Administrative Burden In Patients with Cancer and Their Caregivers: A Qualitative Study

Background and Purpose: Cancer treatment often requires patients to manage administrative burden—non-clinical tasks such as scheduling appointments, handling paperwork, and communicating with insurance companies. Although existing research has documented the time, financial, and psychological demands these tasks place on patients, less is known about how individuals in patients’ social networks help address these burdens. Guided by Burden of Treatment Theory, we examined how patients with cancer and their informal caregivers experience and manage administrative burden, its practical and emotional consequences, and the supports they perceive as helpful in navigating the healthcare system.

Methods: This qualitative descriptive study used purposive sampling to recruit English-speaking adults receiving cancer treatment at a Southeastern academic hospital; caregivers were recruited through patient referrals. One-time, semi-structured interviews, lasting approximately 30-45 minutes, were conducted between October 2025 and January 2026. Interviews were recorded, transcribed, and independently summarized by two researchers using rapid qualitative analysis. A third researcher used a standardized template to assess convergence, document agreements and discrepancies, and produce a final consensus summary. The team reviewed the summary matrix and identified themes through iterative discussion.

Results: Twenty-five interviews were conducted. Patients receiving cancer treatment (n=23) had a mean age of 67 years and were predominantly white (n=19, 82.6%) and male (n=13, 56.5%); prostate cancer (n=10, 43.5%) was the most common diagnosis. Caregivers (n=2) included one white female caring for her mother and one white male caring for his spouse; their mean age was 63. Analysis yielded five themes: 1) The "flurry" around diagnosis described the six-month period after diagnosis, when administrative burden was most intense, anxiety was high, and responsibility for establishing and coordinating care was greatest. 2) Insurance complexity as a primary stressor reflected confusion and distress related to billing, high-cost medications, tiered insurance coverage, and financial assistance, sometimes resulting in treatment delays. 3) Social supporters as the “captain of the ship” highlighted the central role of informal caregivers (e.g., adult children) in coordinating logistics and providing emotional support, alongside the complementary role of clinical staff (e.g., care navigators) as key institutional resources. 4) Tools for mitigation included digital (e.g., MyChart) and analog (e.g., journaling) strategies used for care coordination and insurance issue reconciliation. 5) Patient-proposed changes to reduce burden emphasized clearer onboarding after diagnosis, such as early explanations of billing, insurance processes, financial assistance, and points of contact for additional help. One patient described wanting “a tutorial...what you do, and who you call if you have this and have that...Just like onboarding a new employee.”

Conclusions and Implications: Administrative burden is an underrecognized dimension of cancer care that shapes treatment engagement, emotional well-being, and caregiving. Findings suggest that these challenges are most acute at diagnosis and diminish when patients have strong informal or institutional support. Investment is warranted in programs that provide structured assistance with administrative tasks, early communication about billing and insurance processes, and care models that actively involve informal caregivers to help patients navigate the healthcare system. Strengthening these supports may promote more equitable, coordinated, and person-centered cancer care.