Pain in Tourette Syndrome-Children’s and Parents’ Perspectives

Małek, Agnieszka

doi:10.3390/jcm11020460

Cited by 7 publications

(6 citation statements)

References 33 publications

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“…Others have reported that approximately 60% of Tourette syndrome and tic disorder patients report pain with tics, and pain can be associated with significant tic-related disability. 30-32 Our findings provide additional, gender-specific information, with adolescent girls more likely to experience pain from their tics. Additional longitudinal studies are needed to probe specific impairments experienced by adolescents with painful tics.…”

Section: Discussionmentioning

confidence: 67%

Adolescent Gender Differences in Tic- and Non-Tic-Related Impairments in Tourette Syndrome

Larsh

Huddleston

et al. 2023

J Child Neurol

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We aimed to compare tic- and non-tic-related impairment experienced by adolescent girls and boys (ages 13 through 17) with Tourette syndrome and associations with age. We extracted from the electronic health record child and parental responses to the mini-Child Tourette Syndrome Impairment Scale (mini-CTIM) and other questionnaire data reflective of tic- and non-tic-related impairment of adolescents with Tourette syndrome presenting to our clinic over a 12-month period. We identified a total of 132 (49 female, 83 male) unique adolescent encounters. Mini-CTIM scores did not differ significantly between genders. Tic- and non-tic-related impairment were lower in older boys, but not older girls. Obsessive-compulsive symptoms correlated with parent-reported non-tic-related impairment experienced by adolescent girls but not boys. During adolescence, tic- and non-tic-related impairments may be less likely to improve with age in girls. Future longitudinal studies are needed to confirm this finding.

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Section: Discussionmentioning

confidence: 67%

Adolescent Gender Differences in Tic- and Non-Tic-Related Impairments in Tourette Syndrome

Larsh

Huddleston

et al. 2023

J Child Neurol

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“…Tic-related pain was shown to have a significant physical and psychological impact and was important to be addressed in the long-term management of tic disorders. A similar study was conducted in Poland ( Małek 2022 ) but this time in a pediatric population. The authors included 40 children with TS and 57 parents of children with TS, as they wanted to collect information about the perspective of children and parents on this topic.…”

Section: Resultsmentioning

confidence: 83%

Tourette syndrome research highlights from 2022

Hartmann,

Andrén,

Atkinson-Clément

et al. 2023

F1000Res

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“…Having long-standing tics is associated with a fourfold increased risk of death by suicide [ 18 ]. The impact of tics can be variable, affecting academic [ 19 ], social [ 20 – 22 ], occupational [ 19 ], and physical functioning due to pain [ 23 , 24 ]. Without adequate support, these factors can contribute to lower quality of life [ 1 ].…”

Section: Introductionmentioning

confidence: 99%

Patients’ experience of accessing support for tics from primary care in the UK: an online mixed-methods survey

Marino¹,

Khan²,

Groom³

et al. 2023

BMC Health Serv Res

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Background Tics are common in children and young people and may persist into adulthood. Tics can cause challenges with social, occupational, physical, and academic functioning. The current study explores the perceptions of adults with tics and parents/carers of young people with tics regarding their experience of accessing support from professionals in primary care in the UK. Methods Two online cross-sectional surveys were completed by 33 adults with tics and 94 parents/carers of children with tics. Participants were recruited across three online tic support groups. Tic specialist psychologists, academic researchers, and people with lived experience of tics provided feedback on the surveys before they were made available online. Mixed-method analyses were conducted on the surveys. Qualitative data from the free-text responses were analysed using thematic analysis and triangulated with quantitative findings where appropriate. Results While some participants felt supported by general practitioners (GPs), many felt dismissed. The impact of tics was not always explored, nor information on tics provided, during the consultation. Although 78.7% of participants were referred to secondary care for their tics, some struggled to get the referral. Within secondary care, most adult respondents were assessed by neurologists whilst young people were typically assessed by paediatricians or psychiatrists. Most of these secondary care clinicians did not specialise in tic disorders, with only 27.9% of participants being assessed by tic specialists. Mode waitlist time was 3–6 months for young people and longer for adult respondents. Some participants were referred to multiple secondary care services, spanning neurology, paediatrics, and psychiatry, with each stating that they do not provide support for tics. 21% of participants mentioned being discharged from secondary care with no ongoing support. Almost one-third of respondents accessed support within private healthcare. Conclusions Generally, more negative than positive experiences were reported. Possible contributing factors included a lack of clear tic referral pathways, long waitlists, a lack of information about tics provided in primary care appointments and a lack of support offered following diagnosis by secondary care services, together with poor access to tic specialist clinicians. This study highlights areas where improvements to UK services for tics can be made.

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Pain in Tourette Syndrome-Children’s and Parents’ Perspectives

Cited by 7 publications

References 33 publications

Adolescent Gender Differences in Tic- and Non-Tic-Related Impairments in Tourette Syndrome

Adolescent Gender Differences in Tic- and Non-Tic-Related Impairments in Tourette Syndrome

Tourette syndrome research highlights from 2022

Patients’ experience of accessing support for tics from primary care in the UK: an online mixed-methods survey

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