Riann Alexander
Anglia Ruskin University

Research title: Caregiver Burden in PANS/PANDAS: The Role of Family Accommodation, Symptom Severity and Flare Status.

Abstract:

This study examined caregiver burden in families of children with Paediatric Acute-onset Neuropsychiatric Syndrome (PANS) and Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS). Family accommodation, where caregivers change their behaviour or routines in response to a child’s symptoms, has been consistently linked to greater caregiver burden in paediatric OCD and anxiety (Lebowitz et al., 2013). These relationships remain largely unexplored in PANS/PANDAS, where episodic flares and diagnostic uncertainty may shape family responses differently. 

The study investigated whether child symptom severity and family accommodation predicted caregiver burden in a UK sample of parents and caregivers of children with PANS/PANDAS, and whether these relationships differed by the child’s current flare status. Parents and caregivers completed an anonymous online survey using validated measures of symptom severity, accommodation, and burden. 

Both symptom severity and family accommodation predicted caregiver burden, with family accommodation emerging as the strongest predictor. Caregivers of children currently in a flare reported significantly higher accommodation, symptom severity, and burden than those between flares. In OCD, accommodation is understood to sustain a negative reinforcement cycle, where accommodating temporarily reduces distress but maintains symptoms. No study has yet examined whether the same applies in PANS/PANDAS, where symptoms are thought to reflect an active neuroinflammatory process, leaving parents with little guidance on when accommodating symptoms may help, or may do more harm than good. 

These findings suggest that family accommodation could be a key target for intervention in PANS/PANDAS, but any such approach should account for flare status and timing to benefit both parents and children. Existing parent-led interventions to reduce accommodation, developed for OCD, should be adapted for PANS/PANDAS, where symptoms can fluctuate acutely and children may be too unwell during flares to engage in treatment. Such interventions should be offered alongside dedicated caregiver support, which is currently largely absent for UK families. 

Reference: 

Lebowitz, E. R., Woolston, J., Bar-Haim, Y., Calvocoressi, L., Dauser, C., Warnick, E., Scahill, L., Chakir, A. R., Shechner, T., Hermes, H., Vitulano, L. A., King, R. A., & Leckman, J. F. (2013). Family accommodation in pediatric anxiety disorders. Depression and Anxiety, 30(1), 47-54. https://doi.org/10.1002/da.21998

Tia Chahal
University of Leeds

Research title: Exploring Parents’ and Carers’ Experiences of the Diagnostic Journey and Psychosocial Impact of Caring for a Child with PANS/PANDAS in the UK.

Abstract:

This ongoing doctoral research as part of the DClinPsy programme at the University of Leeds investigates how parents and caregivers in the UK experience the diagnostic journey for a child with PANS/PANDAS and how this journey impacts their emotional wellbeing, family relationships and everyday life. The study focuses on experiences before, during and after diagnosis, including early symptom recognition, help-seeking, interactions with healthcare and education professionals, experiences of uncertainty, and access to support. 

A qualitative design is being used, informed by a critical realist perspective. Approximately 10–14 parents or carers of a child or young person aged 0–21 with a formal UK diagnosis of PANS or PANDAS will have been recruited. Participants were invited to take part in an individual or joint semi-structured interview conducted online via Microsoft Teams. Interviews explored the onset of difficulties, routes to diagnosis, encounters with services, the meaning of receiving a diagnosis, ongoing uncertainty and the wider psychosocial impact on carers and families. 

Data will be analysed using Braun and Clarke’s Reflexive Thematic Analysis. The study is also sensitised by the Transactional Model of Stress and Coping and the concept of Epistemic Injustice, which may help illuminate how families make sense of uncertainty, respond to prolonged stress, and experience being believed, dismissed or excluded from decision making. 

At the time of the symposium, data collection will have recently concluded and analysis will be underway. The presentation will therefore provide an overview of the study protocol, recruitment and data collection process, key methodological decisions, and early reflections arising from engagement with participants. The research aims to develop a detailed, family-centred understanding of the diagnostic journey and its consequences, identify barriers and facilitators across services, and inform future clinical practice, professional education, support provision and research priorities for families affected by PANS/PANDAS in the UK, while ensuring their experiences are represented in developing pathways and policy. 

References 

Braun, V., & Clarke, V. (2021). One size fits all? What counts as quality practice in reflexive thematic analysis? Qualitative Research in Psychology, 18(3), 328–352. 
Fricker, M. (2007). Epistemic injustice: Power and the ethics of knowing. Oxford University Press. 
Lazarus, R. S., & Folkman, S. (1984). Stress, appraisal, and coping. Springer. 

Hayley Gilfillian University of Dundee and Megan Parks University of Bristol

Research title: Clinical symptom profiles in PANS: Differences by age group and family history from the PPUK Lived Experience survey. 

Abstract:

The aim of this study was to establish a clearer understanding of the symptom profiles of children with PANS and PANDAS in the UK, using data collected in a national survey by PANS PANDAS UK in January and February of 2026. The survey was completed by 422 parents and carers across the UK with children who have a confirmed or suspected diagnosis of PANS or PANDAS, as well as 7 young adults with the condition.

Survey responses were summarised using descriptive statistics, and categorical data analysis was carried out to assess symptom co-occurrence and compare symptom profiles between age groups. 384 out of 422 respondents (55.7% female, 44% male) provided demographic data, with onset age ranging 2-19+ years, a wide UK geographic representation, and 85.9% identified as White British. Among 335 symptom responses, anxiety (90.15%), OCD symptoms (82.99%), and emotional lability (81.79%) were most prevalent. Comparing children with symptom onset ≤7 years (n=179) versus ≥8 years (n=184), enuresis was significantly more common in the younger group (OR=1.74, 95% CI 1.13-2.69). The older group showed significantly higher prevalence of depression (OR=0.59, 0.39-0.9) and OCD symptoms (OR=0.54, 0.34-0.86), particularly contamination obsessions (OR=0.55, 0.36-0.83) and checking compulsions (OR=0.58, 0.38-0.89). No other symptoms differed significantly between age groups, including features such as handwriting changes and pupil dilation.

These findings suggest that while core PANS/PANDAS symptom profiles are broadly consistent across childhood, certain symptoms become more prevalent with age, with potential implications for age-tailored clinical recognition and management. Furthermore, family history of neurological, psychiatric, autoimmune, and inflammatory conditions was associated with increased prevalence of certain neuropsychiatric symptoms. Similarly, pre-existing ADHD, autism and anxiety were also associated with specific symptom profiles, including increased rates of tics, OCD, behavioural symptoms, emotional lability, and depression. This study will inform other UK-based clinical studies, including prospective and experimental designs. 

Maisy Higgs
University of Oxford

Research title: Investigating abnormal immune responses in post-infection conditions using Raman microscopy 

Abstract:

Raman microscopy can provide metabolic fingerprints and structural
information from biological samples, which requires only a small amount of material, making it valuable for research in a PANS cohort. Previous work in the Morten lab on ME/CFS identified significant differences in the Raman spectra of peripheral blood mononuclear cells (PBMCs) from patients with ME/CFS compared with matched healthy controls, supporting the development of a blood cell-based diagnostic test (Xuet al. 2023). The use of Raman microscopy to investigate immune cells has now been expanded to other post-infection conditions, with a new focus on PANS. PANS literature has highlighted B cells, neutrophils, and T cells as potentially having important roles in the recurrent flare-ups associated with PANS. Ongoing T-cell and B-cell activity against self-antigens has been suggested as a possible mechanism for the condition (Frankovich et al. 2017). This project aims to establish baseline Raman spectra for specific immune cell types from healthy controls, providing a reference against which samples from PANS patients can be compared. This may allow abnormal immune-cell signatures to be identified and provide evidence of possible immune mechanisms involved in PANS. Negative selection and immunofluorescence have been utilised to isolate and identify these immune cell types and obtain clean Raman spectra at baseline and following LPS treatment. Initial results suggest spectral differences between immune cell types. The resulting spectra are analysed to identify metabolic and structural features characteristic of each cell type and to establish features that can be used for comparison with PANS samples. This work with healthy controls is to
establish clear protocols and preliminary data that will be a strong point of comparison when Raman microscopy of PANS patient samples is conducted.

References
Xu, J. et al. (2023) ‘Developing a Blood Cell-Based Diagnostic Test for Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome Using Peripheral Blood Mononuclear
Cells’, Advanced Science, 10(30), p. e2302146. Available at:
https://doi.org/10.1002/advs.202302146.
Frankovich, J. et al. (2017) ‘Clinical Management of Pediatric Acute-Onset
Neuropsychiatric Syndrome: Part II—Use of Immunomodulatory Therapies’, Journal of Child and Adolescent Psychopharmacology, 27(7), pp. 574–593. Available at:
https://doi.org/10.1089/cap.2016.0148

Eleanor Tobelem
University of Dundee

Research title: Increasing PANS and PANDAS awareness 

Abstract:

Paediatric Acute-Onset Neuropsychiatric Syndrome (PANS) is characterised by the abrupt onset of obsessive-compulsive disorder alongside at least two additional neuropsychiatric symptoms, such as developmental regression, emotional lability, or sleep disturbances ​¹​. Although the mechanisms remain unclear, current hypotheses point to post‑infectious inflammation, genetic susceptibility, and developmental or environmental contributors​²​. Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections (PANDAS) is a subset of PANS linked specifically to Group A Streptococcal infections​³​.  

Accurate prevalence data for PANS/PANDAS are lacking, especially in the UK, but the physical, emotional, and social impact on affected children and their caregivers is significant​⁴​. PANS PANDAS UK​⁵​, a charity supporting families, produced a Lived Experience Report capturing the severe challenges faced. Parents describe abrupt behavioural changes in their children, repeated dismissal by healthcare professionals, and the need to seek private care despite financial strain​^1,4​.  

The acute onset and relapsing–remitting nature of these conditions lead to substantial health deterioration and highly variable long‑term outcomes. Caregivers frequently report stress, anxiety, and depression at levels exceeding clinical concern​²​.  

Although international guidelines exist​⁶​, limited awareness in primary care hampers early recognition and management. In April 2024, the PANS PANDAS Steering Group began developing NHS‑specific guidelines under RCPCH oversight​⁷​. NICE has since agreed to review and signpost to them if they meet standards for collaborative, robust, evidence‑based development​⁷​. With publication expected in October 2026, increasing clinician awareness now is essential to improving outcomes for future patients.

References
1. Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS): Clinical Report. Pediatrics 155, (2025). 

​2. Lepri, G. et al. Clinical-Serological Characterization and Treatment Outcome of a Large Cohort of Italian Children with Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infection and Pediatric Acute Neuropsychiatric Syndrome. J. Child Adolesc. Psychopharmacol. 29, 608–614 (2019). 

​3. Ma, M. et al. Development of Autoimmune Diseases Among Children With Pediatric Acute-Onset Neuropsychiatric Syndrome. JAMA Netw. Open 7, e2421688–e2421688 (2024). 

​4. O’Dor, S. L. et al. A Survey of Demographics, Symptom Course, Family History, and Barriers to Treatment in Children with Pediatric Acute-Onset Neuropsychiatric Disorders and Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections. J. Child Adolesc. Psychopharmacol. 32, 476–487 (2022). 

​5. PANS PANDAS UK. https://panspandasuk.org/. 

​6. Pfeiffer, H. C. V. et al. Clinical guidance for diagnosis and management of suspected Pediatric Acute-onset Neuropsychiatric Syndrome in the Nordic countries. Acta Paediatr. 110, 3153–3160 (2021). 

​7. Guidelines – PPSG. https://theppsg.org.uk/guidelines/. 

Archana Bhattacharyya
The London School of Economics and Political Science

Research title: The Economic Impact of PANS/PANDAS in the United Kingdom. 

Abstract:

Background: Pediatric acute-onset neuropsychiatric syndrome (PANS) and pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections (PANDAS) are often mistaken for other psychiatric illnesses, and a lack of awareness about these conditions leads to significant delays in diagnosis and treatment in the UK. As a result, affected children and their families face persistent barriers in accessing care through the NHS. It pushes them to seek private medical care and visit multiple healthcare professionals for a diagnosis, leading to high economic costs for the health and social care sector. 

Objective: To understand the economic impact of PANS and PANDAS within the UK by exploring direct and indirect resource utilisation across the health and social care sector. 

Methods: Secondary survey data was used for this study, and unit costs for each resource were estimated. Descriptive analysis was conducted in Stata to summarise resource utilisation across inpatient, community and emergency care settings.  

Results: The total annual direct cost was £1.363,761, with annual community care costs being the highest at £557,041. 194 participants out of 238 households had to reduce working hours and 107 out of 211 households had one adult that was forced to leave employment altogether to care for the child. No difference was found in financial impact between households where the child received treatment within one year of onset of symptoms and those who had to wait for more than a year. 10% of the participants were responsible for 66% of all annual direct costs.  

Conclusion: Lack of awareness and unclear diagnostic and treatment guidelines in PANS and PANDAS incur a high financial cost for affected families as well as the health and social care sector in the UK.