of being disabled. © 2002 by the American Congress of Rehabilitation Medicine

Section snippets

A review of QOL in SCI studies

Early efforts at assessing QOL in rehabilitation commonly involved health status or was qualified by the term health-related. To some, this was a subversion of construct of QOL, bringing it into conformity with the biomedical model.³ In general, objective indicators of QOL in rehabilitation have included health status, impairment, disability, societal participation, independent living, and employment. Fuhrer³ suggests that critics of using health status as a reflection of QOL encourage an

Discussion

There has been a large increase in the number of studies assessing QOL among persons with SCI. These studies have used a variety of methodologic approaches and assessment tools to examine the role of different factors in predicting QOL in SCI populations. The mixture of studies from the United States, Canada, and Western Europe provide an interesting perspective in that overt or substantial variations among groups of persons with SCI were not observed based on country of residence. This implies

Conclusions

Current measures of QOL have numerous limitations with respect to their use among persons with SCI. Not having been developed for persons with locomotor disabilities, the importance and relevance of the measures' content is frequently questionable; they often lack consistency and sensitivity to capture changes in internal standards and personal values among persons with SCI. As stated, the concept of response shift poses a challenge to the validity of these measures. This is suggested by

Acknowledgements

We thank the other SCI Model Systems and the National Spinal Cord Injury Statistical Center at the University of Alabama, Birmingham, AL, for making the SF-12 data available to us for these analyses.

References (33)

J. Putzke et al.
Quality of life after spinal cord injury caused by gunshot
Arch Phys Med Rehabil
(2001)
K. Hall et al.
Follow-up study of individuals with high tetraplegia (C1-C4) 14 to 24 years postinjury
Arch Phys Med Rehabil
(1999)
M. Dijkers
Correlates of life satisfaction among persons with spinal cord injury
Arch Phys Med Rehabil
(1999)
N. Westgren et al.
Quality of life and traumatic spinal cord injury
Arch Phys Med Rehabil
(1998)
P. Manns et al.
Determining the relation between quality of life, handicap, fitness and physical activity for persons with spinal cord injury
Arch Phys Med Rehabil
(1999)
M. Post et al.
Predictors of health status and life satisfaction in spinal cord injury
Arch Phys Med Rehabil
(1998)
S. Schumaker et al.
Psychological tests and scales
C. Schwartz et al.
Adaptation to changing health: response shift in quality-of-life research
M. Fuhrer
Subjectifying quality of life as a medical rehabilitation outcome
Disabil Rehabil
(2000)
M. Post et al.
Life satisfaction of persons with spinal cord injury compared to a population group
Scand J Rehabil Med
(1998)

M. Kreuter et al.

Partner relationships, functioning, mood and global quality of life in persons with spinal cord injury and traumatic brain injury

Spinal Cord

(1998)

C. Duggan et al.

Quality of life after spinal cord injury: a qualitative study

Rehabil Psychol

(2001)

R. Evans et al.

Quality of life after spinal cord injury: a literature critique and meta-analysis (1983-1992)

J Am Paraplegia Soc

(1994)

M. Dijkers

Quality of life after spinal cord injury: a meta analysis of the effects of disablement components

Spinal Cord

(1997)

P. Hallin et al.

Spinal cord injury and quality of life measures: a review of instrument psychometric quality

Spinal Cord

(2000)

M. Kannisto et al.

Comparison of health-related quality of life in three subgroups of spinal cord injury patients

Spinal Cord

(1998)

Cited by (138)

The Effect of Concomitant Spinal Cord Injury on Postoperative Health-related Quality of Life After Traumatic Subaxial Cervical Spine Injuries: A Nationwide Registry Study
2024, Archives of Physical Medicine and Rehabilitation
To evaluate the effect of spinal cord injury (SCI) on the health-related quality of life (HRQoL) in patients surgically treated for traumatic subaxial cervical spine injuries and investigate the agreement between objective neurologic outcomes and patient reported outcome measures (PROMs) in that context.
Observational study on prospectively collected multi-institutional registry data.
Sweden.
Patients with traumatic subaxial spine injuries identified in the Swedish Spine Registry (Swespine) between 2006 and 2016.
Anterior, posterior, or anteroposterior cervical fixation surgery.
Patient-reported outcome measures (PROMs) consisting of EQ-5D-3L_index and Neck Disability Index (NDI).
Among the 418 identified patients, 93 (22%) had a concomitant SCI. In this group, 30 (32%) had a complete SCI (Frankel A), and the remainder had incomplete SCIs (17%) Frankel B; 25 (27%) Frankel C; 22 (24%) Frankel D. PROMs significantly correlated with the Frankel grade (P<.001). However, post hoc analysis revealed that the differences between adjacent Frankel grades failed to reach both statistical and clinical significance. On univariable linear regression, the Frankel grade was a significant predictor of a specific index derived from the EQ-5D-3L questionnaire (EQ-5D-3L_index) at 1, 2, and 5 years postoperatively as well as the NDI at 1 and 2 years postoperatively (P<.001). Changes of PROMs over time from 1, to 2, and 5 years postoperatively did not reach statistical significance, regardless of the presence and degree of SCI (P>.05).
Overall, the Frankel grade significantly correlated with the EQ-5D-3L_index and NDI and was a significant predictor of PROMs at 1, 2, and 5 years. PROMs were stable beyond 1 year postoperatively regardless of the severity of the SCI.
Perspectives on quality of life among disability-related organization leaders serving individuals with paralysis
2023, Evaluation and Program Planning
Understanding how the Christopher & Dana Reeve Foundation Quality of Life grant recipients define quality of life has value in helping to further develop and refine the literature on this topic for individuals with spinal cord injury and/or organizations working to serve and/or support individuals with spinal cord injury. The purpose of this organizational evaluation project’s evaluation activities was to engage with Quality of Life (QOL) Grant recipients, namely leaders at disability-related organizations across the United States, to better understand their definitions and operationalization of the term, “quality of life”. To do so systematically, researchers compiled a list of all QOL grant recipients from two 2016 grant cycles and divided them into three categories based on the award amount. From these categories, we randomly selected organizations to invite to provide input. Phone interviews were completed with 19 grant recipients. A thematic content analysis was completed across the resulting transcripts using MAXQDA software. The sub-themes identified by researchers included: community connection, independence, self-determination, caregiver communication, and including caregivers in programs. Our analysis demonstrates the importance of both community and caregiver relationships to organizations that focus on QOL for people with SCI. Novel findings suggest the importance of community and connection as well as a reframing of both the constructs of independence and control within QOL. Lessons for evaluators are also provided.
Quality of life tools for spinal cord-injured people
2022, Diagnosis and Treatment of Spinal Cord Injury
The assessment of quality of life (QOL), defined as “individual’s perception of his/her position in life within his/her context,” is a matter of debate, which may even be stronger when it comes to people with disabilities, as the spinal cord–injured population. QOL may be perceived in a subjective manner by the affected person or objectively by the viewer, including QOL aspects that are disrupted by the disease or lesion (health-related quality of life—HRQOL).
Instruments to measure QOL in people with spinal cord injury (SCI) should consider both perspectives, although there is no consensus on the issue. The most widely used QOL instruments are the general ones, some of which have been adapted to SCI, e.g., WHO-Quality of Life instrument, Satisfaction with Life Scale, MOS Short Form 36, or EuroQol-5D instrument.
Instruments for assessing QOL specifically associated to SCI sequelae have not been sufficiently validated, although for the most relevant conditions, there are widely used tools, such as Qualiveen, Patient-Reported Impact of Spasticity Measure, or Brief Pain Inventory.
We think that it is important to establish international agreements for the use of validated instruments that allow inter-population comparisons for measuring the different faces of QOL in people with SCI.
Outcome measures
2022, Neural Repair and Regeneration after Spinal Cord Injury and Spine Trauma
The devastating and wide-ranging consequences of spinal cord injury (SCI) warrant the development and examination of a large array of outcomes for guiding management. In this chapter, we will critically examine the imaging, functional, patient-reported, and electrophysiological outcomes evaluated after SCI. An understanding of the roles and limitations of these metrics is crucial for the physician treating SCI, who is concerned about everything ranging from the autonomic sequelae of spinal cord injury to the patient's experience in receiving care for their SCI.
Exoskeletal-Assisted Walking During Acute Inpatient Rehabilitation Leads to Motor and Functional Improvement in Persons With Spinal Cord Injury: A Pilot Study
2020, Archives of Physical Medicine and Rehabilitation
To explore the potential effects of incorporating exoskeletal-assisted walking (EAW) into spinal cord injury (SCI) acute inpatient rehabilitation (AIR) on facilitating functional and motor recovery when compared with standard of care AIR.
A quasi-experimental design with a prospective intervention group (AIR with EAW) and a retrospective control group (AIR only).
SCI AIR facility.
Ten acute inpatient participants with SCI who were eligible for locomotor training were recruited in the intervention group. Twenty inpatients with SCI were identified as matched controls by reviewing an AIR database, Uniform Data System for Medical Rehabilitation, by an individual blinded to the study. Both groups (N=30) were matched based on etiology, paraplegia/tetraplegia, completeness of injury, age, and sex.
EAW incorporated into SCI AIR.
FIM score, International Standards for Neurological Classification of Spinal Cord Injury Upper Extremity Motor Score and Lower Extremity Motor Scores (LEMS), and EAW session results, including adverse events, walking time, and steps.
Changes from admission to discharge LEMS and FIM scores were significantly greater in the intervention group (LEMS change: 14.3±10.1; FIM change: 37.8±10.8) compared with the control group (LEMS change: 4.6±6.1; FIM change: 26.5±14.3; Mann-Whitney U tests: LEMS, P<.01 and FIM, P<.05). One adverse event (minor skin abrasion) occurred during 42 walking sessions. Participants on average achieved 31.5 minutes of up time and 18.2 minutes of walk time with 456 steps in one EAW session.
Incorporation of EAW into standard of care AIR is possible. AIR with incorporated EAW has the potential to facilitate functional and motor recovery compared with AIR without EAW.
Home-Based Exercise Enhances Health-Related Quality of Life in Persons With Spinal Cord Injury: A Randomized Controlled Trial
2018, Archives of Physical Medicine and Rehabilitation
To assess the influence of a home-based exercise intervention on indices of health-related quality of life (HRQOL) in persons with spinal cord injury (SCI).
This was a randomized controlled trial (HOMEX-SCI; ISRCTN57096451). After baseline laboratory testing and a week of free-living physical activity monitoring, eligible participants were randomly assigned (2:1 allocation ratio) to a home-based moderate-intensity upper-body exercise intervention group (INT, n=13), or a lifestyle maintenance control group (CON, n=8), for 6 weeks.
Home-based with short laboratory visits immediately before and after the intervention/control period.
Inactive participants (N=21) with chronic (>1yr) SCI (injury level <T4).
Participants assigned to the INT completed 4, 45-minute moderate-intensity (60%-65% peak oxygen uptake) arm-crank exercise sessions per week for 6 weeks. Participants assigned to the control group (CON) were asked to maintain their habitual physical activity behavior.
Secondary outcome measures were assessed, including physical and mental component scores (PCS and MCS) of health-related quality of life (HRQOL), fatigue, global fatigue (FSS), and shoulder pain index (WUSPI). Cardiorespiratory fitness (CRF), objectively measured habitual moderate-to-vigorous physical activity (MVPA), and exercise self-efficacy (ESE) were also assessed at baseline and follow-up.
Changes in the PCS (P=.017) of the Short Form 36 Health Survey (SF-36), ESE (P=.011), and FSS (P=.036) were significantly different between the 2 groups, with moderate to large effect sizes (d=0.75-1.37). Various HRQOL outcomes demonstrated likely to very likely positive inferences in favor of the INT group following the 6-week exercise intervention. Changes in ESE were significantly (P<.01) associated with changes in PCS (r=0.62), MCS (r=0.71), FSS (r=-0.71), and global fatigue (r=0.57).
A 6-week upper-body exercise intervention improved indices of HRQOL in persons with SCI. Improvements were associated with increases in ESE. While this intervention demonstrated a positive effect on perceived physical functioning, future interventions should aim to support social and mental functioning and exercise maintenance.

View all citing articles on Scopus

View full text

Quality of life issues in individuals with spinal cord injury

Abstract

Section snippets

A review of QOL in SCI studies

Discussion

Conclusions

Acknowledgements

Arch Phys Med Rehabil

Arch Phys Med Rehabil

Arch Phys Med Rehabil

Arch Phys Med Rehabil

Arch Phys Med Rehabil

Arch Phys Med Rehabil

Psychological tests and scales

Adaptation to changing health: response shift in quality-of-life research

Subjectifying quality of life as a medical rehabilitation outcome

Disabil Rehabil

Life satisfaction of persons with spinal cord injury compared to a population group

Scand J Rehabil Med

Partner relationships, functioning, mood and global quality of life in persons with spinal cord injury and traumatic brain injury

Spinal Cord

Quality of life after spinal cord injury: a qualitative study

Rehabil Psychol

Quality of life after spinal cord injury: a literature critique and meta-analysis (1983-1992)

J Am Paraplegia Soc

Quality of life after spinal cord injury: a meta analysis of the effects of disablement components

Spinal Cord

Spinal cord injury and quality of life measures: a review of instrument psychometric quality

Spinal Cord

Comparison of health-related quality of life in three subgroups of spinal cord injury patients

Spinal Cord