Supporting Treatment Adherence in Rare Disease

PM360, Health Psychology by John Weinman, PhD and Kate Perry on May 25th, 2016

Living with a rare disease presents multiple challenges to patients and their families, including those associated with adherence to long-term treatments. As with other chronic conditions, the discipline of health psychology enables us to identify the barriers and motivators specific to individuals with rare disease—and helps us create successful interventions for improved self-management.

Four Key Considerations for Rare Disease Treatment Adherence:
1. Family involvement
2. Lack of local knowledge
3. Perceived stigma
4. Feelings of isolation