Follow-up practice in endometrial cancer and the association with patient and hospital characteristics: A study from the population-based PROFILES registry
Highlights
► 19% of endometrial cancer survivors received more follow-up than recommended by the guidelines, mainly in follow-up years 6–10 (27%). ► Although most survivors felt comfortable with their follow-up schedule, survivors in follow-up years 6–10 more often preferred no follow-up. ► Factors associated with more overconsumption of follow-up care were follow-up year, hospital of treatment, comorbidity, and worry.
Introduction
Endometrial cancer is the most common gynecologic malignancy in Western countries, with an incidence of 15–25 per 100,000 women annually [1], [2]. The majority of these women (i.e., more than 75%) are diagnosed at an early stage (i.e., FIGO stages I and II), and have an excellent prognosis, as indicated by the overall 5-year survival rate of 80% in the US and The Netherlands [1], [2], [3].
After primary treatment, women with endometrial cancer are monitored in routine follow-up based on periodic visits for several years after treatment. The primary rationale for follow-up is to timely identify disease recurrence, in order to improve survival and/or quality of life [4], [5]. In addition, follow-up may provide psychosocial support [6] and can be reassuring for patients [7]. However, intensive follow-up schedules require considerable financial resources [6], [8], [9], and can increase patients' anxiety [7].
The frequency of follow-up visits of endometrial cancer survivors has been a continuing area of discussion in the past years, due to limited evidence whether intensive follow-up schedules are more or less beneficial than non-intensive follow-up schedules [4], [10]. The recurrence rate for early stage endometrial cancer is relatively low, ranging from 3 to 17%, depending on primary and adjuvant treatment [4], [11], [12]. Most recurrences (i.e., 70%) occur within three years after diagnosis [10], [13], and in patients that present with new symptoms between scheduled visits [4], [11], [14], [15]. Therefore, it has been suggested that follow-up has limited clinical benefit [8], [16], and that the number of follow-up visits of endometrial cancer survivors, particularly those diagnosed at an early stage, might be decreased while the quality of care remains adequate [17], [18].
Guidelines for follow-up of endometrial cancer lack evidence-based knowledge and vary in recommended follow-up strategies [14]. Previous studies have shown large variations in follow-up practice in endometrial cancer between different countries and institutions [5], [10], [14], [16], [19], [20]. However, these studies have not investigated which factors may be associated with follow-up consumption.
Understanding the factors associated with consumption of follow-up care might help health care providers to better organize the follow-up of endometrial cancer survivors. The aim of the present study was therefore to examine to what extent endometrial cancer survivors experienced follow-up according to the Dutch guidelines, and to identify associations between consumption of follow-up care and socio-demographic and clinical characteristics. As previous research has shown that treatment can have long-term consequences on the Health-Related Quality of Life (HRQL) of endometrial cancer survivors [21], and that patients with heightened anxiety levels may request more long-term follow-up [22], the aim of the present study was also to identify associations between consumption of follow-up care and HRQL and worry. In addition, patients' preferences regarding the follow-up were evaluated.
Section snippets
Setting and participants
A cross-sectional study was performed among 1091 endometrial cancer survivors registered within the Eindhoven cancer registry (ECR) of the Comprehensive Cancer Center South (CCCS). The ECR records data on all patients newly diagnosed with cancer in the southern part of the Netherlands, an area with 10 hospitals serving 2.3 million inhabitants. The ECR was used to select patients diagnosed with endometrial cancer between January 1st 1999 and October 1st 2007 in 10 hospitals. All individuals (age
Study population
Of the 965 endometrial cancer survivors who were sent a questionnaire, 742 (77%) returned a completed questionnaire. Of the patients who returned a completed questionnaire, 46 (6%) patients had received less than 1 year follow-up, 96 (13%) had an additional malignancy, and 23 (3%) patients had recurrent disease and were therefore excluded (Fig. 1). Respondents were younger than non-respondents (p < 0.001), with a mean age of 66.7 years (range 26.8-84.6). Details of the characteristics of
Discussion
In the present study, most endometrial cancer survivors reported to have received follow-up according to the national guidelines. However, there was substantial variation in follow-up practice, with both over- and underconsumption. A large group of survivors, particularly in follow-up years 6–10, reported to have received follow-up care more frequently than recommended. On the other hand, a substantial percentage of survivors in follow-up year 1 indicated that they received less follow-up
Authors' contributions
In collaboration with the OOG-CCCS (Organization Oncologic Gynecology of the Comprehensive Cancer Center South), LP, CV, DB, JP, and RK contributed to the concept and design of the study. LP, CV, DB, JP, ML, and RK contributed to the acquisition of the data. KN analyzed the data and drafted the manuscript. All authors provided input into revisions of the manuscript and have approved the final manuscript.
Role of funding source
Data collection and data dissemination for this study were funded by the Comprehensive Cancer Center South, Eindhoven, The Netherlands and an investment grant of the Netherlands Organization for Scientific Research (NWO #480-08-009), The Hague, The Netherlands. Dr. Lonneke van de Poll-Franse is supported by a Cancer Research Award from the Dutch Cancer Society (#UVT-2009-4349). The funding sources had no involvement in the study design, the collection, analysis, and interpretation of data, the
Conflict of interest statement
All authors declare that they have no conflicts of interest regarding this manuscript.
Acknowledgments
We would like to thank all patients and their doctors for their participation in the study. Special thanks go to Dr. M. van Bommel, who was willing to function as an independent advisor and to answer questions of patients. In addition, we want to thank the following hospitals for their cooperation: Amphia Hospital, Breda; Catharina Hospital, Eindhoven; Elkerliek Hospital, Helmond and Deurne; Jeroen Bosch Hospital, 's Hertogenbosch; Maxima Medical Center, Eindhoven and Veldhoven; Sint Anna
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