Study finds children with Sydenham’s chorea often face lasting psychiatric challenges

A new study by researchers from the University of Glasgow, United Kingdom, and the Gillberg Neuropsychiatry Centre, University of Gothenburg, Sweden has revealed that children diagnosed with the rare post-streptococcal movement disorder Sydenham’s chorea (SC) often experience serious psychiatric symptoms that can persist for years, underscoring the need for long-term, multidisciplinary care.

The research, published in Acta Paediatrica, followed 12 Scottish children (seven girls and five boys) who were diagnosed with Sydenham’s chorea between 2009 and 2012. At the time of the interviews, the children were aged 10 to 15 years, and on average, six years had passed since their first symptoms appeared.

A rare disease with complex symptoms

Sydenham’s chorea—once common but now rare in Western Europe—is caused by an autoimmune reaction to group A streptococcal infection, the same bacteria responsible for strep throat and rheumatic fever. The condition leads to involuntary, jerky movements, as well as problems with speech, swallowing, and walking.

But the study shows that for many children, the physical symptoms are only part of the story. Nearly all participants also developed significant psychiatric or developmental disorders, with anxiety and attention deficit/ hyperactivity disorder (ADHD) among the most common.

“Many of these children faced enormous challenges—not only physically, but emotionally and mentally,” said Professor Christopher Gillberg, lead researcher and Professor of Child and Adolescent Psychiatry at the Gillberg Neuropsychiatry Centre, Sweden , “Their symptoms often overlapped, and treatment required coordination between neurologists, psychiatrists, cardiologists, and therapists.”

Inside the study

Researchers identified cases through the Royal Hospital for Sick Children in Glasgow. Each family took part in in-depth interviews and assessments, using a semi-structured psychiatric interview called the Kiddie Schedule for Affective Disorders and Schizophrenia (K-SADS-PL), based on DSM-IV diagnostic criteria.

Families were asked to describe the timeline of symptoms, family history, and experiences with healthcare services. The interviews explored both current and past psychiatric conditions, and video examinations were used to check for ongoing signs of chorea.

Early struggles and delayed diagnoses

Seven of the 12 children had already shown neurodevelopmental difficulties, such as delayed speech or learning problems, before developing Sydenham’s chorea. Four also had separation anxiety before their first physical symptoms appeared.

Once the illness began, diagnoses were often delayed—sometimes by as much as two years. Half of the children required wheelchairs or walking aids at some point, and all received penicillin to prevent rheumatic heart disease.

The delay in diagnosis added stress for families, the researchers noted. “Parents often felt helpless,” said Professor Christopher Gillberg. “In several cases, symptoms were initially dismissed as viral infections or even mistaken for behavioural issues.”

Psychiatric disorders

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At the time of their diagnosis, 10 of the 12 children met criteria for at least one psychiatric disorder.

• Anxiety disorders affected most participants: generalised anxiety in six, and separation anxiety in eight.
• ADHD was diagnosed in seven children—each of whom also had anxiety.
• Depression and obsessive-compulsive disorder (OCD) were less common but still significant.
• Hallucinations and psychotic symptoms were seen in two children during acute phases of illness.

Over the course of the study, 11 out of 12 children experienced multiple psychiatric diagnoses at some point, and nine had relapses, often marked by both movement and emotional symptoms.

For three children, psychiatric symptoms such as panic attacks, OCD, or phobias appeared even after the physical signs of chorea had subsided.

Educational and social impacts

Most children faced disruption to their education, requiring extra support from teachers and psychologists. Over half reported being bullied, which increased their school-related anxiety and absenteeism. Some continued to experience mild chorea years later, while others struggled with lingering anxiety or attention problems.

Treatment and follow-Up

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The children received a mix of treatments:

• Penicillin prophylaxis to prevent rheumatic heart disease
• Sodium valproate to control chorea in eight children
• Antidepressants or antipsychotics in a few cases
• Therapies such as physiotherapy, speech and language, occupational, and play therapy

Almost all families engaged with multiple services—from cardiology and rheumatology to mental health clinics—reflecting the wide-ranging nature of the disorder.

High relapse rates and family impact

Relapses were reported in three-quarters of the children, a higher rate than typically seen in medical literature. Some relapses involved mainly psychiatric symptoms, while others included movement problems or joint pain.

Family histories revealed that three families had relatives with rheumatic fever, while nine reported psychiatric disorders, most commonly depression. Mothers often described experiencing depression themselves, sometimes linked to the stress of caring for a chronically ill child.

Call for better awareness and early intervention

The researchers argue that better awareness among clinicians could prevent delays in diagnosis and improve outcomes. They emphasise the importance of joined-up care between neurology, psychiatry, and education services.

“Swift recognition of Sydenham’s chorea can make a real difference,” said one of the leading authors, Professor Christopher Gillberg. “These children need more than antibiotics—they need emotional support, educational understanding, and coordinated follow-up care.”

Insights into a rare condition

While the study’s small sample size limits generalisation, it offers rare insight into how this historically significant disease continues to affect children in modern healthcare systems.

“Sydenham’s chorea may be rare in Western Europe,” Professor Gillberg said, “but for the families affected, the impact is profound and long-lasting.”

Mushet N, Morton M, Minnis H, Gillberg C. Children With Sydenham Chorea and Psychiatric Disorders Had Variable Long-Term Outcomes and Required Multidisciplinary Management. Acta Paediatr. 2025 Jun;114(6):1437-1444. doi: 10.1111/apa.17590. Epub 2025 Jan 22. PMID: 39840669; PMCID: PMC12066885.

Text by Anna Spyrou, Communications Officer