Initial efficacy
post-ostomy, cancer, UC
CANCER, FAILURE TO THRIVE, COMPLICATION, COMPLICATIONS
The decreases in the FACT-G social and functional well-being scores, which contributed to decrease in the FACT-G total score in the PRISMS patients compared to their UC counterparts, were likely related to study completion. PRISMS provided integral support and education in terms of symptom/complication monitoring and management as well as function recovery during post-ostomy creation recovery, and thus, the PRISMS participants may need time develop self-management confidence and become independent upon study completion. This is significant because we conducted the study during the COVID-19 pandemic when patients and their families had limited access to their treatment team and other supportive care resources. The UC participants only had the printed information to guide post-ostomy self-care from the time of ostomy creation, and thus, had longer time of post-surgical adjustment. We plan to strengthen our wrap-up encounter between the WOCN and PRISMS participants to enhance their confidence and facilitate the transition to self-management. In addition, based on the feedback from our clinical providers, patients, and caregivers, we will expand the follow-up from 60 to 90 days post-surgery in our future efficacy trial so patients and caregivers have the reassurance and support to continue managing the risks of complications and readmission.The promising results of the preliminary effects indicate that PRISMS has the potential to improve the QOL of patients and caregivers during post-surgical care transition. Although the results of the group differences in QOL, symptoms, and caregiver burden were mostly nonsignificant, there is a positive trend over time among PRISMS patients in the FACT-G subscale scores of physical and emotional well-being among patients and caregivers, respectively. There was also a downward trend in the use of healthcare services and in caregiver burden in the PRISMS patients and caregivers, respectively. Per our analysis of the survey and post-exit interview data, participants reported that the UC education pamphlets were technical, lacked information tailored to patient needs, and did not provide sufficient demonstrations of self-management skills that patients and caregivers could access when needed. Although the research nurse was available to both PRISMS and UC participants, our post-hoc analysis indicated that PRISMS participants contacted the research nurse more frequently than the UC participants, which was likely triggered by the PRISMS education (including text and video demonstrations), skills training, monitoring, and highly tailored and personalized self-management information, all of which was written in plain language and available on-demand. These PRISMS components helped participants recognize symptoms and potential complications and facilitated communication with the research nurse and/or their own treatment team when the symptoms and complications were mild and/or during early onset. Participants reported that PRISMS was useful in the surveys and beneficial during the post-exit interviews. PRISMS participants especially liked the interaction with the WOCN compared to the UC participants whose contact with the WOCN was based on their willingness. Although the group differences in patient healthcare utilization were not statistically significant, one UC patient passed away before completing T2 due to failure to thrive. Thus, PRISMS addressed the care needs of ostomates and their caregivers by providing comprehensive support for symptom- and complication-management. Using an eHealth platform, PRISMS empowers ostomates and caregivers by providing easy and equal access to on-demand, critical education, skills training, monitoring, and self-management information. PRISMS also allows healthcare professionals to triage care for ostomates based on symptom and complication severity and reduce burdens on healthcare professionals. Barriers that challenge PRISMS use include low internet penetration, limited availabilities of digital devices, and low digital and health literacy in low-resource settings. However, compared to current practices, using PRISMS will enable WOCNs to provide the highly specialized care more efficiently and to more patients who may otherwise have to travel long distance to access wound and ostomy care, and thus, expanding their critical role from the hospital to homes in low-resource communities. The increased accessibility, educational content, and enhanced communication may increase patient and caregiver awareness of health and post-surgical changes during the most crucial time of post-ostomy recovery (the first 60–90 days) and reduce the severity of preventable post-ostomy symptoms and complications, which optimizes value-based care delivery. We caution that a confirmatory interpretation of the initial efficacy findings reported in this study should be avoided, due to potential imbalance between UC and PRISMS participants because of the small sample size during the COVID-19 pandemic. However, there is a need for a definitive trial with sufficient power to test the effects of PRISMS on the health outcomes of cancer patients and their family caregivers.