Survivor-identified barriers and facilitators to acute phase recovery following radical cystectomy.

OBJECTIVES

To understand the unmet needs of bladder cancer survivors in the acute recovery after cystectomy and how remote monitoring may improve their care. These results are part of user-centered design studies on a remote monitoring recovery aid.

METHODS

We invited bladder cancer survivors who underwent a radical cystectomy and their support persons from bladder cancer survivorship groups. We conducted semi-structured interviews regarding participants' experiences during recovery from cystectomy, their perspectives regarding unmet needs, and the resources they used during the perioperative period, emphasizing the 2 weeks following hospital discharge. Transcripts were coded using a deductive/inductive approach. Coded excerpts were summarized to develop themes and subthemes. Findings were refined as needed by consensus to accurately capture participants' experiences.

RESULTS

A total of 20 bladder cancer survivors and 5 primary support persons were included. Patient participants were on average 3 years from their cystectomy. Barriers to acute recovery were categorized into system- and patient-level challenges, including difficulty connecting with knowledgeable providers and with information, as well as mental/emotional and physical hurdles. Three key facilitators to patients' acute recovery following cystectomy included identifying indicators of physical progress, facilitating access to provider recommendations, and implementing the survivor perspective into recovery support.

CONCLUSIONS

This study classified barriers and facilitators to cystectomy recovery. The majority of participants expressed interest in remote monitoring programs. Opportunities exist for stakeholders to improve the acute recovery experience for cystectomy patients through mobile interventions delivered via smartphones and wearable devices.