Obsessive Compulsive Disorders Evident in Duchenne Patients and in Need of Treatment, Study Says

Obsessive Compulsive Disorders Evident in Duchenne Patients and in Need of Treatment, Study Says

Obsessive compulsive disorder (OCD), a type of “internalizing disorder,” are evident in children with Duchenne muscular dystrophy, and particularly associated with anxiety and places considerable stress on the patient’s family, a small retrospective study reported.

Researchers call attention to the importance of care providers being alert to signs of OCD and anxiety in patients, and treating their mental as well as physical health.

Their study “Descriptive Phenotype of Obsessive Compulsive Symptoms in Males With Duchenne Muscular Dystrophy” was published in the Journal of Child Neurology.

Previous work has shown a higher-than-average prevalence of behavioral or emotional disorders like OCD — known as internalizing disorders — in boys with Duchenne muscular dystrophy (DMD). But these studies do not detail the clinical symptoms that mark this patient population.

A team of researchers at University of Iowa sought to characterize the clinical signs, impact on patients and families, and response to treatment of internalizing disorders in DMD patients.

They retrospectively reviewed medical charts of boys and men, ages 5 to 34, being treated at the University of Iowa Hospital and Clinics between 2012 and 2017.

In total, data on 107 patients were reviewed; the study focused on a final group of 39 Duchenne patients. Of these, 15 exhibited OCD spectrum symptoms (14.0%), anxiety was evident in 27 patients (25.2%), and 14 had signs of depression (13.1%), the study reported. Often, symptoms of more than one disorder were reported in patients.

The mean age at OCD onset was 12.1 years, but the study reported evidence of symptoms having started earlier — as young as age 5 — although not problematic until the patients were older. At the time of the study, these 15 people ranged in age from 5 to 23.

“Common initial symptoms included difficulty with changes in routine, repetitive behaviors, and organizational compulsions,” the researchers wrote “Many patients required a very specific bedtime routine.”

Anxiety was also more likely to affect Duchenne boys with evidence of OCD (73.3%) than is common; anxiety at notable levels is usually seen in about 50% of other young patients with OCD.

Patients’ daily life and that of their families were often unsettled by these internalized disorders. Three cases were emphasized in the study, detailing patients who began experiencing OCD symptoms at very early ages, ranging from 4 to 6.

Irritability and distress in these children significantly disturbed family routines and quality of life. Symptoms also worsened as patients grew older, but treatment with selective serotonin reuptake inhibitors (SSRIs), a common type of antidepressant, resulted in consistent improvements over time. 

Records showed that psychotherapy was recommended to all 15 OCD patients in the study — whether evaluated by psychiatrists (nine patients) or doctors in their healthcare team — but only five were getting routine treatment by a psychiatrist or a therapist.

Most, 14 of the 15, were using SSRIs prescribed to them, a finding the researchers attributed to limited access to psychotherapy or financial burden.  According to the study, SRRIs given these patients included fluoxetine, sertraline, citalopram, escitalopram, paroxetine, and clonazepam.

These medicines did not completely resolve OCD symptoms, but patients and families reported their use helpful in easing anxiety and greatly improving quality of life.

“Our data affirm that internalizing disorders are prevalent in the Duchenne muscular dystrophy population, warranting clinical attention and screening, as generally early diagnosis and treatment are associated with greater symptom improvement,” the researchers concluded.


  1. Thank you says:

    I am sad to see that my suspicions have been correct. Throughout the life of my brother we (Mom, Dad and myself) did everything that we could to make sure that he was well attended and happy. We always told him that his needs came first and we all suffered when we saw his suffering. My parents have passed on but when they were alive they jumped to do anything he asked; even when they were in pain and suffering themselves. His demands only increased as he aged (now over 50) and gets angry when things are not done to his liking/specifications. When I last saw him (I now have a disability as well) he became upset with me because I was unable to remain in a bending/kneeling position to perfectly move his legs and feet to his liking. It can take up to 15 minutes and must be done several times per day. This situation involves his telling whomever is helping him:”about half an inch to the left for my left leg, okay, now a quarter of an inch forward, pick up under the knee and allow the weight to go on the toes” but you see it does not stop there, it goes on and on and we always thought he was in pain and due to his paralysis this was the least that we could do in order to provide him comfort. I know that my parents (and I) could never say no to him because it felt unkind but when you are suffering yourself and crying in pain and the person is still upset/angry with you because you are not doing EXACTLY what he tells you…well, it is a nightmarish situation. I am glad that this now has a “name” to it as we just thought he was insensitive to our pain as a result of his enormous suffering.

    • Thank you says:

      Please pardon me as I neglected to mention in my prior comment that my brother never had qualms about yelling at our Mother and myself but never dared to yell at our Father or sister who (both) would not tolerate his angry outbursts and would react with equal or greater anger AND walk away. I beg you; if your family member is suffering in this way to please get him help. My brother had refused to tell a counselor the truth about his “need to follow a DAILY routine”(morning, noon and night) that required our Mom doting on him 24/7 even when he had Home Health Aides come to the home because they would not be able to do EVERYTHING that he required. Due to my health I have been advised to stay away from him, his angry outbursts and inability to understand/care about my well-being. I beg you, get your child help before he, unknowingly, destroys you, as was the case with our Mom. Doting on a boy’s needs during his childhood could NEVER seem excessive when you think that he is dying; you WANT TO DO EVERYTHING that you possibly can for him! Should he reach,by the grace of God,50,and become accustomed to being doted upon and yells and growls in anger if people do not do exactly what he says it leaves you absolutely helpless. You are left torn because you know he IS suffering and then, such as the case with my family, your only course of action is to continue to pray. Please do not wait and wonder, please get him help AND continue to pray!Distant family members had been judgemental and admonished our parents for spoiling him but if you believe your baby boy is dying how can the word “spoiling” ever be used? Now that I am older I understand and I only wish that I could turn back the clock and get my brother the help (counseling and meds) that he needed, starting in his teenage years.

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