102 Background: Patients with colorectal cancer (CRC) and their caregivers often describe the extra clinic visit to disconnect the 46-hour 5-fluorouracil (5-FU) pump as burdensome. In COLONTOWN, a large online support and education community, we observed some patients or their caregivers self-disconnect the pump at home, which intrigued other members. We therefore explored pump disconnect experiences and their impact on patients and caregivers. Methods: A descriptive online survey was conducted July 30-August 21, 2025 among COLONTOWN’s patients/caregivers who had experience with 5-FU regimens. Survey questions focused on the selection of “pills” or “pump,” treatment experiences, and the impact of self-disconnect versus disconnect at a center for pump users. Descriptive statistics were used to quantify and summarize responses. Results: Of 276 total respondents, 90% were US-based and largely received treatment at NCI/academic institutions (30%), large health systems (31%), or community hospitals (27%). The respondents skewed to Stage 4 (66%), consistent with COLONTOWN’s membership. At least one treatment with 5-FU was reported by 253 respondents, of which, 40 reported self-disconnect. The majority of patients on 5-FU were not given the option to self-disconnect (n=165): 48% reported no discussion of it and 15% were told it was not an option. More patients who self-disconnected (85%) versus those who disconnected at a center (32%) found it ‘not at all’ a burden. Almost all of the self-disconnect patients (91%) felt comfortable and safe completing the disconnect and 93% would choose to do it again. Those who self-disconnected were most interested in it because of time savings (45%) and schedule freedom (37.5%). One respondent shared, “It was so freeing to not have another appointment. I could clamp the line and disconnect myself on my own time!” Those who disconnected at a center reported multiple time and cost impacts, including significant travel time. Notably, 63% of those disconnecting at a center traveled > 30 minutes round trip for disconnect. Among those who did not self-disconnect, 58% would have been ‘very likely’ to self-disconnect ‘most/all of the time’ if given the option. Conclusions: Our findings revealed patients perceive self-disconnect as a positive means to more agency in their cancer journey, yet it is rarely offered. This is surprising, considering its feasibility, ease of learning, and patient benefits. Greater attention is needed to encourage wider availability and adoption of self-disconnect options. Additional opportunities to enhance patient agency should be explored with communities like COLONTOWN serving as catalysts for patient-to-patient learning and innovation.
Clauer et al. (Sat,) studied this question.