Health-related quality of life after traumatic brain injury: Literature review

Suzanne Polinder, Juanita Haagsma, Ewout Steyerberg, Ed van Beeck

GHME conference, June 17th 2013

s.polinder@erasmusmc.nl

Erasmus MC Rotterdam, The Netherlands

Traumatic brain injury (TBI)

TBI is defined as an injury to the brain induced by

external force

TBI is considered “the most complex disease in

our most complex organ”.

Large heterogeneity in terms of external cause,

mechanisms, pathology, severity, and prognosis

TBI results in significant mortality and long term

disability

Health-related quality of life (HRQL)

HRQL is a concept that reflects an

individual’s perception of how an

illness and its treatment affect life

HRQL instruments are necessary

to quantify the burden of TBI and

functional impairment in survivors

Generic or disease specific

Review - aims

To describe the up to date state of knowledge of HRQL measurement in

TBI patients:

Evaluate the methodological quality of studies measuring HRQL in TBI

patients

Provide a narrative overview of HRQL of the most frequently used HRQL

instrument(s) in TBI patients

Evaluate methodological quality of HRQL instruments used in TBI

patients

Review - methodology

Literature search in Medline (PubMed), Web of Science, and Embase.

Inclusion criteria

TBI patients suffering from any type and cause of trauma and any degree

of severity (mild, moderate, severe);

Generic or disease specific HRQL as outcome measure;

Published in the period 1991-2012;

Randomized controlled trials, cohort studies, case control studies, clinical

trial, and validation studies of HRQL instruments;

Full abstract available, original article, peer reviewed, English-language

publication.

Results I: flow diagram

Results II: Studies by age and HRQL instrument

0

5

10

15

20

25

30

35

40

children adults

Num

ber

of s

tudi

es

SF-36 other instrument

Results III: HRQL instruments used

0

5

10

15

20

25

SF-36PedsQL

EQ-5D SIP

WHOQOL(BREF)PQOL

CHQQOLIBRI

Num

ber

of ti

mes

use

d

Results III: HRQL instruments used

0

5

10

15

20

25

SF-36PedsQL

EQ-5D SIP

WHOQOL(BREF)PQOL

CHQQOLIBRI

Num

ber

of ti

mes

use

d 1 instrument: n = 35 studies2 instruments: n = 7 studies >2 instruments: n = 3 studies

Results IV: time points at which HRQL in TBI was assessed

0

5

10

15

20

25

Pre-injury Baseline /discharge

3 weeks /1month

3 months 6 months 1 year 1-3 years 3-5 years 5-10 years >10 years

Time points

Num

ber o

f tim

es u

sed

Results - SF-36: comparison of 8 dimensions

PF physical functioning

RP role limitation due to physical health

BP bodily pain

GH general health

VT vitality

SF social functioning

RE role limitation due to emotional problems

MH mental health

30

40

50

60

70

80

90

100

PF RP BP GH VT SF RE MH

SF-3

6 do

mai

n sc

ore

Colantonio et al

Emanuelson I, et al

Brown et al

Tomberg T, et al

Lippert-Gruener et al

Heitger MH, et al

Lee, BO et al

Lima DP et al

Andelic N, et al 2009

Nestvold K

Andelic 2010

J acobsson LJ , et al

Arango-Lasprilla J C, et al

Beseoglu K, et al

Hu XB, et al

Van Baalen

Random effect weighted mean

Results – SF-36: Random effect meta-analysis physical component summary (PCS) and mental component summary (MCS)

PCS

35 40 45 50 55

Corrigan

Paniak et al

Emanuelson et al

Brown et al

Lippert-Gruener et al

Nestvold K

Hawthorne et al

Anedelic 2010*

Jacobsson et al

Ponsford

Sasse

RE meta-analysis mean

MCS

35 40 45 50 55

Corrigan

Paniak et al

Emanuelson et al

Brown et al

Lippert-Gruener et al

Nestvold K

Hawthorne et al

Anedelic 2010*

Jacobsson et al

Ponsford

Sasse

RE meta-analysis mean

Conclusions

45 studies with varying methodological approaches and quality →

Hampered comparability.

The SF-36 is the most widely used HRQL instrument to estimate

quality of life of patients with TBI.

The outcomes of the SF-36 dimensions of the separate studies were

quite heterogeneous, although following the same patterns.

TBI patients especially reported low scores for role limitations-

physical and -emotional, and social functioning.

Recommendations

Development of guidelines for the measurement of HRQL in TBI would facilitate comparability across studies.

Improved estimates of TBI disability and recovery patterns.

We recommend using a combination of a generic measure (SF-36) with a disease specific measure (QOLIBRI).

Validity studies of HRQL instruments in TBI

1st author, year, reference

HRQL instrument

Country Study population2 Assessment time points

Findler, 2001 SF-36 USA n=326 (M: 60%). RR: n.a. Age: 16-64 (mean: 34).

Variable: at least 1 year post-injury

MacKenzie, 2002 SF-36 USA n=1230 (M: 66%). RR: 78% Age: 18-59 (mean: n.a.)

1 year post-injury

Guilfoyle, 2010 SF-36 United Kingdom n=456 (M: 76%). RR: 88% Age: 18+ (mean: 37)

Between 1 and 24 months after TBI (mean 6 months)

Von Steinbuechel, 2010 QOLIBRI Belgium, Finland, France, Italy, Netherlands, UK, USA, Australia and Germany

n=573 (M: 72%). RR: 62% Age: 15+ (mean: 39)

between 3 months to 15 years post-injury (mean: 5 years)

Von Steinbuechel, 2012 QOLIBRI-OS Germany n=153 (M: 67%). RR: 62% Age: 15+ (mean: 39)

between 3 months to 15 years post-injury (mean: 5 years)

Teasdale, 1997 EBIQ Belgium, Finland, France, Italy, Netherlands, UK, USA, Australia and Germany

n=258 (M: 62%). RR: n.a. Age: 16-93 (mean: 48)

Mean 31.8 months post- injury

Thomas-Stonell, 2006 CHQ Canada n=33 (M: 67%). RR: n.a. Age: 4-18 (mean: 13)

during admission and follow-up - 11-150 days (mean: 38 days)

Chiu, 2006 WHOQOL-BREF

Taiwan n=199 (M: 64%). RR: 56% Age: (mean: 45)

Discharge (mean: n.a.)

Validity studies of HRQL instruments in TBI

Validity SF-36 based on 3 studies

The three studies measuring validity of SF-36 in TBI were

methodological sound studies.

Internal consistency: moderate positive evidence for all SF-36 scales

(Cronbach’s alpha = 0.68–0.92).

Interpretability: floor effects in 2 and ceiling effects in 4 domains.

Differences for subgroups (e.g mild and severe TBI) can be detected.

Structural validity and responsiveness: no information.