Autoimmune Disease: Finding the Best Tools for Adherence

In autoimmune diseases, one size doesn’t fit all when it comes to tools to encourage adherence to treatment..

Nearly 10% of the U.S. population is affected by 29 autoimmune diseases, including rheumatoid arthritis, gout, Crohn’s disease, and lupus.

Effective therapies are available but many patients struggle to adhere to medication regimens or choose not to due to side effects, cost, or beliefs about their effects. Various studies estimate that as many as 50 percent of patients skip out on their meds at some point.

Online tools have been developed to help with adherence — many are digital versions of traditional paper tools – like diaries and trackers – along with additional feature like social networking. Still, studies show use of these tools often fizzles out fairly quickly. Moreover, there do not appear to be any such apps specifically designed for autoimmune diseases.

In a study published in the June 24 issue of PLoS, researchers from Evolution Health Systems in Toronto, Janssen Scientific Affairs in Horsham, Penn., and the University of Reading in the UK, conducted an analysis of current literature to identify the particular causes of non-adherence in autoimmune disease treatment and techniques that may be most likely to help.

Using “Grounded Theory,” a stepped approach to identifying, classifying, and analyzing research, they found that the most common modifiable factors affecting adherence were dose regimen, patients not understanding treatment, followed by side effects and a belief that the medication wasn’t effective. Ethnicity was the most common non-modifiable factor (age and gender being other factors).

According to these findings, adherence outcomes and digital attrition in autoimmunology patients could be improved if patients had tailored tools to help them gain a better understanding of their disease, the role of their medications, and information on side effects and the role of the dose regiment.

Lack of understanding, perceived ineffectiveness, and forgetfulness can be addressed through targeted communications — such as emails or texts, shared decision making tools, and regular interactions. Support groups could help with addressing side effects as patients share information and advice for mitigating the effects.

Tremendous cost results from not adhering to treatment — as diseases progress, and patients require more intensive care and hospitalization, as well as the cost due to missed work etc. Studies estimate non-adherence in North America costs $300 billion in avoidable costs each year.

“A patient’s relationship to treatment is highly personal, and digital interventions should take advantage of technologies that enable tailoring for the unique needs of individuals,” the authors wrote.