Delivery of Diagnostic News

• Ensure that diagnosis is given in person in a quiet, comfortable and private location
• Patient’s family or caregiver should be present
• Determine patient’s knowledge of amyotrophic lateral sclerosis (ALS)
  
  • Allow for questions and give reassurance
• Respect cultural and social background of patient
•  Provide written information about disease and support groups, if available
•  Offer a second opinion, if the patient wants it

Reassurance

• Explain complications are manageable
• Involve patient in care decisions and reassure patient that their treatment decisions will be respected

Sharing of Information

• Information needs to be provided to patient and family in a timely manner which is appropriate for decision making
  
  • Needs to be delivered well in advance of major management decisions (eg mechanical ventilation)

Genetic Counseling and Testing

• Should be offered only in cases with known familial history of amyotrophic lateral sclerosis and sporadic amyotrophic lateral sclerosis cases with the characteristic phenotype of the recessive D90A-SOD1 mutation
• Pre-symptomatic genetic testing should be offered in 1st-degree adult blood relatives of patients with known gene mutation
• Testing should be availed voluntarily and with informed consent