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

INTRODUCTION: 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. METHODS: A mixed methods study was undertaken prospectively to investigate utility and patient satisfaction with a newly introduced PIFU scheme. RESULTS: Two hundred and twenty-eight women were enrolled onto PIFU in the first 18 months, median age 65 years (range 42-90 years). Twenty-four (10.5%) women were non-British White ethnicity. Forty-five women contacted the Clinical Nurse Specialist (CNS) at least once (19.7%), the primary reason being vaginal bleeding/discharge (42%). Contact was greater in first six months on the scheme compared to the second 6 months, and women who made contact were significantly younger than those who did not (57 years vs. 65 years, p < 0.001). CONCLUSIONS: 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 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.