Acceptability and utilisation of patient - initiated follow - up (PIFU) for endometrial cancer amongst women from diverse ethnic and social backgrounds: a mixed methods study

A shift in focus towards risk stratification and survivorship in early stage endometrial cancer (EC) has led to the replacement of hospital follow-up (HFU) with patient-initiated follow-up (PIFU) schemes. A mixed-methods study was undertaken prospectively to investigate utility and patient satisfaction with a newly introduced PIFU scheme. 228 women were enrolled onto PIFU in the first 18 months, median age 65 years (range 42-90 years). Twenty-four (10.5%) women were of non-British White ethnicity (non-BW). Forty-five women contacted the CNS at least once (19.7%) with the primary reason being vaginal bleeding/discharge (42%). Contact was greater in first six months of entering the scheme as compared to the second six months and women who made contact were significantly younger than those who did not (57 years versus 65 years, p<0.001). PIFU appears to be well received by the majority of women. Although many of the CNS contacts were due to physical symptoms, a number were for psychological support or reassurance. Younger women had greater CNS contact indicating that they may benefit from a greater level of CNS support. Patient feedback of the PIFU scheme was positive, with many women reporting that it enabled them to have more control over their own health.