The National Comprehensive Cancer Center Network is a network of 33 nonprofit, NCI-designated academic cancer centers. Each has a best practice committee that filled out the survey. The survey had questions “regarding center volume, eligibility assessment, caregiver/housing requirements, available modifications to therapy (such as telehealth use or inpatient admission), contraindications and policies for assessment, consent process, and staffing.”
One major observation was a large disparity in how centers interact with the caregivers needed for support treatment, largely compromised of unpaid family and friends of the patient. Much of the caregiving requirement depends on the treatment: CAR T only requires a month of caregiving while HCT requires up to four months. However, the requirements or allowances for caregivers varied greatly from institution to institution. Many centers required caregivers for outpatient care–some at 24/7 availability—for over 100 days. Most at least allowed the caregiver assignment to rotate between multiple individuals. While some institutions supported the cost for paid caregivers, others banned paid workers entirely. If caregivers were not available, some hospitals got “creative” by admitting people to the hospital for the duration of their care.
The majority of centers required patients to find local housing, meaning somewhere to stay no more than 120 minutes away from the center; others required a max time of 30 to 60 minutes to reach the hospital. This is a challenge because most centers in the National Comprehensive Cancer Center Network are located in densely populated, expensive cities. Although some centers allowed telehealth appointments for follow-up, this was not a standard practice.
Living situation was not just an issue for long distance patients: homelessness was considered an exclusion criterion for both HCT and CAR T therapy in about half of the centers that reported their exclusion criteria. Other exclusion criteria were lack of insurance (in over half of the centers surveyed), substance use, or medication non-adherence.
The survey had space for each center to rank what the providers felt the most common barriers to treatment were. For autologous HCT, allogeneic HCT, and CAR T, the top three barriers were 1) caregiver availability, 2) finding local housing, and 3) insurance or out-of-pocket costs.