The Social and Emotional Impact of Wilson Disease on Patients and Families

Abstract

This chapter outlines the common emotional, financial, interpersonal, and legal concerns of patients diagnosed with Wilson disease and their caregivers. This chapter contains a checklist of these concerns, so physicians can review them quickly with their patients. The rest of the chapter explores those concerns in more detail, including suggestions for how a physician can direct his patient to appropriate resources.

Appendix

The following check list is a guide to common challenges for patients with Wilson disease and families:

Emotional

Yes □ No □ Coping: Is the patient expressing feelings of sadness? Overwhelmed? Angry outbursts?

Yes □ No □ Stigma: Is the patient afraid to tell family, friends, or employers about their diagnosis?

Yes □ No □ Social activity vs. isolation: Is the patient withdrawing from social and family settings?

Yes □ No □ Interpersonal conflicts: Does the patient complain of changes or conflict in their closest relationships?

Yes □ No □ Sexual relationships: Does the patient report difficulties with sexual desire or performance?

Financial

Yes □ No □ Income: Does the patient have adequate income for basic needs (housing, food, heat)

Yes □ No □ Work: Is the patient able to maintain employment? Are they afraid of being laid off because of their symptoms?

Yes □ No □ Work resources: Has the patient inquired about Family and Medical Leave Act (FMLA) to protect his job if he has to miss work for medical reasons? Have they inquired about short-term and long- term disability?

Yes □ No □ Special accommodations: Does the patient require special accommodations to maintain his employment?

Yes □ No □ Insurance: Does the patient have adequate financial coverage for doctor visits, lab work, and medications? Does the insurance have a deductible or co-pays?

Yes □ No □ Disability: If the patient is no longer able to work, does he qualify for Social Security Disability, and does he know how to apply?

Caregiver Concerns

Yes □ No □ Caregiver burnout: Are the parents, spouse, or caregivers of the patient reporting

fatigue, frustration and anger? Are they able to care for themselves?

Yes □ No □ Finding additional help: What is the patient and family network? Does the patient or caregiver know where to look for additional caregiving assistance?

Yes □ No □ Caregiver employment: Does the parent, spouse, or caregiver qualify for FMLA to help protect their employment, while they take time to care for the patient?

Yes □ No □ Finding a patient advocate: Does the patient or family have an advocate who can help navigate finding support and resources as needed? Are they aware of support groups in their area?

Legal

Yes □ No □ Power of attorney : Has the patient appointed a power of attorney to help manage his finances if he is unable?

Yes □ No □ Healthcare representative : Has the patient appointed a healthcare representative?

Yes □ No □ Conservator of person and finances : If the patient is not competent to appoint a healthcare representative or power of attorney, is there a family member or caregiver who can apply to be conservator?

Yes □ No □ Legal aid : Does the patient or caregiver need legal assistance to fight against discrimination or assist in disability claims? Can they afford representation?

Advanced Therapies

Yes □ No □ Transplant : Are the Wilson disease symptoms so severe that the patient requires a liver transplant? Does the patient meet the medical and psychosocial requirements to be eligible for a liver transplant?

Yes □ No □ Long-term care: If the patient is no longer able to care for himself and the family is also unable to care for him in the home, does he require placement in a facility, either short -term or long -term? Can they afford it? Do they know how to find appropriate facilities, and are they available?