Up to 63% of people with multiple sclerosis have experienced domestic violence, yet a survey found zero documented cases in the medical records of the same clinic where 38% of patients reported it.
That gap between lived experience and clinical detection sat at the heart of a viewpoint published online this month in JAMA Neurology [link here], by researchers from the University of Melbourne, UNSW Sydney, Murdoch University, and the University of Leeds.
The authors estimated that 1.8 million of the 2.9 million people with MS worldwide may have experienced domestic violence, spanning financial, psychological, physical, sexual, and coercive forms.
People with MS faced a convergence of risk factors rarely seen in other patient groups, the authors argued, noting MS onset typically occurred between ages 20 and 40, with a female predominance, and young women faced the highest baseline risk of domestic violence. A disability diagnosis itself doubled that risk. Social isolation, reduced employment, financial dependency, poverty, and reliance on informal caregivers compounded the vulnerability further, they wrote.
The authors noted that domestic violence in this population had been associated with worse fatigue, depression, neuropsychological impairment, and elevated pro-inflammatory cytokines, though they cautioned that prospective data remained sparse.
They also highlighted a problem of clinical detection. The authors cited a retrospective study examining medical records from a single MS clinic that found no documented cases of domestic violence among female patients, while a concurrent survey of a separate group of female patients from the same clinic found 38% had experienced domestic violence, with 15% reporting an incident within the previous year.
Many clinicians lacked basic knowledge of what constituted domestic violence, its prevalence in this population, and what indicators to look for, the authors said, adding they also lacked knowledge of disability-inclusive local services and protocols. Vicarious trauma was an additional concern, the authors noted, particularly for clinicians with lived experience of domestic violence.
Common clinical indicators in the general population included unexplained injuries (especially facial), chronic pain, and traumatic brain injury, they wrote. Frequent consultations, repeated cancellations without clear explanation, or the presence of an overly controlling companion were also warning signs.
The authors argued that neurology clinicians were well positioned to detect and respond to domestic violence, given their regular, ongoing contact with patients. They proposed a five-step clinical framework summarised under the acronym AWARE: Allow disclosure safely, Witness and validate, Assess immediate risk, Respond, and Evidence.
Practically, the authors said that meant routinely asking simple questions such as “how are things at home?” while ensuring the patient was alone, using professional interpreters where needed, assessing barriers to escape including mobility and access to resources, creating safety plans with accessible transport and refuge options, and documenting all disclosures carefully, sharing information only according to local safeguarding policies.
The authors acknowledged the research base had limitations. Studies had used different definitions of domestic violence, different scales, and different timeframes, limiting comparisons. Most research had focused on women, with little data on men or gender-diverse people with MS, or on the intersection of domestic violence with other social determinants.
The viewpoint called for standardised, best-practice assessment tools across future studies, inclusion of the lived experiences of people with MS in research design, and evaluation of both universal and targeted screening strategies in high-risk populations.