Sumira Riaz, PhD, Health Psychologist & Patient Engagement Consultant at Unboxed Psychology, discusses the role of mental health in rare disease patient outcomes.
Unboxed Psychology is an organization focused on improving the mental health and well-being of patients and their families. Dr. Riaz explains how her organization looks at strategic insights and uses health-psych models and theories to implement better practices focused on improving mental health.
Rare disease patients and families face a unique set of challenges and psychological needs. Because of a lack of information, resources, and support that afflicts the rare disease space, patients and families deal with a lot of uncertainty. That in turn can lead to anxiety, feelings of being lost, and grief. Many of these patients and families are also involved in leading and organizing patient advocacy groups. This pressure in combination with dealing with diagnosis and treatment can lead to further stress that can impact their mental well being.
Unfortunately, mental health and well-being are not always prioritized in a space where finding disease information, getting proper treatment, and improving physical quality of life are the focus. However, Dr. Riaz stresses the importance of finding coping strategies that work on mental health as well. Better mental health and a supportive community can allow patients and families to put more time and energy into navigating a rare disease diagnosis.
Additionally, mental health can influence patient outcomes. Dr. Riaz suggests physicians and researchers assess the emotional readiness of patients and families prior to clinical trial enrollment. By briefing the family on clinical trial information and challenges that may arise and listening to and understanding patient concerns, clinical trial retention and engagement could increase.
For more information on rare disease advocacy, visit https://checkrare.com/rare-disease-advocacy-2/