COSMIN database

Epilepsy and quality of life in adults: a review of instruments

Leone, M. A., Beghi, E., Righini, C., Apolone, G., and Mosconi, P.
The aim of this report is to describe the state of the art of quality of life (QoL) instruments used for adults with epilepsy and to help those in the field to identify, select, and use the instruments most suitable for their purposes. We searched Medline and the Cochrane Database for articles in English, German, French, Spanish, Portuguese and Italian published by the end of 2002. Electronic retrieval was completed by hand-search. The final list included 203 articles reporting 205 studies. There were 62 validation studies and 143 clinical studies, including 7 population studies, 45 "pure" observational, 37 observational with aspects of validation and 54 experimental (38 randomized clinical trials and 16 non-randomized or non-controlled trials). Twenty-four generic and 21 specific QoL instruments were used. Eight were used in more than 10 studies, while 21 were used only once; 7/24 generic and 19/21 specific questionnaires were validated for epilepsy. The different domains considered in the 26 questionnaires specifically validated for epilepsy are listed. We classified questionnaires according to three aspects: validation, diffusion of use, and specificity of domains. Questionnaires covering all three aspects (WPSI, ESI-55, QOLIE-89, QOLIE-31, QOLIE-10, Liverpool Batteries) should be preferred when planning a QoL study in epilepsy. However, those covering only two aspects (SF-36, SEALS, EPSES, EOS, PESOS, QOLAS) could also be useful in selected situations or may become a first-choice instrument in the future, after more widespread use or complete validation. All the other instruments should at present be considered only for second choice.
Epilepsy Res
0920-1211 (Print)
Publication year:
General health perceptions / HRQoL:
Health-related quality of life
Overall quality of life:
Overall quality of life
Adults (18-65)
Seniors (65+)
Diseases of and symptoms related to the nervous system
PRO / non-PRO:
Patient Reported Outcome
Type of measurement instrument:
1 - Questionnaires
15D - 15 Dimensional Health-Related Quality Of Life Measure   
Beneficial effect of QoL
BPSE - Bonner psychosoziale skalen für epilepsie
Daily Quality of Life
EFA Concerns Index - Epilepsy Foundation of America (EFA) Concerns Index
EOS - Epilepsy Outcome Scale
EPSES - Epilepsy social effects scale
EQ-5D - EuroQoL-5 Dimensions   
ESI-55 - Epilepsy-Surgery Inventory 55 items
FEGEA - Ficha evolutiva global de epilepsia en el adulto
FSQ - Functional Status Questionnaire
GHQ - General Health Questionnaire (versions: original = GHQ-60; GHQ-12; GHQ-20; GHQ-28; GHQW-30; GHQ-36)
HAR - Hartshorn’s questionnaire
Hong Kong Chinese version WHO-quality of life measure (BREF)
HQLQ-E - Health related quality of life questionnaire for people with epilepsy
HUI-3 - Health Utilities Index-Mark 3
KAS - Katz Adjusted Scale
Life Satisfaction
Liverpool Assessment Battery
LSI - Life Satisfaction Index
NEWQOL - Quality of life in newly diagnosed epilepsy instrument
NHP - Nottingham Health Profile   
PESOS - Performance, subjective evaluation and socio-demographic data
PGWBI - Psychological General Well-Being index [alias: PGWB] (versions: PGWBI-S - short form)
PLC - Quality of life profile for Chronic Diseases
POMS - Profile of Mood States (versions: POMS-11; POMS-14; POMS-37; POMS-65; Brief POMS; POMS-Adolescent; POMS-sf; revised POMS)
PSDQ - Physical Self-Description Questionnaire
QLI - Quality of Life Index [alias: Ferrans and Powers Quality of Life Index]
QOLAS - Quality of Life Assessment Schedule
QOLIE-10 - Quality of Life in Epilepsy Inventory 10 items
QOLIE-31 - 31-item Quality of Life in Epilepsy Inventory
QOLIE-89 - Quality of Life in Epilepsy Inventory 89 items
QoL profile - Quality of Life profile
SEALS - Side effects and life satisfaction
SF-12 - 12-item Short Form Health Survey [alias: RAND-12]
SF-36 - 36-item Short Form Health Survey [alias: RAND-36][alias: Medical Outcomes Study (MOS) SF-36]]    |  | also see:
SHE - Subjective Handicap of Epilepsy
SIP - Sickness Impact Profile (versions: SIP-8; SIP-68; SIP-136; SIP-SV; UKSIP)   
SOGA - Soga’s questionnaire
SPQ - Social problems questionnaire
VAS - Health Status Visual Analog Scale
WBE - Well being and epilepsy
WHOQOL - World Health Organization Quality of Life Assessment (versions: WHOQOL-26)
WPSI - Washington psychosocial seizure inventory