"The problem is not detection, it is treatment": exploring why women needing pre-cervical cancer care are lost to follow-up at the hospital in Iquitos, Peru.

backgroundThe objective of this study was to explore the barriers to follow-up - as well as potential ways to reduce these - of women with cervical lesions suspicious for cancer who were ineligible for primary-level treatment and needed, but did not receive, hospital-level follow-up in Iquitos, Peru.

methodsIn-depth, semi-structured interviews were conducted with 18 HPV-positive women requiring hospital-level follow-up but for whom there was no documentation of completion regarding their experienced barriers to follow-up and suggestions to reduce these barriers. After thematically analyzing these patient interviews, interview findings about these topics were presented to seven doctors and five nurse-midwives at both the hospital and primary care levels. Finally, 19 health authorities and professionals discussed all findings and identified action steps for systems-level changes at a group model building workshop.

resultsPatient-identified barriers to hospital care were mainly: (1) a limited patient understanding of follow-up or treatment steps (both prior to and after the hospital visit), and (2) administrative challenges to obtaining appointments or follow-up care at the hospital. Patients identified the utility of a patient navigator for this process to reduce these barriers. The healthcare professionals concurred with the barriers identified by the patients and the suggestion of a patient navigator, but further elucidated suggestions for change, including (1) differentiating referral for those with suspicion for cancer to prioritize those patients when referred to the hospital, (2) increasing information flow between the different levels of care through an integrated patient registry, and (3) improving provider education regarding HPV and the standard of care. The group model building workshop served as a space to discuss findings and action items that could potentially make these changes possible to ultimately improve the continuum of care.

conclusionsDespite an overall increase in follow-up for HPV-positive women since the implementation of the new HPV-based screen-and-treat program, women suspicious for cervical cancer are still being lost to follow-up after being referred to the hospital. Systems-level improvements should focus on improving information about patient flow across the continuum of care for health providers and hospital staff (who make appointments), strengthening referral systems between primary and tertiary level providers through an integrated patient registry, improving health education on HPV and screening for patients, and establishing a patient navigation system.