Health-related quality of life after traumatic brain
injury: Literature review
Suzanne Polinder, Juanita Haagsma, Ewout St...
Traumatic brain injury (TBI)
 TBI is defined as an injury to the brain induced by
external force
 TBI is considered “the...
Health-related quality of life (HRQL)
 HRQL is a concept that reflects an
individual’s perception of how an
illness and i...
Review - aims
To describe the up to date state of knowledge of HRQL measurement in
TBI patients:
 Evaluate the methodolog...
Review - methodology
Literature search in Medline (PubMed), Web of Science, and Embase.
Inclusion criteria
 TBI patients ...
Results I: flow diagram
Results II: Studies by age and HRQL instrument
0
5
10
15
20
25
30
35
40
children adults
Numberofstudies
SF-36 other instru...
Results III: HRQL instruments used
0
5
10
15
20
25
SF-36
PedsQL
EQ-5D SIP
WHOQOL(BREF)
PQOL
CHQ
QOLIBRI
Numberoftimesused
Results III: HRQL instruments used
0
5
10
15
20
25
SF-36
PedsQL
EQ-5D SIP
WHOQOL(BREF)
PQOL
CHQ
QOLIBRI
Numberoftimesused
...
Results IV: time points at which HRQL in TBI was assessed
0
5
10
15
20
25
Pre-injury Baseline /
discharge
3weeks /
1month
...
Results - SF-36: comparison of 8 dimensions
PF physical functioning
RP role limitation due to
physical health
BP bodily pa...
Results – SF-36: Random effect meta-analysis
physical component summary (PCS) and mental
component summary (MCS)

PCS
35 ...
Conclusions
 45 studies with varying methodological approaches and quality →
Hampered comparability.
 The SF-36 is the m...
Recommendations
 Development of guidelines for the measurement of HRQL in TBI
would facilitate comparability across studi...
Validity studies of HRQL instruments in TBI
1
st
author, year,
reference
HRQL
instrument
Country Study population2
Assessm...
Validity studies of HRQL instruments in TBI
Validity SF-36 based on 3 studies
 The three studies measuring validity of SF...
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Health-related quality of life after traumatic brain injury: Literature review

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GHME 2013 Conference
Session: Global and national Burden of Disease II
Date: June 17 2013
Presenter: Suzanne Polinder
Institute:
University of Medical Center Rotterdam

Published in: Health & Medicine
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  • The current systematic review and quality assessment was conducted to describe the up to date state of knowledge in this field, with the aspiration to contribute to further consensus development on preferred methodologies of HRQL measurement within the TBI research field. Therefore, we will: I) evaluate the methodology of studies measuring HRQL in TBI patients; II) provide a narrative overview of HRQL of the most frequently used HRQL instrument(s) in TBI patients to gain insight into general recovery patterns and residual disability; and III) evaluate measurement properties of HRQL instruments used in TBI patients.
  • The SF-36 was designed to measure self perceived quality of life across eight domains.
  • considerable methodological variation between studies, including different instruments, mixture of study population, follow-up periods and timings of assessment. Assessment time points ranged from baseline to 24 years post-TBI and 18 different HRQL instruments were used.
  • An instrument or combination of instruments including key problem areas of TBI patients is needed to assess the full impact of TBI on HRQL. We recommend using a combination of a generic measure (SF-36) with a disease specific measure (QOLIBRI). Development of guidelines for the measurement of HRQL in TBI with validated instruments would facilitate comparability across studies which would produce improved estimates of TBI disability and recovery patterns. For further consensus on a common core of HRQL measures within the TBI research field high quality validity studies of HRQL instruments should be assessed including information on reliability, validity and responsiveness. Consistently collected empirical data on HRQL in TBI across countries would support the production of more valid burden of injury calculations, cost-effectiveness analyses of clinical practice and trauma care, and support continuous quality improvement of care.
  • Health-related quality of life after traumatic brain injury: Literature review

    1. 1. 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
    2. 2. 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
    3. 3. 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
    4. 4. 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
    5. 5. 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.
    6. 6. Results I: flow diagram
    7. 7. Results II: Studies by age and HRQL instrument 0 5 10 15 20 25 30 35 40 children adults Numberofstudies SF-36 other instrument
    8. 8. Results III: HRQL instruments used 0 5 10 15 20 25 SF-36 PedsQL EQ-5D SIP WHOQOL(BREF) PQOL CHQ QOLIBRI Numberoftimesused
    9. 9. Results III: HRQL instruments used 0 5 10 15 20 25 SF-36 PedsQL EQ-5D SIP WHOQOL(BREF) PQOL CHQ QOLIBRI Numberoftimesused 1 instrument: n = 35 studies 2 instruments: n = 7 studies >2 instruments: n = 3 studies
    10. 10. Results IV: time points at which HRQL in TBI was assessed 0 5 10 15 20 25 Pre-injury Baseline / discharge 3weeks / 1month 3months 6months 1year 1-3years 3-5years 5-10years >10years Time points Numberoftimesused
    11. 11. 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-36domainscore Colantonio et al EmanuelsonI,et al Brownet al TombergT,et al Lippert-Gruener et al Heitger MH,et al Lee,BOet al LimaDP et al Andelic N,et al 2009 NestvoldK Andelic 2010 JacobssonLJ,et al Arango-LasprillaJC,et al BeseogluK,et al HuXB,et al VanBaalen Random effect weightedmean
    12. 12. 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
    13. 13. 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.
    14. 14. 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).
    15. 15. Validity studies of HRQL instruments in TBI 1 st 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.)
    16. 16. 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.

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