| Care coordination |
- The care coordinator is a point of contact for patients with DMD and families; they should be health professionals with sufficient training or experience in the clinical care of patients with DMD
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- The role of the care coordinator is to provide information, coordinate (and possibly schedule) appointments, and facilitate communication with clinicians across disciplines
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| Routine mental health screening |
- At each neuromuscular clinic visit, mental health and quality of life should be screened
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- Screening can be informal and does not require comprehensive assessment
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- An appropriate tool for pediatric patients is the Strengths and Difficulties Questionnaire;[1] for adult patients, the Patient Health Questionnaire 9-item depression scale (PHQ-9)[2] and the Generalized Anxiety Disorder 7-item scale (GAD-7)[3] are appropriate; for parents of patients aged 5 to 17 years, the Personal Adjustment and Role Skills Scale (PARSIII) is suitable[4,5] (scale and scoring program is available on the Parent Project Muscular Dystrophy website)
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- Screening can be conducted by a social worker or mental health professional or by other clinic staff with sufficient training or experience in this area (eg, a nurse or attending physician)
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- If screening is positive, a referral should be made to a psychologist and psychiatrist for further assessment or treatment
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- Every clinic should have a plan to assess and address suicidal ideation or other acute safety concerns
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- Caregiver emotional adjustment should be monitored and intervention or support offered as needed
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- Siblings of a person with DMD should be provided with opportunities to connect with other siblings of patients with DMD and with access to mental health services as needed
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| Psychological care |
- All individuals with DMD should be expected to live rich, fulfilling lives, and those without additional neurodevelopmental or psychological disorders may achieve a high level of independence in managing their disease; however, all patients and their families might need psychosocial support
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- The neuromuscular care team should include a mental health professional (ie, psychologist or psychiatrist) with training and experience in assessing and treating psychiatric conditions in the context of chronic medical or neurodevelopmental conditions
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- When mental health concerns are identified, the mental health professional should provide further evaluation of individuals with DMD and their family members, and provide cognitive or behavioral interventions to treat psychiatric conditions
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- Standard, evidence-based practices should be used for those who need more formal mental health treatment
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- Neuropsychological evaluations should be done when cognitive delays, difficulties with emotional and behavioral regulation, or concerns about social skills exist; re-evaluations should be done every 2 to 3 years to monitor developmental progress and response to interventions
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- Neuropsychological evaluations should be considered within the first year of diagnosis to establish a baseline, or when transitioning to adulthood if government-based assistance might be necessary to promote functional independence
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| Pharmacological interventions |
- The neuromuscular team should include a psychiatrist or other physician with training and experience in providing medication to treat behavioral or emotional disorders in the context of chronic medical or neurodevelopmental conditions
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- Standard prescribing practices should be followed
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- Selective serotonin-reuptake inhibitors should be prescribed for depression, anxiety, and obsessive–compulsive disorder
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- Alpha-adrenoceptor agonists (first choice) or atypical antipsychotics (second choice) should be prescribed for aggression and anger or emotional dysregulation
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- Stimulants or alpha-adrenoceptor agonists should be prescribed for attention-deficit hyperactivity disorder
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