Establishment and application of the “electronic follow-up platform for endometriosis” during the COVID-19 pandemic

Abstract

The management of endometriosis has been complicated by the COVID-19 pandemic. We aimed to introduce the establishment and application of a new follow-up method during the COVID-19 pandemic—the electronic follow-up (e-follow-up) platform for endometriosis—and to test the applicability of the platform-based follow-up management model and patient satisfaction. We used the platform for information entry and post-operative follow-up of 152 patients with endometriosis from January 2021 to August 2022, and compared patients’ Zung’s Self-Rating Depression Scale (SDS), Self-Rating Anxiety Scale (SAS), and Visual Analogue Score (VAS) (range: 0 − 10, indicating: no pain-extreme pain) scores preoperatively and after 6-month of follow-up, together with recording patients’ follow-up satisfaction and number of recurrence of lesions. Eventually, the SDS, SAS, and VAS scores were significantly lower than those at pre-surgery (p < .001), and the follow-up satisfaction rate reached 100%, with 91.41% expressing great satisfaction. The cumulative number of recurrences was 2 out of 138. Follow-up using this platform reduce the risk of COVID-19 transmission, enabled more efficient access to healthcare resources for patients with endometriosis, improved the efficiency of follow-up management, met the mental health needs of the patients.

Keywords:

• Endometriosis follow up
• general gynaecology
• pain
• women's health
• mental health

Introduction

Endometriosis is defined as the growth of endometrial glands and stroma in different locations outside the uterine cavity [1], which affects about 10% of women in their reproductive years worldwide [2]. Endometriosis usually presents with chronic pelvic pain, dysmenorrhea, dyspareunia, dysuria, fatigue, infertility [1], and an increased risk of depression and anxiety [3,4]. These symptoms place a significant burden on their physical and mental health, quality of life, economic situation, and healthcare systems [3,5].

Therapy for endometriosis can consist of medication and/or surgery, depending on (1) whether the patient is not amenable to medication, (2) in the presence of deep endometriosis, (3) in combination with other diseases requiring surgery, and (4) with intolerable pelvic pain or (5) infertility [6]. Even after surgery, long-term hormonal suppression is advised owing to the high rates of postoperative recurrence [7]. Currently, a definitive cure for endometriosis is lacking; therefore, the disease requires long-term individualized treatment and follow-up management. This greatly increases the frequency of patients’ medical visits and allied health consultations.

Restrictions and social isolation measures caused by COVID-19 and difficulties in accessing medical resources made the management of endometriosis even more difficult [8]. In order to centralize the long-term management of post-operative patients with endometriosis, we collaborated with Zero Krypton Technology (Beijing) Ltd. to build the “Electronic Follow-up Platform for Endometriosis.” The purpose of this manuscript is to describe the electronic platform and report on patient satisfaction with the platform.

Materials and methods

Overall, 152 patients with endometriosis were recruited at Qilu Hospital from January 2021 to August 2022. The inclusion criteria involved: consent to postoperative long-term hormonal medication and surgically and histologically confirmed diagnosis of endometriosis. Exclusion criteria included the presence of contraindications to hormonal drugs such as GnRH-a and combined oral contraceptives; psychiatric disorders limiting patient cooperation; or malignant tumors.

Establishment of the platform and formulation of follow-up work

The platform was developed by our professional endometriosis medical team in collaboration with Zero Krypton Technology (Beijing) Ltd., which includes a data collection port, a back-end input port, and a cloud service storage port. Twenty-four baseline period sections were built using the endometriosis disease characteristics and treatment protocols, which included demographics, menstrual reproductive history, imaging reports, CA-125 and other hematological indicators, surgical records, and first postoperative medication regimen and time (Figure 1). Forty-eight follow-up period sections were built using endometriosis prognosis information, like medication records, VAS score for pain symptoms similar to preoperative, ultrasound, and other examinations to record patient follow-up results at 1, 3, 6, and 12 months postoperatively (Figure 2). The follow-up management team included a chief physician, an attending physician, several follow-up managers, and platform interfacing staff. Moreover, we had also established a WeChat follow-up management group to facilitate communication among patients about their conditions, meanwhile, we interacted one-on-one with patients during the follow-up by adding their personal WeChat. The VAS score was used to assess the degree of the most pronounced pain symptom during menstruation or, for non-cyclic pelvic pain, the degree during the menstrual cycle when the pelvic pain symptom was most severe. In addition, patients’ psychological depression and anxiety levels were assessed by SDS [9] and SAS [10] questionnaires which are widely used and provide self-report measures of depression and anxiety because of good reliability, validity, and internal consistency [11,12].

Figure 1. The Chinese version of the titles of the sections included in the e-follow-up platform for endometriosis and their corresponding English translations. (a) The Chinese version of a screenshot of the titles of the baseline period panel. (b) The Chinese version of a screenshot of the titles of the general contents of the follow-up period panel. (c) The English translation of the corresponding Chinese versions in Figure 1(a,b).

Figure 2. The Chinese version of menstruation history panel in the platform and its corresponding English translation. (a) The Chinese version. (b) The English translation.

Tasks during the follow-up period which were entirely undertaken by follow-up managers include: (i) regularly reminded patients of their post-operative hormone medication and review at the nearest hospital through online follow-up, helped to inspect the examination reports and promptly reminded them to see the competent doctor for evaluation if a relapse was suspected, such as a postoperative recurrence of pain of similar magnitude to preoperative, or recurrence of lesions suggested by ultrasound; (ii) explained the type, dosage and adverse reactions of the medication, emphasized the need for long-term medication for endometriosis, instructed them to use medications (e.g. “add-back” therapy) when they had adverse reactions, provided pregnancy preparation guidance to patients with fertility requirements, e.g. three times of GnRH-a treatments were recommended if the myometrium was undamaged during surgery; otherwise six times of GnRH-a treatments followed by oral hormonal medication, with the duration of treatment increasing with the degree of myometrial damage; ovulation monitoring during pregnancy preparation; (iii) provided with psychological counseling to alleviate patients’ own adverse emotions or those caused by adverse drug reactions, etc., and encouraged them to establish good habits and reevaluated SDS, SAS, and VAS scores after 6-month of follow-up; (iv) recorded patients’ scores on their satisfaction with the follow-up management after 6-month of follow-up (telephone question: what’s your satisfaction with the format and content of the reminders and communication during our follow-up management, with a total score of 100, very satisfied: >90; basic satisfied: 60–90; unsatisfied: <60) and the necessity scores of platform existence (the total score is 3, very necessary: 3; average effect: 2; not necessary: 1). See the flow chart (Figure 3) for details on the application of the platform and the follow-up process.

Figure 3. Flowchart on the application of the platform and subsequent processes.

Patients who registered for a follow-up review would automatically generate the next review appointment. Follow-up managers logged onto the platform bi-weekly to upload patients’ preoperative information, review results, and medication dates and regimens through the data collection terminal. The back-end input port collected patients’ electronic medical records during hospitalization and reviews, AI technology was used to identify optically captured medical records, combined with the central entry system to extract and structure medical data accurately, and finally uploaded to the cloud service storage port, seamlessly linking follow-up data with treatment data.

Main observation indicators

As of August 31, 2022, limited by the short follow-up time, we set the observation endpoints as after 6-month of follow-up. The main observation indicators are as follows: (i) Changes in SDS and SAS scores; (ii) Scores of patient satisfaction and necessity of platform; (iii) Change in VAS scores (Improvement in clinical symptoms); (iv) Postoperative recurrence rate.

Ethical approval

The research was conducted in accordance with the World Medical Association Declaration of Helsinki. Written informed consent was obtained from all patients or their legal guardians if they were underage. The study was approved by the Research Ethics Committee of Qilu Hospital, Shandong University (KYLL-202111-093).

Statistical analysis

Statistical analysis was performed with SPSS 25.0. Measurement data was expressed as mean ± standard deviation or median (interquartile range), and the Wilcoxon test was used for difference analysis, while count data were expressed as a rate (%). Statistical significance was set at p < .05.

Results

As of August 31, 2022, a total of 14 out of 152 patients were lost to follow-up, with the lost to follow-up rate at 9.2% (<10.0%). Currently, a total of 138 patients have been included in the platform of which 128 patients completed 6-month follow-up. Among them, 112 cases of intra-pelvic endometriosis (peritoneal endometriosis, ovarian endometriosis, and deep endometriosis) and 26 cases of extra-pelvic endometriosis, including 20 cases of abdominal wall endometriosis and 6 cases of perineal endometriosis, were noted.

The patients’ ages ranged from 15 to 49 years, with a mean age of 34.27 (6.52) years. Of the patients, 97.8% reported discomfort, and 10.9% reported non-cyclic chronic pelvic pain. The average VAS score was 5.00 (5.00), and 48.6% of patients needed painkillers. In patients with intra-pelvic endometriosis, 88.4% had ≥3 clinical symptoms of which dysmenorrhea, fatigue, and changes in bowel habits (constipation or diarrhea) were more frequently reported, and dyschezia was seen in some patients with deep endometriosis. Patients with the abdominal wall and perineal endometriosis all presented with tender masses on the body surface. Patient characteristics at baseline are reported in Table 1.

Table 1. Baseline characteristics of the 138 patients with endometriosis.

Characteristics	All Patients n = 138	Intra-pelvic Endometriosis n = 112	Extra-pelvic Endometriosis n = 26
Age (years)	34.27 ± 6.52	34.16 ± 6.89	34.73 ± 4.64
BMI (kg/m²)	22.05 (4.20)	21.56 (3.78)	24.25 ± 3.21
Age at menarche (years)	13.00 (2.00)	13.00 (2.00)	13.00 (2.00)
Menstrual cycle length [n (%)]
<26 d	49 (35.5)	42 (37.5)	7 (26.9)
26–31 d	75 (54.3)	59 (52.7)	16 (61.5)
32–50 d	13 (9.4)	10 (8.9)	3 (11.5)
>51 d or too irregular	1 (0.7)	1 (0.9)	0 (0.0)
Parity [n (%)]
0	63 (45.7)	63 (56.3)	0 (0.0)
1	42 (30.4)	34 (30.4)	8 (30.8)
≥2	33 (23.9)	15 (13.4)	18 (69.2)
Ovarian surgery history [n (%)]	15 (10.9)	15 (13.4)	0 (0.0)
Combined adenomyosis [n (%)]	45 (32.6)	40 (35.7)	5 (19.2)
Combined uterine fibroids [n (%)]	35 (25.4)	32 (28.6)	3 (11.5)
Surgical findings [n (%)]
Peritoneal lesions	28 (20.3)	28 (25.0)	0 (0.0)
Deep endometriosis	27 (19.6)	27 (24.1)	0 (0.0)
Pelvic adhesion	102 (73.9)	101 (90.2)	1 (3.8)
Surgery type [n (%)]
Laparoscopy	103 (74.6)	103 (92.0)	0 (0.0)
laparotomy	29 (21.0)	9 (8.0)	20 (76.9)
Perineal lesion excision	6 (4.3)	0 (0.0)	6 (23.1)
With symptoms [n (%)]	135 (97.8)	109 (97.3)	26 (100.0)
VAS^a	5.00 (5.00)	6.00 (5.75)	5.58 ± 2.23
Symptoms [n (%)]
Acyclic pelvic pain	15 (10.9)	13 (11.6)	2 (7.7)
Dysmenorrhea	124 (89.9)	109 (97.3)	16 (61.5)
Fatigue	124 (89.9)	102 (91.1)	22 (84.6)
Dyspareunia	39 (28.3)	31 (27.7)	8 (30.8)
Tender masses on body surface	27 (19.6)	1 (0.9)	26 (100.0)
Changes in defecation habits (constipation or diarrhea)	93 (67.4)	80 (71.4)	13 (50.0)
Changes in micturition habits (frequent or urgent urination)	57 (41.3)	48 (42.9)	9 (34.6)
Nausea and (or) vomiting	21 (15.2)	21 (18.8)	2 (7.7)
Dyschezia	19 (13.8)	19 (17.0)	0 (00.0)
Fainting	33 (23.9)	32 (28.6)	2 (7.7)
Headache	40 (29.0)	38 (33.9)	2 (7.7)
≥3 clinical symptoms	119 (86.2)	99 (88.4)	20 (76.9)
Endometriosis stage [n (%)]
III	–	43 (38.4)	–
IV	–	69 (61.6)	–
Previous medical treatment [n (%)]
Painkillers	67 (48.6)	58 (51.8)	9 (34.6)
NSAIDS	53 (38.4)	46 (41.1)	7 (26.9)
Hormonal drugs	32 (23.2)	28 (25.0)	4 (15.4)
SDS scores	46.88 (22.81)	48.75 (22.50)	39.38 (21.25)
<50	77 (55.8)	58 (51.8)	19 (73.1)
50–59	29 (21.0)	25 (22.3)	4 (15.4)
60–69	24 (17.4)	21 (18.8)	3 (11.5)
≥70	8 (5.8)	8 (7.1)	0 (0.0)
SAS scores	40.00 (14.06)	40.00 (16.25)	35.81 ± 6.54
<50	106 (76.8)	80 (71.4)	26 (100.0)
50–59	24 (17.4)	24 (21.4)	0 (0.0)
60–69	2 (1.4)	2 (1.8)	0 (0.0)
≥70	6 (4.3)	6 (5.4)	0 (0.0)

^aThe VAS was assessed as the most prominent pain symptoms at the time of diagnosis.

SDS and SAS scores

Fifty-nine of the 128 patients who had completed the 6-month follow-up showed depressive symptoms preoperatively, of which 29 were mild, 23 were moderate and 7 were severe; 30 patients showed anxiety symptoms, of which 22 were mild, 1 was moderate and 6 were severe. The mean SDS score preoperative and after 6-month of follow-up were 47.50 (23.75) and 30.63 (12.50) respectively; the mean SAS score preoperative and after 6-month of follow-up were 40.00 (14.69) and 27.00 (6.25) respectively. There was a significant decrease in both SDS (p<.001) and SAS (p<.001) scores (Figure 4).

Figure 4. The comparison of SDS, SAS, and VAS scores before surgery and after 6-month follow-up in 128 patients with endometriosis. (a) The SDS scores had significantly decreased (p<.001). (b) The SAS scores had significantly decreased (p<.001). (c) The VAS scores had significantly decreased (p<.001). ****p ≤ .001.

Scores of patient satisfaction and necessity of platform

The follow-up satisfaction rate reached 100.0%, of which 91.4% patients were very satisfied. 87.5% of patients said the platform was very essential for their post-operative treatment, while 12.5% said the effectiveness were fair.

Improvement in clinical symptoms

The mean VAS score was significantly decreased to 0.00(2.00) after 6-month of follow-up compared to preoperative (p<.001) (Figure 4).

Postoperative recurrence

As of August 31, 2022, the cumulative number of recurrences was 2 out of 138.

Discussion

Endometriosis is a common estrogen-dependent, chronic, neuro-inflammatory gynecological disorder with a heterogeneous and complex presentation. Symptoms of endometriosis include several signature yet nonspecific types of pain, an increased risk of infertility, and widespread fatigue, and even lead to an elevated risk of developing emotional distress, especially depression and anxiety disorders [3,4].

Although surgical treatment can help relieve clinical symptoms, restore anatomy, and improve fertility outcomes [13], more than half of the patients had persistent pain or even a second surgery within 5 years after surgery [14,15], and postoperative recurrence rate increases with longer follow-up [16]. It is crucial to improve postoperative hormonal medication to shrink and degenerate residual lesions and reduce the recurrence of dysmenorrhea symptoms [7].

Given the particularities of endometriosis, it is recommended that clinicians implement long-term standardized follow-up management. Patient-centered care could lead to better health-related outcomes [17]. Additionally, some psychological studies of endometriosis have found a positive correlation between coping styles and improvement of depression and anxiety symptoms [18]. This suggests that positive psychological interventions [19] are applicable in the treatment and follow-up management of patients with endometriosis.

The COVID-19 pandemic had resulted in restrictions and social segregation, challenging the management of endometriosis worldwide. A study conducted in Turkey showed that 83.9% of endometriosis patients were worried about suffering endometriosis-related problems during the pandemic, and 53.63% believed their treatment was affected [8]. Virtual care seems to be a good alternative for endometriosis patients in circumstances where physical consultations are not possible during the outbreak [20].

According to our results, surgery combined with medication for endometriosis can significantly improve patients’ clinical symptoms. Platform-based electronic follow-up management made the management of endometriosis during the epidemic more convenient and efficient, optimized the allocation of medical resources, reduced patient mobility and the risk of COVID-19 transmission. Through regular communication with patients, timely reminding for medication, and review and answering to questions and concerns about treatment could help build confidence in the treatment and reduce the rate of self-retreat caused by lack of awareness and side effects. Meantime, patients had reduced levels of depression and anxiety. By advising on medication and ovulation monitoring during pregnancy preparation, we helped patients find the best time to conceive. Moreover, we have achieved better patient satisfaction compared to platform-independent routine care [21].

This study doesn’t reflect the platform’s management of patients who refused hormonal medication postoperatively. Additionally, unavoidable surgical stress might have led to elevated preoperative SAS scores. It was difficult to clarify whether changes in SDS and SAS scores were entirely attributable to platform management with surgery and the lack of a platform-independent control group. Increasing patient sample size through multi-center recruitment, extending the follow-up period, and setting clear observational endpoints can better investigate postoperative recurrence and pregnancy and improve the credibility of the study.

Conclusions

The e-follow-up platform for endometriosis helped overcome time and space constraints, enabled more efficient access to healthcare resources for patients, greatly mitigated the impact of the pandemic on medical work, enhanced the efficiency of follow-up management, reduced patient anxiety and depression, and received excellent patient feedback. The establishment of a rich database is expected to improve the efficiency of scientific research.

Acknowledgments

The authors are grateful to Professor Guoyun Wang for the guidance on this study, and to Zero Krypton Technology (Beijing) Ltd. for their great help and support in building and applying the platform.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Data availability statement

The data that support the findings of this study cannot be shared at this time as the data are also part of an ongoing study.

Additional information

Funding

This study was funded by the National Key R&D Program of China (No. 2022YFC2704000), the Major Basic Research of Natural Science Foundation of Shandong (grant number ZR2021ZD34) and the National Science Foundation of China (grant numbers 82071621).