Patient discussions
Physicians should advise patients about time-relevant issues. The time to focus on employment/disability is usually around the time of diagnosis; on driving at the point when work is no longer possible; on home safety when patient no longer drives (e.g., use of the microwave instead of the oven); and on choking and swallowing when weight loss develops.[23] Belaboring dysphagia and end-of-life discussions at the time of diagnosis may serve to needlessly increase anxiety and elevate suicide risk. However, it is helpful to plan ahead for end-of-life issues and discuss advance directives once the patient and family feel ready for these discussions, so that patients can express preferences while they still retain the ability to do so.[59][102][103] Ongoing discussion of advanced care planning should then form part of regular follow-up.[136]
Ideally, at-risk offspring need to be aware of the familial nature of the disease in late adolescence and the availability of genetic testing as they reach adulthood. Family planning options (such as preimplantation genetic testing) should be discussed with them by the time they enter into serious interpersonal relationships. The unembroidered prospect of a partner caring for a spouse with the disease and at the same time rearing teenage children should be pointed out, along with its sobering financial and emotional implications.[23] Early enrollment in disability and long-term care programs, particularly employer-provided plans, should be given prudent consideration.
Directing patients and families to community resources, Huntington disease support groups, and relevant governmental agencies can be of benefit. Huntington's Disease Society of America Opens in new window International Huntington Association Opens in new window
Females of childbearing potential should be informed that they must follow a pregnancy prevention program while on treatment with valproate medicines. For EU countries, the European Medicines Agency states that this program should include:[78]
An assessment of the patient’s potential for becoming pregnant
Pregnancy tests before starting and during treatment as needed
Counseling about the risks of valproate treatment and the need for effective contraception throughout treatment
A review of ongoing treatment by a specialist, at least annually
A risk acknowledgement form that patients and prescribers go through at each annual review to confirm that appropriate advice has been given and understood.
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