by Kurt Ullman, Medical Writer
Chronic illnesses such as vasculitis includes the burden of the disease itself, but also the various burdens associated with treatment. Those with more than one condition find the problems multiplied.
“There is a struggle to balance benefits and risks of multiple recommended treatments,” said Viet-Thi Tran, from the Department of General Medicine at Paris Diderot University in Paris, France. “A physician following clinical practice guidelines could prescribe up to 12 medications for patient with osteoporosis, osteoarthritis, diabetes mellitus, hypertension and chronic obstructive pulmonary disease.”
The “work of being a patient” with vasculitis includes such things as drug management, self-monitoring, visits to the doctor, and lifestyle changes.
“This is a real problem for patients that is largely overlooked both in research and practice,” said Dr. Tran. “There is a need to take the patient’s context into account. Care must be integrated in the patient’s lives (and not the contrary), so as to improve patient’s adherence to care and quality of life with their chronic conditions.”
To address these issue, Dr. Tran and others developed an online survey that included English-, French- and Spanish-speaking participants with many chronic conditions, including vasculitis. Between 2013 and 2014, 1053 participants from 34 different countries answered the survey.
The responses analysis use both manual and automatic methods.
The patients described tasks imposed on them by both the disease and the healthcare system (medication management, lifestyle impacts, etc.)
They also chronicled financial factors, structural factors (access to care, coordination of providers), and patient-reported consequences of the disease burden such as impact on family, professional and social life, financial burdens and nonadherence to treatments. “
One of the general objectives of our research is create “minimally disruptive medicine” that is both effective and fits in our patient’s lives,” said Dr. Tran. “For that to happen, physicians need to listen and better understand the workload and capacity of their patients. This includes everything else they do outside of their care such as social, familial, and professions responsibilities.”
“Our research was the first to describe patient’s burdens in a large population of patients with chronic conditions from multiple countries,” said Dr. Tran. “We hope that our work will help clinicians and researchers to better measure, understand and reduce patient’s burden of treatment.”