Patient discussions

Communication of the diagnosis and information relating to ALS should be tailored to the needs of the patient and their family. Not all patients will want detailed information about prognosis straight away. Patients should be asked about their preferences for involving their family members and/or other caregivers. Both verbal and written information about symptoms, management (especially nutritional and respiratory support), and specific treatments should be provided.[11][36][63][72]

All patients with ALS should be offered genetic testing, and both pretest and post-test counseling. Pretest counseling should cover personalized risk assessments and the range of possible outcomes, and prepare the patient for possible personal, psychological, and economic impacts of testing on themselves and family members. Post-test counseling allows the patient to discuss their result and the implications for them and their family.[24]

Advance directives and wishes for end-of-life care should be discussed with the patient and family/caregivers as early as possible (but only when they are ready to do so), and long before hospice care is needed. Ongoing discussion of advanced care planning should be part of regular follow-up.[11][36][62]

Patients who have feeding tubes and their caregivers should be instructed in their use: for example, how to prevent clogging.[129]

The patient, and their family members and other caregivers, should be advised to seek immediate medical evaluation if the patient shows symptoms of severe respiratory dysfunction, especially when associated with fever.

Online information from recommended sources may be helpful for patients and families. MDA (Muscular Dystrophy Association): ALS division Opens in new window

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