Quality of Life after Brain Injury

Last Updated

December 14, 2012

Expertise, Instruction and Mentorship

Center for Smart Use of Technologies to Assess Real World Outcomes (C-STAR)

Learn more

Upcoming Stroke Course

May 9–10
Live and Online

Offered by Academy, Shirley Ryan AbilityLab

Purpose

A health-related QOL instrument for survivors of TBI that includes the person’s subjective perspective.

Link to Instrument

Instrument Details

Acronym QOLIBRI

Cost

Free

Cost Description

None except for commercial use

Diagnosis/Conditions

Brain Injury Recovery

Brain Injury

37-item scale with six subscales.
The first part assesses satisfaction level with HRQOL and is composed of 6 overall items and 29 items assigned to 4 subscales:
1) Thinking
2) Feelings and emotion
3) Autonomy in daily life
4) Social aspects
The second part is devoted to “bothered” questions and composed of 12 items in 2 subscales:
1) Negative feelings
2) Restrictions
Responses to the ‘satisfaction’ items (i.e. items on the Cognition, Self, Daily Life & Autonomy, and Social Relationships scales) are coded on a 1 to 5 scale, where 1= “not at all satisfied” and 5=”very satisfied.”
Responses to the ‘bothered’ items (i.e. items on the Emotions and Physical Problems scales) are reverse scored to correspond with the satisfaction items, where 1=”very bothered” and 5=”not at all bothered.”
The responses on each scale and QOLIBRI total score are summed to give a total, and then divided by the number of responses to give a scale mean. The scale means have a maximum possible range of 1 to 5. The mean can be computed when there are some missing responses, but should not be calculated if more than one third of responses on the scale are missing.
The scale means are converted to the 0-100 scale by subtracting 1 from the mean and then multiplying by 25. This produces scale scores which have a lowest possible value of 0 (worst possible quality of life) and a maximum value of 100 (best possible quality of life).
QOLIBRI-Overall Scale (OS): developed in 2012; 6-item scale of overall judgment of different aspects of HRQOL (available in online appendix: Steinbeuchel 2012); Areas covered include physical condition, cognition, emotions, function in daily life, personal and social life, and current situation and future prospects; Responses to each item were scored 1 (‘Not at all’) to 5 (‘Very’), and the sum of all items was converted arithmetically to a percentage scale, with 0 representing the lowest possible HRQoL on the questionnaire and 100 the best possible HRQoL.

Number of Items

QOLIBRI: 37
QOLIBRI-OS: 6

15 minutes

Required Training

No Training

Instrument Reviewers

Initially reviewed by Anny de Joya, PT, MS, NCS and the TBI EDGE task force of the Neurology Section of the APTA in 9/2012

ICF Domain

Participation

Professional Association Recommendation

Recommendations for use of the instrument from the Neurology Section of the American Physical Therapy Association’s Multiple Sclerosis Taskforce (MSEDGE), Parkinson’s Taskforce (PD EDGE), Spinal Cord Injury Taskforce (PD EDGE), Stroke Taskforce (StrokEDGE), Traumatic Brain Injury Taskforce (TBI EDGE), and Vestibular Taskforce (Vestibular EDGE) are listed below. These recommendations were developed by a panel of research and clinical experts using a modified Delphi process.

For detailed information about how recommendations were made, please visit: http://www.neuropt.org/go/healthcare-professionals/neurology-section-outcome-measures-recommendations

Abbreviations:
HR	Highly Recommend
R	Recommend
*LS / UR*	Reasonable to use, but limited study in target group / Unable to Recommend
NR	Not Recommended

Recommendations based on level of care in which the assessment is taken:

Acute Care

Inpatient Rehabilitation

Skilled Nursing Facility

Outpatient

Rehabilitation

Home Health

TBI EDGE

Recommendations for use based on ambulatory status after brain injury:

	Completely Independent	Mildly dependant	Moderately Dependant	Severely Dependant
TBI EDGE	N/A	N/A	N/A	N/A

Recommendations for entry-level physical therapy education and use in research:

	Students should learn to administer this tool? (Y/N)	Students should be exposed to tool? (Y/N)	Appropriate for use in intervention research studies? (Y/N)	Is additional research warranted for this tool (Y/N)
TBI EDGE	No	Yes	Yes	Not reported

Considerations

The questionnaire has been validated in various languages from several countries
The process of development was guided by WHO concept of QOL
In cases of severe cognitive impairment, observer rating preferred (Bullinger and von Steinbuchel, 2001; Von Steinbuchel et al, 2010)

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

Standard Error of Measurement (SEM)

Traumatic Brain Injury (QOLIBRI-OS): (Steinbeuchel et al, 2012; international data set=9 countries, 6 languages; n=792; age=17-30 years: 34%, 31-44 years: 31%, 45-68 years: 35%; gender=male 72%; years since injury=<1 year: 12%, 1-<2 years: 13%, 2-<4 years: 26%, 4-18 years: 50%)

Confirmatory factor analysis demonstrated that a model with one underlying factor had a reasonable fit (comparative fit index =0.98; root mean square error of approximation =0.07; X^2=39.62, df=9, p(X^2)<0.001), although, not unexpectedly with a large sample size, the p value of X^2 reached significance

Test/Retest Reliability

Traumatic Brain Injury: (Von Steinbuchel et al, 2005; German data set, n=86; no information on age and gender)

Adequate to excellent test retest reliability (above 0.73 for all scales)

Traumatic Brain Injury: (Von Steinbuchel et al, 2010; International Data Set=6 languages;n=343-381; age=17-30 years:34%, 31-44 years:31%, 45-68%: 35%; gender: 72%; years since injury: <1 year: 12%, 1-<2 years: 13%, 2-<4 years: 26%, 4-18 years: 50%)

All participants
- Excellent test retest reliability, Cognition (ICC=0.81, n=380)
- Excellent test retest reliability, Self (ICC=0.84, n=381)
- Excellent test retest reliability, Daily life and autonomy (ICC=0.83, n=379)
- Excellent test retest reliability, Social relationships (ICC=0.79, n=381)
- Excellent test retest reliability, Emotions (ICC=0.78, n=376)
- Excellent test retest reliability, Physical problems (ICC=0.84, n=343)
- Excellent test retest reliability, QOLIBRI total (ICC=0.91, n=380)

Low MMSE/TICS n = 84; High MMSE/TICS n = 121
	Low MMSE/TICS	High MMSE/TICS
Cognition	0.81 (Excellent)	0.80 (Excellent)
Self	0.84 (Excellent)	0.85 (Excellent)
Daily life & autonomy	0.85 (Excellent)	0.82 (Excellent)
Social relationships	0.70 (Adequate)	0.80 (Excellent)
Emotions	0.68 (Adequate)	0.69 (Adequate)
Physical problems	0.80 (Excellent)	0.88 (Excellent)
QOLIBRI total	0.87 (Excellent)	0.90 (Excellent)
MMSE, Mini Mental State Examination; TICS, Telephone Interview for Cognitive Status

	English		Finnish		French		German
	n	ICC	n	ICC	n	ICC	n	ICC
Cognition	56	0.80	48	0.76	130	0.79	119	0.84
Self	56	0.83	49	0.83	128	0.80	119	0.88
Daily Life & Autonomy	56	0.77	49	0.83	128	0.80	119	0.85
Social Relationships	56	0.79	49	0.75	130	0.79	119	0.77
Emotions	54	0.76	49	0.76	128	0.79	118	0.70
Physical Problems	55	0.83	49	0.79	94	0.80	118	0.89
QOLIBRI Total	56	0.88	49	0.87	129	0.91	119	0.90

Traumatic Brain Injury (QOLIBRI-OS): (Von Steinbeuchel et al, 2012; international data set=9 countries, 6 languages; n=375; age=17-30 years: 32%, 31-44 years: 29%, 45-68 years: 39%; gender=male 72%; years since injury=<1 year: 10%, 1-<2 years: 12%, 2-<4 years: 30%, 4-18 years: 48%; test interval: 2 weeks; MMSE, Mini Mental State Examination; TICS, Telephone Interview for Cognitive Status)

Excellent test retest reliability, total sample (ICC=0.81)
Excellent test retest reliability, Dutch version (ICC=0.81)
Adequate test retest reliability, English version (ICC=0.61)
Excellent test retest reliability, Finnish version (ICC=0.86)
Excellent test retest reliability, French version (ICC=0.75)
Excellent test retest reliability, German version (ICC=0.86)
Excellent test retest reliability, low MME/TICS (ICC=0.81)
Excellent test retest reliability, high MMSE/TICS (ICC=0.82)

Internal Consistency

Traumatic Brain Injury: (Von Steinbuchel et al, 2005; German data set, n=86; no information on age and gender)

Cronbach’s alpha: Satisfaction subscales, ranges from .75 to .95
‘‘Bothered by’’ items not analyzed

Traumatic Brain Injury: (Von Steinbuchel et al, 2010; Intrenational Data Set=6 languages; n=795; age=17-30 years:34%, 31-44 years:31%, 45-68%: 35%; gender: 72%; years since injury: <1 year: 12%, 1-<2 years: 13%, 2-<4 years: 26%, 4-18 years: 50%)

Cronbach's Alpha	All	Dutch	English	Finnish
Cognition	0.89	0.89	0.92	0.92
Self	0.89	0.84	0.90	0.90
Daily Life & Autonomy	0.87	0.82	0.93	0.88
Social Relationships	0.83	0.74	0.88	0.87
Emotions	0.83	0.64	0.88	0.83
Physical Problems	0.75	0.69	0.80	0.79
QOLIBRI Total	0.95	0.94	0.97	0.95

Cronbach's Alpha	French	German	Low MMSE/TICS	High MMSE/TICS
Cognition	0.83	0.91	0.91	0.91
Self	0.87	0.91	0.88	0.89
Daily Life & Autonomy	0.76	0.90	0.88	0.90
Social Relationships	0.77	0.85	0.84	0.83
Emotions	0.79	0.84	0.86	0.76
Physical Problems	0.64	0.83	0.81	0.76
QOLIBRI Total	0.92	0.96	0.95	0.96
MMSE, Mini Mental State Examination; TICS, Telephone Interview for Cognitive Status

Traumatic Brain Injury (QOLIBRI-OS): (Von Steinbeuchel et al, 2012; international data set=9 countries, 6 languages; n=792; age=17-30 years: 34%, 31-44 years: 31%, 45-68 years: 35%; gender=male 72%; years since injury=<1 year: 12%, 1-<2 years: 13%, 2-<4 years: 26%, 4-18 years: 50%)

Excellent internal consistency, total sample (Cronbach’s alpha=0.86)
Adequate internal consistency, Dutch version (Cronbach’s alpha=0.79)
Excellent internal consistency, English version (Cronbach’s alpha=0.91)
Excellent internal consistency, Finnish version (Cronbach’s alpha=0.88)
Excellent internal consistency, French version (Cronbach’s alpha=0.82)
Excellent internal consistency, German version (Cronbach’s alpha=0.89)
Excellent internal consistency, Italian version (Cronbach’s alpha=0.81)
Excellent internal consistency, low MMSE/TICS (Cronbach’s alpha=0.88)
Excellent internal consistency, high MMSE/TICS (Cronbach’s alpha=0.87)

Construct Validity

Traumatic Brain Injury: (Von Steinbuchel et al, 2005; German data set, n=86; no information on age and gender)

Convergent correlations with the anxiety scale of the Hospital Anxiety Depression scale (HAD): coefficients between -0.37 and-0.68, and for HAD depression scale coefficients between -0.60 and -0.74

Traumatic Brain Injury: (Von Steinbuchel et al, 2010; International Data Set=6 languages; n=795; age=17-30 years:34%, 31-44 years:31%, 45-68%: 35%; gender: 72%; years since injury: <1 year: 12%, 1-<2 years: 13%, 2-<4 years: 26%, 4-18 years: 50%)

Rasch analysis of individual QOLIBRI scales showed that infit was in the required range for all items in each of the scales
Rasch analysis thus confirms that items have a satisfactory fit with their home scales
Weaker items are ‘‘self-perception,’’ with an infit value of 0.7 suggesting a certain amount of redundancy, and ‘‘run personal finances,’’ with an outfit value of 1.33, which indicates misfitting outliers in the data
Item difficulty measures ranged from -0.47 to 0.61 logits. Principal Components Analysis of the residuals showed that the Rasch model explained 38.2% of the variance, indicating that a unidimensional model explains only a moderate amount of the variance
The infit values indicated that the majority of QOLIBRI items fit an overall Rasch dimension, however, five items with infit values of 1.3 or more: ‘‘partner’’ (infit =1.41), ‘‘sex life’’ (infit=1.30), ‘‘other injuries’’ (infit=1.30), ‘‘pain’’ (infit=1.31), and ‘‘seeing/hearing’’ (infit=1.36)
The results of this analysis give moderate support to a unidimensional model, but also indicate that some of the items in the ‘‘Social relationships’’ and ‘‘Physical problems’’ scales have a poor fit with a unidimensional model
Loadings on the first component of a single-factor solution indicate that items in the first three scales generally have a good fit (loadings>0.6) with a unidimensional HRQoL model descriptive system
Items in the last three scales have a weaker fit with this single-factor descriptive system, and two items (‘‘partner’’ and ‘‘see/hear’’) have a poor fit (loading<.45)
The single-factor PCA is consistent with the Rasch analysis conducted on all items combined, and indicates that there is a unidimensional component to the QOLIBRI, primarily based on the items in the first three scales, which are concerned with cognitive function, self-perception, and independent living
The items from the last three scales, with the two exceptions described above, have moderate fit with this descriptive system model

Traumatic Brain Injury: (Von Steinbeuchel et al, 2010; n=795; mean age=39 (13.3); mean period follow up=5 years (3.9))

The SF-36 PCS has its highest correlation with the QOLIBRI Physical Problems scale (.63), Comorbid Health Conditions (.60)
The HADS anxiety scale correlates most strongly with the QOLIBRI Emotions scale (-.64)
HADS depression with the Self scale (-.62)
The SF-36 MCS correlates most highly with the Emotions (.62), and Self (.56) scales
Help needed with activities correlates most highly with the Daily Life (-.53) and Physical Problems (-.47) scales.
Strongest correlations with the GOSE are with Daily Life (.43) and Physical Problems (.40)
Overall relationship between the GOSE and the QOLIBRI was only moderate, indicating that people could have poor outcome on the GOSE and have good HRQoL and vice versa

Rasch analysis: person separation index =2.46 and reliability=0.86, indicating a good ability to sort respondents into different levels of HRQoL
All items correctly ordered category and threshold measures; values of infit and outfit are well within criteria for fit to the Rasch model
Item location measures ranged from -0.56 logits for the ‘Daily life item’ (ie, the easiest to endorse positively) to 0.29 logits for Cognition (ie, the hardest to endorse positively).
The relatively limited range of item locations indicates that distributions of responses to different items were similar
QOLIBRI-OS strongly correlated with QOLIBRI total (Spearman’s correlation=0.87)
QOLIBRI-OS strongly correlated to all QOLIBRI scales:
- Self scale (Spearman’s correlation=0.81,p<0.001)
- Daily Life and Autonomy scale (r¼0.75, p<0.001)
- Cognition scale (Spearman’s=0.74, p<0.001)
- Social Relationships scale (Spearman’s=0.63, p<0.001)
- Physical Problems (Spearman’s=0.60, p<0.001)
- Emotions scale (Spearman’s=0.56 p<0.001)
All QOLIBRI-OS items showed strong positive correlations with the QOLIBRI total score (Spearman’s=0.64 -0.70), suggesting that the QOLIBRIOS items contributed equally to assessment of the HRQoL construct
German language sample, n=153 Moderate to strong relationships were found among the QOLIBRI-OS and the Extended Glasgow Outcome Scale, Short-Form-36, and Hospital Anxiety and Depression scale (Spearman’s=0.54 to -0.76)

Age	GCS	Time Since Injury	GOSE	SF-36 PCS	SF-36 MCS	HADS Anxiety	HADS Depression
QOLIBRI Total	-0.06	0.08	-0.10	0.58*	0.58*	0.64*	-0.70*	-0.78*
QOLIBRI - OS	-0.06	0.10	-0.08	0.56*	0.53*	0.61*	-0.65*	-0.75*
SWLS	0.08	0.05	-0.03	0.45***	0.38****	0.54*	-0.51****	-0.70*
QOL-VAS	0.07	0.01	0.02	0.32****	0.43*	0.49*	-0.41****	-0.54****

*p<0.001. Steiger’s t test (two-tailed) for a difference with the QOLIBRI-OS correlation: **p<0.05, *** p<0.01. GCS, Glasgow Coma Scale; GOSE, Extended Glasgow Outcome Scale; HADS, Hospital Anxiety and Depression Scale; MCS, Mental Component Score; PCS, Physical Component Score; QOLIBRI-OS, Quality of Life after Brain Injury Overall Scale; QoL-VAS, Quality of Life Visual Analogue Scale; SF-36, Short-Form-36; SWLS, Satisfaction With Life Scale.

Traumatic Brain Injury: (Von Steinbuchel et al, 2005; German data set, n=86; no information on age and gender)

High subscale intercorrelations (r between .54 and .79 for all subscales)

Content Validity

Traumatic Brain Injury: (Bullinger et al, 2002, Von Steinbuchel et al, 2005 and 2010)

In 1999, the conceptual model for the QOLIBRI was developed on the basis of a TBI literature review and consensus meetings of an international consortium composed of 15 task force members (including neurosurgeons, neurologists, neuropsychologists, psychologists, and other health care professionals working in neuro- rehabilitation)
In 2002, constructed an initial item bank of 148 items, and then reduced the item set through two successive multicenter validation studies
In 2004-2006, the draft instrument was subsequently administered to 1528 persons after TBI across the centers collaborating in the QOLIBRI Task Force; Analysis and reduction of the initial 56 items based on psychometric criteria to a 49-item questionnaire consisting of seven scales
In 2006-2008, second international validation study with 921 participants with TBI

Bibliography

Bullinger, M., Azouvi, P., et al. (2002). "Quality of life in patients with traumatic brain injury-basic issues, assessment and recommendations." Restorative neurology and neuroscience 20(3-4): 111.

Bullinger, M. and Steinbuchel, N. (2001). "Quality of Life-measurement of outcome." CURRENT PROBLEMS IN EPILEPSY 16: 277-292.

Hawthorne, G., Kaye, A., et al. (2011). "Traumatic brain injury and quality of life: initial Australian validation of the QOLIBRI." Journal of clinical neuroscience: official journal of the Neurosurgical Society of Australasia 18(2): 197.

Steinbüchel, N., Petersen, C., et al. (2005). "Assessment of health-related quality of life in persons after traumatic brain injury—development of the Qolibri, a specific measure." Re-Engineering of the Damaged Brain and Spinal Cord: 43-49.

Truelle, J. L., Koskinen, S., et al. (2010). "Quality of life after traumatic brain injury: the clinical use of the QOLIBRI, a novel disease-specific instrument." Brain Injury 24(11): 1272-1291.

Truelle, J. L., Wild, K., et al. (2008). "The QOLIBRI-towards a quality of life tool after traumatic brain injury: current developments in Asia." Reconstructive Neurosurgery: 125-129.

von Steinbüchel, N., Wilson, L., et al. (2010). "Quality of Life after Brain Injury (QOLIBRI): scale development and metric properties." J Neurotrauma 27(7): 1167-1185.

von Steinbüchel, N., Wilson, L., et al. (2010). "Quality of Life after Brain Injury (QOLIBRI): scale validity and correlates of quality of life." J Neurotrauma 27(7): 1157-1165.

von Steinbuechel, N., Richter, S., et al. (2005). "Assessment of subjective health and health-related quality of life in persons with acquired or degenerative brain injury." Current opinion in neurology 18(6): 681-691.

Last Updated

Expertise, Instruction and Mentorship

Upcoming Stroke Course

Purpose

Link to Instrument

Cost

Cost Description

Diagnosis/Conditions

Number of Items

Required Training

Instrument Reviewers

ICF Domain

Professional Association Recommendation

Considerations

Standard Error of Measurement (SEM)

Test/Retest Reliability

Internal Consistency

Construct Validity

Content Validity

Bibliography

Iowa Scales of Personality...

Reading Comprehension Batt...

Contextual Memory Test