Amyotrophic%20lateral%20sclerosis Patient Education
Patient Education
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
- Testing should be availed voluntarily and with informed consent