Prevalence of Treatment Burden in the Last Three Years of Life

Abstract

Background: Little is known about the experience of treatment burden, or the difficulties that arise when the treatment workload overwhelms one's ability to take on treatment activities, at the end of life. Objective: We first assessed rates of treatment burden experienced by all older adults in the last three years of life. Among the subset of our sample who had multiple chronic conditions (MCCs), we determined correlates of treatment burden with sociodemographic, health, and caregiving factors. Design: We conducted a cross-sectional study using nationally representative data from the National Health and Aging Trends Study (NHATS). Setting/Subjects: Our sample included 356 adults, aged 65 years and older, who died within three years of completing the 2012 NHATS Treatment Burden Questionnaire. Our MCC cohort included only those in our sample with two or more chronic conditions. Measurements: Our measure of treatment burden included reports of difficulty in managing treatment activities, delays in treatments, or feeling that physicians asked for too much. We built a composite measure to identify burden if participants reported that at least one item occurred sometimes or often. Results: Forty-three percent of older adults in their last three years of life experienced treatment burden. Among individuals with MCCs, bivariate analysis found that treatment burden was associated with being a racial minority and having depression, anxiety, and a cancer diagnosis. These associations were not statistically significant in a multivariable model. Conclusion: Treatment burden is a common experience among older adults regardless of sociodemographic, clinical, and caregiving factors.

Geriatric assessment‐derived deficit accumulation and patient‐reported treatment burden in older adults with bladder cancer

“…It was then adapted, validated, and expanded for English‐speaking patients into the fifteen‐item questionnaire used in our study 15 . The TBQ has previously been used with older adults and with cancer patients 16,17 . The fifteen items measure patient‐perceived burdens associated with managing ≥1 chronic conditions including medication management, arrangements for medical appointments and tests, self‐monitoring, relationships, administrative and financial burdens, and adherence to physician recommendations 15,18 .…”

“…15 The TBQ has previously been used with older adults and with cancer patients. 16,17 The fifteen items measure patient-perceived burdens associated with managing ≥1 chronic conditions including medication management, arrangements for medical appointments and tests, self-monitoring, relationships, administrative and financial burdens, and adherence to physician recommendations. 15,18 Fourteen items are scored on a 0-10 Likert scale with 0 indicating "Not a Problem" and 10 indicating "A Big Problem."…”

Relationship between Treatment Burden, Health Literacy, and Medication Adherence in Older Adults Coping with Multiple Chronic Conditions

“…Informed consent was obtained from every participant prior to enrolling in this study. The sample size was determined based on previous data by Ghazali et al, that the prevalence of older adults suffering from MCC is 40.6% [ 9 ]. It was calculated by utilizing the Raosoft ® sample size calculator with a population size of 3.5 million people over the age of 60, a margin error of 5% with a confidence interval of 95% [ 33 ].…”

“…May et al further implied that if the treatment burden is well understood and strategies to shift the burden materialize, this would carve a way for better health outcomes, improved adherence to treatment, and reduced healthcare cost [ 8 ]. Treatment burden arises when the responsibilities of self-managing older adults’ treatment activities outweigh their ability to handle them [ 9 ]. As the aging process takes place with deteriorating physical and cognitive abilities, older adults may become increasingly dependent on their family members or caretakers to manage their daily routines [ 10 ].…”