Medical Patients Face Hidden Time Burdens

Treatments for serious illnesses like cancer can be enormously time-consuming. Yet most research on cancer-related time burdens has relied on hospital administrative data and medical records - information that captures appointment lengths but overlooks the many additional hours patients spend traveling to appointments, managing care at home and handling the paperwork that accompanies their treatment.

A new study from the University of Minnesota School of Public Health, University of Minnesota Medical School and the University of Alabama at Birmingham sheds light on this often-overlooked cost of cancer care and examines the full scope of time patients devote to managing their treatment, both inside and outside the clinic.

To conduct the study, researchers tracked 60 adults receiving systemic therapy treatments for metastatic breast cancer or advanced stage ovarian cancer. Participants used a smartphone app that automatically detected location and activity through GPS and phone sensors to track their time use over 28 days. Participants reviewed and corrected the app's activity logs each day and reported additional out-of-clinic cancer-related tasks through short in-app surveys.

The study, published in JAMA Network Open, found:

  • Travel and waiting often exceeded treatment time. For many patients, the combined time spent traveling to appointments and waiting once there was longer than the time spent receiving actual medical care.
  • Home-based cancer tasks consumed significant time. Participants spent a median of 209 minutes per week on at-home tasks such as managing medications, scheduling appointments, handling medical bills, monitoring symptoms and arranging help or transportation.
  • The overall time burden was substantial and disruptive. Patients devoted a median of 400 minutes per week to cancer-related tasks.

"For years, patients have been telling us that managing cancer is like a part-time job - now we have the objective data to support that. Treatment for a disease like cancer can take over a patient's life in countless ways, yet past studies haven't captured the full range of demands it creates," said Rachel Vogel, an associate professor in the University of Minnesota Medical School and lead author.

"For many patients, the hours spent traveling, waiting or managing care at home far exceed the time spent in actual treatment," said Helen Parsons, a professor in the School of Public Health and co-author. "Recognizing these hidden burdens on patients, as well as their families and caregivers, is essential if we want to design cancer care that truly meets patients' needs."

Future research should refine how time burden is measured, examine which demographic or clinical factors predict higher burdens and explore how these demands affect quality of life, employment and financial well-being.

This study is part of a broader effort to address time and administrative burdens in cancer care through a network called LIFT (Leading Innovation for Cancer Treatment Burden Network) which is led by Vogel and Parsons.

About the School of Public Health

The University of Minnesota School of Public Health improves the health and wellbeing of populations and communities around the world by bringing innovative research, learning, and concrete actions to today's biggest health challenges. We prepare some of the most influential leaders in the field, and partner with health departments, communities, and policymakers to advance health equity for all. Learn more at sph.umn.edu.

About the Medical School

The University of Minnesota Medical School is at the forefront of learning and discovery, transforming medical care and educating the next generation of physicians. Our graduates and faculty produce high-impact biomedical research and advance the practice of medicine. We acknowledge that the Medical School is located on traditional, ancestral and contemporary lands of the Dakota and the Ojibwe, and scores of other Indigenous people, and we affirm our commitment to tribal communities and their sovereignty as we seek to improve and strengthen our relations with tribal nations. Learn more at med.umn.edu.

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