Mental health symptoms common in SMA patients, their caregivers
Study researchers call for integrating mental health professionals into care
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- Children and adults with SMA, along with their caregivers, experience clinically relevant mental health symptoms.
- Caregivers of patients with SMA type 1 exhibit the greatest psychological burden.
- Experts recommend integrating routine psychological screenings and mental health professionals into neuromuscular care teams.
Children and adults with spinal muscular atrophy (SMA), as well as their caregivers, may experience clinically relevant mental health symptoms, including anxiety and depression, a nationwide German study found.
Among caregivers, those of patients with SMA type 1, the most common form of the disease, showed the greatest psychological burden.
These findings suggest that “embedding mental health professionals within neuromuscular care teams and facilitating access to psychological services may help address the substantial yet often unmet psychosocial needs of patients and their families,” researchers wrote.
The study, “Psychological symptoms in individuals with Spinal Muscular Atrophy (SMA) and their caregivers – results from a nation-wide study in Germany,” was published in the Orphanet Journal of Rare Diseases.
SMA patients may experience anxiety, depression
SMA is chiefly caused by mutations in the SMN1 gene that lead to the loss of motor neurons, the specialized nerve cells that control movement, resulting in symptoms such as muscle weakness and impaired movement.
People with SMA may experience mental health problems, particularly depression and anxiety. Rates of these symptoms are higher in children with SMA than those of outward-directed behaviors such as hyperactivity or aggression, but less is known about similar issues in adults with this neuromuscular disorder. Likewise, although studies indicate that a noticeable proportion of caregivers of SMA patients have depression or anxiety, much is still unknown in this group, including how emotional symptoms correlate with SMA type.
In addition, few studies have explored the impact of modern SMA therapies on psychological symptoms in the SMA community.
To learn more, researchers assessed the psychological symptoms of 103 SMA patients recruited through the national German SMA registry, as well as those of 67 of their caregivers. Overall, 82 patients were adults (median age 42.5 years), and 21 were children or adolescents (median age 9.7 years).
More than half of patients had SMA type 3
Most patients (57%) had SMA type 3, followed by type 2 (36%) and type 1 (7%). Almost two-thirds of the patients were able to sit, and 26% could walk. Regarding treatment, 55% were receiving Spinraza (nusinersen), and 22% each were either taking Evrysdi (risdiplam) or were untreated.
Among children with SMA, 9.5% had clinically relevant mental health symptoms based on parental reports, including emotional problems (19%) and hyperactivity and difficulties with peers (9.5% each). Emotional problems were highest in children with SMA type 3 (38%), while peer problems were only reported in those with SMA type 1 (50%). No clinically relevant symptoms were reported by the seven children who completed their own assessments.
In adults with SMA, 13.4% reported clinically relevant psychological symptoms, mainly anxiety (13.4%), depression (11.1%), and somatization (14.6%), when psychological distress manifests as physical symptoms.
Clinically relevant mental health symptoms were reported by 14.9% of caregivers, who were mostly parents. Similar to the patient groups, symptoms in caregivers included anxiety and somatization, each affecting 14.9% of participants, as well as depression (11.9%). They were more common in caregivers of children with SMA type 1.
The results imply that pharmacological treatment does not substantially improve psychological symptoms in either individuals with SMA or their caregivers, which is understandable, as such improvements would not be expected from pharmacological treatment alone.
The researchers noted that children with SMA type 1 have “extremely limiting physical impairments, e.g. including the need of ventilatory [breathing] support, which of course may lead to social problems or difficulties in interacting with other children,” the team wrote. “Otherwise, with the new pharmacological treatments, these children have a much better outcome and a longer survival prognosis, so that increasing and improving the opportunities to social participation in these patients is a relevant clinical implication for the future.”
Overall, the use of Spinraza or Evrysdi was not significantly associated with psychological symptoms. However, among adults with SMA, somatization (24% vs. 11.5%) and anxiety (19% vs. 13%) were more frequent in those who were not receiving these medications than in patients on either of these therapies. Somatization was less frequent in adult patients treated with Spinraza than those receiving Evrysdi (7.1% vs. 21.1%).
“The results imply that pharmacological treatment does not substantially improve psychological symptoms in either individuals with SMA or their caregivers, which is understandable, as such improvements would not be expected from pharmacological treatment alone,” the researchers wrote.
They also found a significant association between psychological symptoms in people with SMA and their caregivers, suggesting that mental health may be interconnected within families. These findings emphasize “the need for integrated psychosocial care tailored to both individuals with SMA and their caregivers to reduce stress and improve quality of life,” the researchers added.
Overall, this study suggests clinical implications for the care of individuals with SMA and their families, including “routine psychological screening … [that] could help to identify emerging mental health difficulties at an early stage,” as well as access to psychological care for both patients and caregivers.
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