Taxonomy of the burden of treatment: a multi-country web-based qualitative study of patients with chronic conditions

Abstract

Background

Management strategies for patients with chronic conditions are becoming increasingly complex, which may result in a burden of treatment for patients. To develop a Minimally Disruptive Medicine designed to reduce the burden of treatment, clinicians need to understand which healthcare tasks and aggravating factors may be responsible for this burden. The objective of the present study was to describe and classify the components of the burden of treatment for patients with chronic conditions from the patient’s perspective.

Methods

We performed a multi-country qualitative study using an online survey and a purposive sampling strategy to select English-, French-, and Spanish-speaking participants with different chronic conditions. Participants were recruited by physicians, patients’ associations, advertisement on social media, and ‘snowballing’. The answers were analyzed by i) manual content analysis with a grounded theory approach, coded by two researchers, and ii) automatic textual analysis by Reinert’s method.

Results

Between 2013 and 2014, 1,053 participants from 34 different countries completed the online survey using 408,625 words. Results from both analyses were synthesized in a taxonomy of the burden of treatment, which described i) the tasks imposed on patients by their diseases and by their healthcare system (e.g., medication management, lifestyle changes, follow-up, etc.); ii) the structural (e.g., access to healthcare resources, coordination between care providers), personal, situational, and financial factors that aggravated the burden of treatment; and iii) patient-reported consequences of the burden (e.g., poor adherence to treatments, financial burden, impact on professional, family, and social life, etc.). Our findings may not be applicable to patients with chronic conditions who differ from those who responded to our survey.

Conclusions

Our taxonomy of the burden of treatment, provided by patients with chronic conditions from different countries and settings, supports the development of tools to ascertain the burden of treatment and highlights potential targets for interventions to minimize it.

Electronic supplementary material

The online version of this article (doi:10.1186/s12916-015-0356-x) contains supplementary material, which is available to authorized users.