Table 2.
Summary of published studies investigating QoL in adults with GTS or other CTDs
| Study/Country/Setting | n | Mean age (range)/Male gender (%) | Diagnosis (% co-morbidity) | QoL instrument (type)/subscales | QoL domains most affected | QoL domains least affected | Other findings | Quality score (%) |
|---|---|---|---|---|---|---|---|---|
| Elstner et al. [40]/UK/University-based clinic | 103 | 29.0 (16–54)/68 | GTS (21 % +OCD) | QOLAS (self-rated); SF-36 (self-rated)/Social functioning; Role limitation —emotional; Mental health; Cognitive functioning; Economic; Physical functioning; Role limitation —physical; Pain | Physical; Psychological; Social; Occupational; Cognitive | – | Reported difficulty in making/maintaining relationships; Effects of tics on employment status | 63 |
| Cavanna et al. [20]/UK/National TSA recruitment | 136 | 25.9 (−)/72 | GTS (51 % +ADHD; 32 % +OCD) | GTS-QOL (self-rated)/Physical domain; Psychological domain; Obsessional domain; Cognitive domain | Physical; Psychological; Obsessional; Cognitive | – | Development and validation of first disease-specific QoL scale for adults with GTS | 73 |
| Muller-Vahl et al. [15]/Germany/University-based clinic | 200 | 35.0 (18–75)/75 | GTS (–) | EQ-5D (self-rated)/Self-care; Usual activities; Pain and discomfort; Anxiety and depression; Mobility | Physical; Psychological | Physical (mobility only) | Higher anxiety/depression ratings compared to general population | 75 |
| Conelea et al. [41]/USA/Internet-based study | 672 | 35.0 (18–77)/59 | GTS or CTDs (23 % +ADHD; 35 % +OCD; 28 % +affective dis) | PQOL (self-rated); TSIS (self-rated)/Physical interference Social interference Cognitive health Occupational interference Psychological interference |
Physical; Psychological; Social; Occupational; Cognitive |
– | Impact of tics on occupation (7 % quit job; 13 % did not pursue job advancement) | 85 |
| Jalenques et al. [42]/France/Postal questionnaires | 167 | 29.0 (16–68)/74 | GTS (–) | WHOQOL-26 (self-rated); FSQ (self-rated)/Physical health; Psychological health; Social relationships; Environment; Physical functioning – ADL; Mental health; Work performance | Physical; Psychological; Social; Occupational |
– | Impact of depression on QoL; quality of social interactions rated as very poor | 78 |
| Cavanna et al. [43] /UK/University-based clinic | 46 | 24.0 (16–41)/89 | GTS (54 % +ADHD; 30 % +OCD) | GTS-QOL (self-rated)/Physical domain; Psychological domain; Obsessional domain; Cognitive domain | Physical; Psychological; Obsessional; Cognitive |
– | Childhood tic severity and family history of tics as predictors of poor QoL in adulthood | 85 |
| Crossley et al. [44]/UK/University-based clinic | 72 | 26.0 (16–64)/65 | GTS (22 % +ADHD; 18 % +OCD) | GTS-QOL (self-rated)/Physical domain; Psychological domain; Obsessional domain; Cognitive domain | Physical; Psychological; Obsessional; Cognitive |
– | Impact of sensory phenomena on QoL | 88 |
QoL quality of life, GTS Gilles de la Tourette syndrome, OCD obsessive–compulsive disorder, ADHD attention-deficit and hyperactivity disorder, CTDs chronic tic disorders, QOLAS quality of life assessment schedule, SF-36 Medical outcomes study 36-item short-form health survey, GTS-QOL Gilles de la Tourette syndrome-quality of life scale, PQOL perceived quality of life scale, TSIS Tourette syndrome impact survey, WHOQOL-26 World Health Organisation quality of Life 26-item scale, FSQ functional status questionnaire, ADL activities of daily living