Change for Good in Rare Disease
Learning from the lived experience
With treatments for rare diseases being few in number, adherence becomes that much more critical. To gain a deeper understanding of the reasons for intentional non-adherence, we administered validated tools to a global sample of patients with rare diseases.
The Intentional Non-Adherence Scale* assesses the reasons why a person may choose not to take their medication as prescribed.
Our research showed that the highest-ranking factors were related to Resisting Illness, suggesting that helping patients with adherence may start with disease acceptance.
Top Intentional Non-Adherence Factors
55%
“Because I want to lead a normal life again”
49%
“Because I want to think of myself as healthy person again”
51%
“Because it is inconvenient to take all the time”
55%
“Because it is good not to have to remember”
44%
“Because it reminds me that I have an illness”