The effect of Tourette syndrome on the young person and their family QoL and CGB – modified and updated from Robertson (2011)
QoL | ||||||
---|---|---|---|---|---|---|
Group/authors | Date of study | Country | Number and type subjects | Schedule/questionnaire | Results | Domains affected |
Storch et al43 | 2007 | USA | Youngsters | Self-rep; Parents rep | TS=reduced c/f healthy controls; TS=higher c/f psych controls | Tic severity |
Bernard et al2–6 19–21 | 2009 | USA | 58 youngsters | TACQOL | ADHD (inattention); not tics | |
Cutler et al45 | 2009 | UK | 57 youngsters | Self-report | Tic severity; ADHD; OCB | |
Hao et al46 | 2010 | China | 1335 (GTS and migraine) | Paediatric QoL inventory (Peds QL 4.0) | Patients scored lower than controls on all | Not stated |
Conelea et al47 | 2011 | USA | 232 | Internet-based survey with HRQoL | TS have functional impairment | Tic severity; comorbidity |
Eddy et al48 | 2011a | UK and Italy | 50 youngsters | YQOL-R | TS reduced QoL | Depression; OCD. ADHD |
Eddy et al49 | 2011b | UK and Italy | 50 youngsters | YQOL-R | TS reduced QoL | Even TS-only=reduced QoL; Tic severity; OCD; ADHD |
Caregiver burden/parental stress | ||||||
Cooper et al54 | 2003 | UK | 26 TS youngsters compared with 26 asthma youngsters | GHQ; CGB | Parents of youngsters with TS;=more CGB; =increased psychopathology | Only controlled study |
Lee et al55 | 2007 | Taiwan | 150 parents | PSI; SSIF | Parents of GTS children have considerable stress | GTS severity and family income affects parental stress most |
ADHD, attention deficit hyperactivity disorder; CGB, caregiver burden; GHQ, General Health Questionnaire; GTS, Gilles de laTourette syndrome; HROL-R, health related quality of life; OCB, obsessive-compulsive behaviour; OCD, obsessive-compulsive disorder; QoL, quality of life; PSI, Parent Stress Index Form; Rep, report; SSIF, Social Support Index Form; YQOL, The Youth Quality of Life Instrument-Research Version.