Patient‐initiated follow up affects fear of recurrence and healthcare use: a randomised trial in early‐stage endometrial cancer

Abstract

Why and how was the study carried out? Follow up of women with endometrial cancer is resource consuming and previous research suggests that it is not effective. Even though the women benefit from reassurance at follow up, routine examinations may also remind the women of the disease and induce fear of cancer recurrence. Furthermore, routine follow up may delay recurrence diagnosis, because the women do not report their symptoms until the next scheduled visit. In the research explained in this article, patient-initiated follow up was evaluated as an alternative to traditional follow up. The women were randomly assigned to one of two follow-up programmes: regular gynaecological examinations at the department of gynaecology or self-referral with careful instruction in alarm symptoms, that is, patient-initiated follow up. The level of fear of cancer recurrence in the two groups was obtained by questionnaires. Information on healthcare use was obtained by questionnaires and a chart review. What were the main findings? Regular examinations at the department of gynaecology reduced the fear of cancer recurrence significantly more than patient-initiated follow up, though the difference was small. Women who were instructed in alarm symptoms, under self-referral, were able to monitor their symptoms, and this approach significantly reduced the number of examinations at the department of gynaecology. What are the limitations of the work? Participants in the self-referral group knew that they were examined less than other women, and this may have induced fear of cancer recurrence. Similarly, the regular completion of questionnaires regarding fear of cancer recurrence may have reminded the women of the disease and diminished the difference between the two groups. What are the implications for patients Patient-initiated follow up reduced healthcare use but maintained fear of cancer recurrence in women who had survived early-stage endometrial cancer. Future analyses on quality of life and cost-effectiveness are needed to balance the benefits and harms of patient-initiated follow up.

Nurse‐led follow‐up in survivorship care of gynaecological malignancies—A randomised controlled trial

“…These are important findings, as a wide host of studies have noted that the recurrence of endometrial and ovarian cancers is often symptomatic, with figures for endometrial cancer ranging from TA B L E 2 Questionnaires and symptom checklist data at 0-2, 2-5 and >5 years after treatment completion TA B L E 3 Anxiety as categorical data at 0-2, 2-5 and >5 years after treatment completion 40% to 91% (Fung- Kee-Fung et al, 2006;Sartori et al, 2010). Yet is noteworthy to remember that a proportion of recurrences were reported as interval events and detected in between FU (Jeppesen et al, 2017), highlighting the need for an accessible on-demand channel such as patient-initiated FU (Jeppesen, Jensen, Hansen, Christensen, & Mogensen, 2018;Kumarakulasingam et al, 2019) through which symptoms may be reported on view to increase the detection and facilitate swifter management of recurrent disease.…”

Exploring the acceptability and feasibility of patient-initiated follow-up for women treated for stage I endometrial cancer

“…A recent UK study has reported that PIFU is well received by women treated for endometrial cancer, although younger women (median age 57 years) initiated more contact with health care staff, indicating they needed a higher level of support (Kumarakulasingam et al, 2019). A study carried out in Denmark reported that PIFU for endometrial cancer patients (n = 156) was feasible and potentially cost effective but patients in the PIFU arm indicated significantly higher levels of fear of recurrence than in the hospital follow-up arm of the study (reported difference of −5.9; 95% CI -10.9 to −0.9, p = 0.02) (Jeppesen et al, 2018). It was speculated that the increased responsibly put on women to detect signs of recurrence may have increased levels of stress (Jeppesen et al, 2018).…”

British Gynaecological Cancer Society recommendations and guidance on patient-initiated follow-up (PIFU)

“…It is very important that patients are given written information about PIFU, which includes the contact details should they need them. Most patients find PIFU acceptable 17 , although younger patients and those who struggle to access healthcare (due to socio-demographic factors) may require the additional support 18 Although there was no patient representative at the BGCS PIFU meeting, there has been positive feedback from patients within the hospitals that have already implemented the guidelines and in studies that looked at patient acceptability [17][18][19] .…”