New Scoring System Identifies Acceptable Burden of Treatment for Patients With Chronic Conditions

By Will Boggs MD

December 10, 2019

NEW YORK (Reuters Health) - A new scoring system derived from the Treatment Burden Questionnaire (TBQ) can help clinicians identify patients at risk for becoming overwhelmed by their medical care.

For many patients with multiple chronic conditions, the amount of time required to deal with healthcare tasks can be comparable to a part-time job. The burden of treatment for these patients encompasses everything they do to care for themselves and its impact on their well-being.

A higher burden of treatment has been linked to poor adherence to medications, lower satisfaction with care, and decreased quality of life.

Dr. Viet-Thi Tran of Universite de Paris and Hopital Hotel-Dieu and colleagues used data from 2,413 patients in the Community of Patients for Research to determine the highest burden of treatment beyond which patients with chronic conditions consider their current investments of time and effort in healthcare unsustainable over time.

They matched participants' answers to the TBQ (maximum score, 150) and their answers to the Patient Acceptable Symptom State (PASS) anchor question: "Coping with all health tasks imposed on you (visits, tests, medication, lifestyle changes, administrative tasks, etc.) can sometimes take a lot of time, effort, money and sacrifice. Think about all the things you do to care for yourself. Do you think you could continue investing the same amount of time, energy, and money in your health care lifelong?"

Overall, 38% of participants found their treatment burden unacceptable, ranging from 19% for patients with cardiac conditions to 50% for those with asthma, researchers report in Mayo Clinic Proceedings, online October 13.

All 15 TBQ item scores averaged higher for patients who considered their burden of treatment unacceptable, and, among patients with available scores, levels of depression and anxiety were also higher for patients with unacceptable versus acceptable burdens of treatment.

A TBQ cutoff score of 59 (39.3% of the maximal score) was 57% sensitive and 75% specific for identifying patients with unacceptable burdens of treatment.

The TBQ score above which most patients reported that they would not be able to sustain the same investment of time, effort, and energy lifelong ranged from 45 (30% of the maximal score) for patients with cancer to 87 (58% of the maximal score) for those with asthma.

"The PASS can help clinicians, patients, and researchers interpret and put into context burden-of-treatment scores in research, quality evaluations, and care," the authors conclude.

Dr. Claudia Dobler from Liverpool Hospital, in Sydney, Australia, who has researched the patient-perceived treatment burden of chronic obstructive pulmonary disease, has argued that treatment burden should be included in clinical-practice guidelines. She told Reuters Health by email, "Most surprising for me as a pulmonologist was the finding that 50% of patients with asthma reported unacceptable burden of treatment. I was aware that asthma is associated with a high disease burden, but seeing the high treatment burden was a real eye-opener. As a clinician we might think that our patient just has to take an inhaler, but this study clearly demonstrates that the treatments we prescribe are often associated with substantial treatment burden to patients."

"Physicians need to be aware that many patients struggle with treatment burden," said Dr. Dobler, who was not involved in the new study. "They should actively address the issue during clinical encounters and discuss potential solutions with the patient (reducing treatment workload or increasing the patient's capacity to bear it)."

"I am keen to see future research that addresses the question how we can effectively reduce patients' treatment burden or increase their capacity to deal with it," she said.

Dr. Tran did not respond to a request for comments.


Mayo Clin Proc 2019.