Review of Patient-Reported Measures of Burden of Treatment in Three Chronic Diseases

The information provided here supplements an article to be published in Patient Related Outcome Measures, “A Systematic Review of Patient-Reported Measures of Burden of Treatment in Three Chronic Diseases” (In press, expected publication 2013).


David T. Eton, Tarig A. Elraiyah, Kathleen J. Yost, Jennifer L. Ridgeway, Anna Johnson, Jason S. Egginton, Rebecca J. Mullan, Mohammad Hassan Murad, Patricia J. Erwin, Victor M. Montori

Supported by Mayo Clinic’s Center for Translational Science Activities (CTSA) through grant number UL1 RR024150 from the National Center for Research Resources (NCRR), a component of the National Institutes of Health (NIH).



Burden of treatment is the workload of health care and its impact on patient functioning and well-being. There are a number of patient-reported measures (PRMs) that assess burden of treatment in single diseases or in specific treatment contexts. A review of such measures could help identify content for a general measure of treatment burden that could be used with patients dealing with multiple chronic conditions. We reviewed the content and psychometric properties of PRMs that assess aspects of treatment burden in three chronic diseases – diabetes, chronic kidney disease, and heart failure.


We searched Ovid MEDLINE, Ovid EMBASE, Ovid PsycINFO, and EBSCO CINAHL through November 2011. Abstracts were independently reviewed by two people with disagreements adjudicated by a third person. Retrieved articles were reviewed to confirm relevance, with PRMs scrutinized to determine consistency with the definition of burden of treatment. Descriptive information and psychometric properties were extracted for the PRMs.


A total of 5,686 abstracts were identified from the database searches. After abstract review, 359 full-text articles were retrieved of which 76 met inclusion criteria. An additional 22 articles were identified from the references of included articles. From the 98 studies, 57 PRMs of treatment burden (full measures or components within measures) were identified. Most were multi-item scales (89%) and assessed treatment burden in diabetes (82%). Only 15 measures were developed using direct patient input and had demonstrable evidence of reliability, scale structure, and multiple forms of validity; 6 of these demonstrated evidence of sensitivity to change. We identified 12 content domains common across measures and disease types.


Available measures of treatment burden in single diseases can inform derivation of a patient-centric measure of the construct in patients with multiple chronic conditions. Patients should take part in developing the measure to ensure salience and relevance.

Supplemental appendix cited in the article: Supplementary data

For more information, please contact the corresponding author:

David T. Eton, Ph.D.
200 First Street SW
Rochester, MN 55905
Phone: 507-293-1353
Fax: 507-284-1516