A systematic literature review looking for the definition of treatment burden

BACKGROUND: Treatment burden is an emerging concept in health care literature. It can complicate the patients’ condition and perhaps result in poor adherence to treatment, which is linked to worse clinical outcomes. However, until now there is no definition for treatment burden recognized by all stakeholders. This review was prepared in order to find what available definitions for treatment burden are present in the literature. METHODS: A systematic review of the literature was prepared looking for definitions of treatment burden in adult patients. Articles about adults aged 18 years or older from both genders with one or more medical conditions that contained a (new) definition of treatment burden were included. The search approach consisted of conventional systematic review database searching of multiple resources including Embase, Medline, PsycINFO, and CINAHL. Two independent reviewers screened the titles and abstracts, and full papers. RESULTS: The searches resulted in 8045 records, of which 16 articles were included. Based on quality appraisal criteria, we decided that two definitions had better evaluations than the rest of the definitions, the first one defining it as the impact of the ‘work of being a patient’ on functioning and well-being, the second as the actions and resources they devote to their healthcare. CONCLUSION: We consider the definition concentrating on actions and resources patients devote to their healthcare, including difficulty, time, and out-of-pocket costs dedicated to the healthcare tasks such as adhering to medications, dietary recommendations, and self-monitoring as the one probably comprising most domains of Treatment Burden that we have found in our search in the existing literature. However, adding even more domains to this definition and differentiating explicitly between patient's perception and caregiver's perception in the definition could in our opinion result in an improved definition. Also patients' evaluation of this definition is commendable.