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

Marino, Christina; Khan, Kareem; Groom, Madeleine J.; Hall, Sophie S.; Anderson, Seonaid; Mcnally, Emma; Murphy, Tara; Hall, Charlotte L.

Abstract

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.

Citation

Marino, C., Khan, K., Groom, M. J., Hall, S. S., Anderson, S., Mcnally, E., Murphy, T., & Hall, C. L. (2023). Patients’ experience of accessing support for tics from primary care in the UK: an online mixed-methods survey. BMC Health Services Research, 23, Article 788. https://doi.org/10.1186/s12913-023-09753-5

• Journal Article Type: Article
• Acceptance Date: Jun 26, 2023
• Online Publication Date: Jul 24, 2023
• Publication Date: Jul 24, 2023
• Deposit Date: Jul 5, 2023
• Publicly Available Date: Jul 24, 2023
• Journal: BMC Health Services Research
• Electronic ISSN: 1472-6963
• Publisher: Springer Verlag
• Peer Reviewed: Peer Reviewed
• Volume: 23
• Article Number: 788
• DOI: https://doi.org/10.1186/s12913-023-09753-5
• Keywords: Tourette syndrome, UK, GP, Young people, Adults, Primary care, Online survey, Tics
• Public URL: https://nottingham-repository.worktribe.com/output/22719256
• Publisher URL: https://bmchealthservres.biomedcentral.com/articles/10.1186/s12913-023-09753-5
• Additional Information: Received: 22 February 2023; Accepted: 26 June 2023; First Online: 24 July 2023; : ; : This project received ethical approval from the Division of Psychiatry and Applied Psychology Research Ethics Committee for the University of Nottingham, UK (Reference number: 2891). All participants gave informed, written consent prior to their participation in this study. All methods were performed in accordance with the relevant guidelines and regulations.; : Not applicable.; : The authors declare that they have no competing interests.