Introduction
Methods
Results
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 (%) |
---|---|---|---|---|---|---|---|---|
Storch et al. [30]/USA/University-based clinic | 59 | 11.4 (8–17)/69 | GTS or CTDs (48 % +ADHD; 42 % +OCD) | PedsQL (self- and proxy-rated)/Physical health; Psychosocial health; Emotional functioning; Social functioning; School functioning | Psychological; Social; School | Physical | Stronger parent–child agreement for QoL ratings in younger children (aged 8–11); Parent-rated school functioning likely overestimated due to co-morbid ADHD | 63 |
Cutler et al. [31]/UK/University-based clinic | 57 | 11.4 (8–17)/80 | GTS (32 % +ADHD; 18 % +OCD) | PedsQL (self-rated)/Physical health; Psychosocial health; Emotional functioning; Social functioning; School functioning | Physical; Psychological; Social; School | – | Children’s reports of struggling to fit into society’s expectations; Psychological domain linked to school due to bullying | 83 |
Pringsheim et al. [16]/USA and Canada/University-based clinic | 71 | 11.2 (7–17)/79 | GTS (56 % +ADHD; 41 % +OCD) | CHQ (proxy-rated)/Role limitation; Psychosocial score; Bodily pain; Physical summary; General health perception; Mental health; Self-esteem; Family activities | Social | Physical; Psychological | Impact on QoL linked to co-morbidities; Physical domain not affected in any clinical subgroup | 63 |
Bernard et al. [17]/USA/University-based clinic | 56 | 10.0 (5–17)/92 | GTS (64 % +ADHD; 9 % +OCD) | TACQOL-PF (proxy-rated)/Body functioning; Motor functioning; Autonomy; Cognitive function; Social relationships; Emotional functioning | – | Physical; Psychological; Social; Cognitive | QoL affected by co-morbid ADHD and OCD but not tic severity | 35 |
Hao et al. [32]/China/Paediatric Hospitals | 424 | −(8 to 12)/69 | GTS (−) | PedsQL (self-rated)/Physical health; Psychosocial health; Emotional functioning; Social functioning; School functioning | Physical; Psychological; Social; School | – | QoL in GTS worse than in controls, but better than in patients with leukaemia; GTS characterized by better social functioning but worse school and emotional functioning than migraine/epilepsy | 78 |
Eddy et al. [14]/Italy/University-based clinic | 50 | 13.0 (10–17)/88 | GTS (52 % +ADHD; 48 % +OCD) | YQOL-R (self-rated)/Relationships; Self; Environment; General | Physical; Psychological; Social | – | QoL differences in contextual items only; reduced social interaction and participation in activities; ‘Pure’ GTS more affected in environment domain, GTS + OCD in self/relationships domain | 73 |
Conelea et al. [33]/USA/Internet-based survey | 232 | 12.4 (10–17)/83 | GTS or CTDs (37 % +ADHD; 39 % +OCD) | PedsQL (self-rated); FIQ (proxy-rated); TSIS (self-rated)/Physical health; Psychosocial health; Emotional functioning; Social functioning; School functioning; Negative family impact | Psychological; Social; School | Physical | Family functioning highlighted as relevant to QoL | 80 |
Rizzo et al. [34]/Italy/University-based clinic | 100 | 16.0 (13–18)/86 | GTS (44 % +OCD; 3 % +ADHD + OCD) | YQOL-R (self-rated)/Relationships; Self; Environment; General | – | Physical; Psychological; Social | 10-year follow-up revealed co-morbidity shift (increased OCD; decreased ADHD) | 68 |
Cavanna et al. [19]/Italy/University-based clinic | 75 | 12.0 (6–18)/80 | GTS (8 % +ADHD; 33 % +OCD; 15 % +ADHD + OCD) | GTS-QOL-C&A (self-report)/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 (Italian language) | 85 |
Cavanna et al. [35]/Italy/University-based clinic | 75 | 12.0 (6–18)/80 | GTS (8 % +ADHD; 33 % +OCD; 15 % +ADHD + OCD) | CTIM-P (proxy-report)/School activities; Home activities; Social activities | Social; School | – | Significant differences between parent and child reports; Parents may overestimate impact of co-morbidities versus tics on QoL | 80 |
Liu et al. [36]/China/University-based clinic | 107 | 10.1 (−)/86 | GTS (8 % +ADHD; 32 % +OCD; 11 % +ADHD + OCD) | ISQL (self-rated)/Family life; Peer relationships; School life; Environment; Self-awareness; Experience of depression; Cognitive component | Psychological; Social; School; Cognitive | – | Influence of family stress and social withdrawal on QoL | 63 |
Rizzo et al. [37]/Italy/University-based clinic | 92 | 12.5 (7–17)/66 | GTS (22 % +ADHD; 22 % +OCD; 6 % +ADHD + OCD) | YQOL-R (self-rated)/Relationships; Self; Environment; General | Psychological; Social | Physical | Influence of emotional lability on QoL | 80 |
McGuire et al. [38]/USA/University-based clinic | 24 | 11.3 (7–17)/75 | GTS (42 % +ADHD; 38 % +OCD) | PedsQL (self-rated); CTIM-P (proxy-rated)/Physical health; Psychosocial health; Emotional functioning; Social functioning; School functioning; School activities; Home activities; Social activities | Physical; Psychological; Social; School | – | Differences in parent- and doctor-rated tic phenomenology | 78 |
Gutierrez-Colina et al. [39]/USA/GTS summer camp | 36 | 12.6 (8–18)/69 | GTS (58 % +ADHD; 47 % +OCD) | PedsQL (self-rated)/Physical health; Psychosocial health; Emotional functioning; Social functioning; School functioning | Physical; Psychological; Social; School | – | No assessment of tic severity | 68 |
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 |