Partnering with healthcare facilities to understand psychosocial distress screening practices among cancer survivors: pilot study implications for study design, recruitment, and data collection

BACKGROUND: We sought to understand barriers and facilitators to implementing distress screening (DS) of cancer patients to inform and promote uptake in cancer treatment facilities. We describe the recruitment and data collection challenges and recommendations for assessing DS in oncology treatment facilities. METHODS: We recruited CoC-accredited facilities and collected data from each facility’s electronic health record (EHR). Collected data included cancer diagnosis and demographics, details on DS, and other relevant patient health data. Data were collected by external study staff who were given access to the facility’s EHR system, or by facility staff working locally within their own EHR system. Analyses are based on a pilot study of 9 facilities. RESULTS: Challenges stemmed from being a multi-facility-based study and local institutional review board (IRB) approval, facility review and approval processes, and issues associated with EHR systems and the lack of DS data standards. Facilities that provided study staff remote-access took longer for recruitment; facilities that performed their own extraction/abstraction took longer to complete data collection. CONCLUSION: Examining DS practices and follow-up among cancer survivors necessitated recruiting and working directly with multiple healthcare systems and facilities. There were a number of lessons learned related to recruitment, enrollment, and data collection. Using the facilitators described in this manuscript offers increased potential for working successfully with various cancer centers and insight into partnering with facilities collecting non-standardized DS clinical data.