Factors Influencing Fear of Progression in Endometriosis: A Path Analysis Using the Common-Sense Model

Introduction

Endometriosis (EMS) is a benign estrogen-dependent inflammatory disease characterized by the presence, growth, and infiltration of endometrial tissue outside the uterus, affecting an estimated 5–10% of women of reproductive age worldwide.¹ This condition is associated with a spectrum of symptoms including but not limited to dysmenorrhea, chronic pelvic pain and infertility.² Current pharmacological and surgical treatments have limitations, including high recurrence rates and potential impairment of ovarian function.³ As an incurable chronic condition, the unpredictability of its pain, the threat to fertility, and the erosion of social function expose patients to persistent psychological distress.^4,5

Fear of Progression (FoP) was defined as an individual’s pervasive apprehension arising from concerns about the physical, psychological, and social ramifications of disease exacerbation or recurrence.⁶ Moderate levels of FoP may trigger adaptive disease-related behaviors, while long-term and excessive FoP is associated with functional impairment, increased negative effects, and affect prognosis and quality of life.^7,8 Notably, research has shown that the mean FoP score of patients with endometriosis-related pain is significantly higher than that of cancer patients.⁹ A cross-sectional study indicates that FoP has a direct impact on fatigue and insomnia associated with endometriosis, and may strengthen the association between endometriosis-associated pain and fatigue.¹⁰ Identifying modifiable determinants of FoP and addressing them early in patients with endometriosis are essential to foster psychological adaptation and support sustained self-management.

The Common Sense Model of Self-Regulation (CSM) provides a theoretical framework for understanding how patients adapt to disease threats, describing that when confronted with a disease threat, individuals activate illness-related information stored in memory, generate illness representations and elicit appropriate coping responses; coping strategies linked to these representations directly or indirectly influence disease outcomes.¹¹ However, individuals do not engage in self-regulation in isolation but are embedded in specific social environments. Social support, derived from emotional and instrumental resources from family and social networks, is a key component of this environment. A study examining adolescent and young adult survivors of hematopoietic stem cell transplantation found that illness perception significantly mediated the association between social constraints and fear of disease recurrence.¹² Although social constraints differ from social support, this evidence indicates that social-interpersonal factors may influence fear responses through illness perception, supporting their potential mediating role in related psychosocial pathways. In addition, some studies in health psychology have shown that social support can affect patients’ psychological distress by stimulating them to adopt a corresponding coping strategies.^13,14 Thus, we hypothesize that illness perception and coping strategies act as serial mediators in the link between social support and FoP in patients with endometriosis.

Guided by the CSM and existing empirical evidence, the proposed chained mediation framework is illustrated in Figure 1. This study hypothesizes that social support can exert an influence on FoP through the chained mediation of illness perception and coping strategies. By verifying the aforementioned hypotheses, we further analyze the pathways of various influencing factors, thereby providing a theoretical basis for formulating corresponding interventions. Integrated with the self-regulatory model, this study focuses on FoP and its underlying mechanisms in endometriosis patients, addressing the deficiencies in the theoretical mechanism of previous studies.

Figure 1 The hypothetical mediation model of the relationship between social support and fear of progression.

Materials and Methods

Participants and Procedures

A cross-sectional study design was used to collect data from August 2024 to February 2025 from a tertiary hospital in Hangzhou, Zhejiang Province, China. The inclusion criteria for patients were as follows: (a) met the diagnostic criteria of the Guidelines for the Diagnosis and Treatment of Endometriosis;¹⁵ (b) aged 18 years or older; and (c) ability to complete the survey independently or with assistance, such as having someone read the questions. Exclusion criteria included patients with severe somatic diseases such as combined cardiac, pulmonary, renal and malignant tumors.

Based on Kendall’s¹⁶ sample size estimation method, the sample content was 5–10 times the number of variables. This study included 23 variables, and to account for potential invalid questionnaires, the sample size was expanded by 10%-20%, with the final sample size determined to range from 138 to 276.

For the research project, the content and purpose of the study were fully explained to the participants by a trained investigator. After the patients agreed to participate in the study, the questionnaires were administered face-to-face on the spot by the investigator. Each study participant completed the questionnaire in about 20 min. The questionnaires were withdrawn after the investigator confirmed that there were no missing items in the completed questionnaires. All information obtained in this study was kept strictly confidential. This study was approved by the Ethics Committee of the Obstetrics and Gynecology Hospital, School of Medicine, Zhejiang University, China (IRB-20240225-R). All procedures complied with the Declaration of Helsinki.

Measures

Sociodemographic Characteristics and Clinical Information

Sociodemographic (age, place of residence, education level, marital status, employment status, mode of payment for medical care, monthly per capita family income, fertility intentions), clinical (presence of chronic disease and history of surgery), and endometriosis-related information (disease duration, type of pain, and disease recurrence) were collected.

Fear of Progression

The Fear of Progression Questionnaire-Short Form (FoP-Q-SF), originally developed by Mehnert,¹⁷ was adapted into a Chinese version by Wu Qiyun¹⁸ in 2015. The questionnaire includes 12 items across two dimensions: social family and physiological health. Each item was scored using a 5-point Likert scale with a total scale score of 12 to 60, with higher scores being associated with greater fear of progression. A total score of 34 or more indicates a clinically dysfunctional level of fear. The total Cronbach’s alpha for the Chinese version of the FoP-Q-SF was 0.883.¹⁹ Cronbach’s alpha of the scale in this study was 0.880.

Social Support

The Social Support Rating Scale (SSRS), developed by Xiao Shuiyuan,²⁰ has 10 items and is divided into three dimensions, namely subjective support, objective support and utilization of support. Items are scored on a Likert level 4 or multiple scale, with higher scores indicating higher levels of social support. Cronbach’s alpha of the scale in this study was 0.734.

Illness Presentation

The Brief Illness Perception Questionnaire (BIPQ) was an assessment of the patients’ feelings and cognition of the diseases.²¹ It consists of 9 items, among which eight items are scored from 0 (not at all) to 10 (severely affects the life), and 1 item is an open question, asking the patients to list the 3 most important causes of the disease. A higher score indicates a more negative illness perception. The Chinese version of the BIPQ demonstrates good reliability and validity, with an internal consistency coefficient of 0.81and criterion-related validity of −0.671.²² Cronbach’s alpha of the scale in this study was 0.717.

Coping Strategies

Medical Coping Modes Questionnaire (MCMQ) was developed by Feifel,²³ revised by Jiang Qianjin²⁴ and introduced into China to evaluate patients’ coping strategies with diseases. The scale is divided into three kinds of coping strategies: confrontation, resignation and avoidance, which represent the fundamental behavioral responses to the threat of disease. The MCMQ has good internal consistency, with Cronbach’s α values as follows: confrontation, 0.74; avoidance, 0.73; and resignation, 0.83.²⁵ Cronbach’s alpha of the scale in this study was 0.738, 0.778, 0.801.

Statistical Analysis

SPSS 25.0 was used to calculate the different descriptive statistics for the general characteristics of participants. Correlations between each pair were analyzed using Pearson’s rank-order correlation coefficients. AMOS 24.0 were utilized for path analysis to assess the fitness of the hypothesized model, which incorporated four variables (social support, illness perception, coping strategies and FoP). Path analysis can simultaneously examine the direct and indirect effects of the variables and generate models. The maximum likelihood method was applied to estimate the parameters of the structural equation model. The model was modified according to the correction index. The model fit was assessed using a normed Chi-square (χ²/df: ≤ 3), root mean square error of approximation (RMSEA: ≤ 0.08), comparative fit index (CFI: ≥ 0.95), and Tucker-Lewis Index (TLI: ≥ 0.95), with these values indicating acceptable criteria.²⁶ Bias-corrected percentile Bootstrap method (5000 replicated samples) was used for mediation effect tests. All tests were two-tailed and differences were considered statistically significant at P < 0.05.

Results

Descriptive Characteristics of the Sample and Univariate Analysis

In this study, a total of 278 questionnaires were distributed. Of these, 5 questionnaires were deemed invalid. As shown in Table 1, this resulted in 273 valid questionnaires, yielding a response rate of 98.20%. The majority of the sample were in the 20 to 54 years age group, had a Junior college and university education (77.3%). Most participants were lived in city, among which 90.5% were employed, 2.6% were students, and 7.0% were unemployed. A majority of the participants (82.1%) presented at least two types of pain, and 76.2% reported a recurrence. Of the 273 participants, 27.1% did not have a marriage history, and 33.0% still had fertility intentions.

Table 1 Sociodemographic and Clinical Information (n = 273)

The results of the univariate analysis showed that there were significant differences in FoP of patients across fertility intentions, presence of chronic disease, disease recurrence, type of pain and disease duration. Detailed data are presented in Table 1.

Correlation Analysis of Social Support, Illness Perception, Coping Strategies and FoP

Pearson’s correlations among the study variables are reported in Table 2. The results indicated that FoP was negatively correlated with social support (r = −0.411, p < 0.001) and positively correlated with illness perception (r = 0.600, p < 0.001), confrontation (r = 0.223, p < 0.001), resignation (r = 0.532, p < 0.001) and avoidance (r = 0.334, p < 0.001). Social support was negatively correlated with illness perception (r = −0.343, p < 0.001), avoidance (r = −0.271, p < 0.001), and resignation (r = −0.366, p < 0.001). Illness perception was positively correlated with confrontation (r = 0.171, p < 0.001), resignation (r = 0.570, p < 0.001) and avoidance (r = 0.390, p < 0.001).

Table 2 Bivariate Correlations Among the Variables of Interest (n = 273)

Mediation Effect Test

To verify the effects of the three different coping strategies in the model, this study constructed three models, as shown in the Figure 2. For model A: χ² / df = 3.214, GFI = 0.945, NFI = 0.895, RFI = 0.829, IFI = 0.926, CFI = 0.924, TLI = 0.952, RMSEA = 0.090. This model fit failed to meet the academically recognized acceptable criteria. For model B: χ² / df = 2.615, GFI = 0.952, NFI = 0.925, RFI = 0.878, IFI = 0.953, CFI = 0.952, TLI = 0.921, RMSEA = 0.077. In this model, the resignation and FoP did not reach statistical significance. Therefore, the focused examination was conducted on the multiple mediating effects of illness perception and avoidance between social support and FoP. The index of the hypothetical path model C was overall satisfactory, meeting the recommended values: χ² / df = 1.897, GFI = 0.966, NFI = 0.943, RFI = 0.906, IFI = 0.972, CFI = 0.971, TLI = 0.953, RMSEA = 0.057. This model suggests that illness perception and avoidance play a chain-mediated role in social support and FoP. Table 3 presents the result of the chained mediation analysis. The 95% confidence intervals for the total, direct and indirect effects did not include zero, indicating that social has a significant impact on FoP, directly or indirectly. The standardized direct effect (−0.176) accounted for 32.00% of the total effect (−0.550), while the standardized indirect effect (−0.374) accounted for 68.00%, demonstrating that social support indirectly affects FoP in a dominant role. The mediating effect consisted of three pathways: (1) the effect of social support affecting FoP through illness perceptions (−0.268) accounted for 71.66% of the standardized indirect effect; (2) the effect of social support affecting FoP through avoidance (−0.054) accounted for 14.44% of total indirect effects; and (3) the chain effect of social support affecting FoP sequentially through illness perceptions and avoidance (−0.052) accounted for 13.90% of the indirect effect. In conclusion, the independent mediating effects of social support through illness perceptions and avoidance, respectively, and the chain mediating effects they form significantly affect FoP, consistent with the hypotheses of this study.

Table 3 Mediating Effects of Relationship Between Social Support and Fear of Progression

Figure 2 (A) The chain mediating effect of illness perception and confrontation. (B) The chain mediating effect of illness perception and resignation. (C) The chain mediating effect of illness perception and avoidance. ***p < 0.001.

Discussion

To the best of our knowledge, it is the first study to explore the factors influencing FoP in patients with endometriosis using the Common Sense Model of illness self-regulation. Our study attempts to find out the overall level of FoP and its influencing factors in women living with endometriosis. More specifically, it aims to elucidate the potential pathways through which social support, illness perception, coping strategies and FoP interact, contributing to carry out targeted prevention and screening for dysfunctional FoP.

Our results showed that the mean FoP of the sample of individuals with endometriosis were 30.95 points (standard deviations = 8.15), of which 38.10% had dysfunctional FoP. Although the group mean score has not reached the clinical cutoff for dysfunction, a considerable proportion of patients with endometriosis experience significant FoP, with large individual differences. This indicates that this issue cannot be overlooked in the endometriosis population. Clinically, high-risk patients with scores significantly above the mean should be identified and given priority for targeted interventions, while patients with scores close to the mean should receive routine psychological education and support, so as to achieve stratified care and precise intervention. However, the scores in this study were lower than those reported in Australia.¹⁰ One plausible explanation is the difference in study populations: all participants in Pickup’s study had endometriosis-associated pain, whereas this study included individuals without such pain. The difference in FoP scores attributed to this population variation is highly consistent with the core logic of the “pain-threat cognitive association” in the Cancer Threat Interpretation Model proposed by Heathcote.²⁷ Specifically, this model posits that when individuals have explicit disease-related pain experiences, pain is prone to being interpreted as a “threat signal of disease recurrence or progression”, which in turn triggers and reinforces the emotions and cognition associated with FoP. Additionally, our study found that patients with more complex and severe pain symptoms were more likely to report higher levels of FoP. Furthermore, the prolonged disease course and high recurrence rate cause patients to repeatedly experience pain, treatment burden, and impaired daily functioning, leading them to maintain hypervigilance toward bodily signals. Influenced by traditional culture, women undertake the family obligation of childbearing and generational inheritance.²⁸ However, endometriosis treatment often contradicts personal fertility needs, leaving younger women with fertility concerns caught in a lasting dilemma between treatment and pregnancy preparation.²⁹ Collectively, these factors accumulate into patients’ memories of disease uncertainty, elevate their overall threat perception of disease progression, and ultimately exacerbate the adverse psychological state of FoP.

The Direct Effect of Social Support on FoP

Our study emphasizes the crucial role of social support in influencing FoP among endometriosis patients, which is consistent with the findings of Li Yang.³⁰ Social support, as an external resource that individuals can rely on in the process of adapting to and coping with various stressors, can alleviate the self-burden of patients facing long-term disease challenges, thereby reducing their FoP.^31,32 Patients with higher levels of social support are more likely to receive emotional care and appropriate guidance from family or society. Such multi-dimensional support can effectively buffer the negative stress effects caused by the disease, strengthen patients’ confidence and subjective initiative in fighting the disease, and thus alleviate their excessive worry about disease progression.³³ Therefore, healthcare providers should strengthen care for patients with endometriosis, assist them in establishing effective family and social support networks, and promote online emotional support platforms to provide positive guidance among patients.³⁴ Meanwhile, partner involvement should be incorporated into health education and psychological support programs to enhance the buffering effect of the family support system and improve patients’ sense of belonging and perceived support.

It is worth noting that, in the Chinese cultural context, social support is rooted in a family-centered collectivist value system. While family involvement can effectively buffer disease stress and improve patient adherence, influenced by cultural norms of emotional restraint, excessive protectiveness from family members often implicitly forms social constraints. Such restrictions on emotional expression may further intensify patients’ uncertainty toward their illness, ultimately potentially exacerbating FoP.^35,36 In contrast, Western contexts place greater emphasis on autonomy and open communication, which facilitate individuals’ disclosure of fearful emotions; however, the relatively dispersed sources of social support and lower levels of family involvement also limit the scope of substantive care that families can provide.³⁷ Therefore, future cross-cultural studies are warranted to clarify how cultural norms moderate the pathways between social support and FoP, as well as to evaluate the transferability of intervention models across different cultural settings.

The Mediating Role of Illness Perception

Additionally, this study confirms that illness perception plays a mediating role between social support and FoP in patients with endometriosis, and the proportion of this mediating effect in the total effect is significantly higher than that of other potential mediating pathways, which is consistent with the previous study.^38,39 Illness perception is emotional and cognitive representations of health threats, and reflect patients’ own beliefs about their illness.⁴⁰ Patients with endometriosis who hold negative illness perceptions may misinterpret assisted reproductive treatment responses and pelvic pain symptoms as signs of disease progression, treatment failure, or further impairment of fertility. These cognitive biases increase vigilance and anxiety levels, thereby exacerbating emotional distress and FoP.⁴¹ Sufficient social support provides individuals with additional information resources, helping them accurately understand the disease and treatment outcomes, thus forming positive perceptions of their own illness.³⁴ Interventions targeting negative illness perceptions may help reduce patients’ FoP and improve mental health. In the early diagnostic phase, patients can be guided to use tools such as symptom diaries to record the frequency, intensity, and associated factors of pain episodes, enabling them to objectively identify symptoms and common controllable triggers.⁴² During long-term management, mhealth applications can be used to deliver personalized disease management and fertility counseling to patients precisely, including the expected efficacy and potential side effects of different regimens, so as to promote the formation of comprehensive and accurate illness perceptions and thereby alleviate fear.⁴³

The Mediating Role of Medical Coping

Moreover, this study reveals that avoidant coping serves as a partial mediator between social support and FoP. Insufficient social support is associated with more frequent use of avoidant coping strategies among patients with endometriosis, consistent with the previous research finding.⁴⁴ In the absence of adequate social support, they tend to exhibit behaviors such as avoiding medical treatment and social interactions.⁴⁵ This finding can be interpreted using the Transactional Model of Stress and Coping.⁴⁶ When patients appraise endometriosis as a “threat” that exceeds their personal resources, and perceive a lack of effective problem-solving skills or social support, they tend to adopt emotion-focused, maladaptive coping strategies, such as avoidance. While such coping strategies reduce psychological stress in the short term, they lead to reduced active disease management and resource acquisition by patients over the long term. Amid negative experiences such as treatment ineffectiveness and fertility-related distress, patients gradually lose confidence in their ability to control the disease, ultimately resulting in the persistence and exacerbation of psychological distress and the formation of a vicious cycle.⁴⁷ Existing evidence suggests that e-health interventions can effectively encourage patients with avoidant coping to actively participate in psychological interventions targeting fear of recurrence.⁴⁸ Therefore, healthcare providers should pay attention to the coping strategies of patients with endometriosis, promptly identify those adopting negative coping strategies such as avoidance, and carry out targeted psychological interventions and health guidance.

However, the mediating effects of confrontive coping and resigned coping were not significant. This finding can be interpreted in light of the nature of the measured constructs and the cultural context. First, confrontive coping encompasses both problem-focused proactive behaviors and hypervigilant symptom monitoring. In the context of endometriosis, these two dimensions of approach coping may exert opposing effects on FoP. Proactive coping strategies, represented by mindfulness practice, have been shown to significantly enhance the self-regulatory capacity of endometriosis patients.⁴⁹ At the core of this process is the patient’s re-establishment of voluntary control over their cognitive and physiological responses, thereby effectively reducing the psychological burden induced by the disease. This alleviation of psychological burden may further reduce FoP by enhancing treatment confidence. Conversely, excessive self-symptom monitoring is prone to catastrophizing cognition about pain signals. Stragapede et al⁵⁰ provided empirical evidence for this: patients’ rumination about pain and hypervigilance significantly exacerbate their negative emotional experiences and may thereby trigger FoP. Second, within the Chinese cultural context, the expression of social support is often embedded in a framework of family responsibilities, implicit expectations, and interpersonal evaluation systems.⁵¹ Care from family members to patients is often manifested as “urging active treatment” or “promoting childbirth”. Although such support is well-intentioned, the underlying messages carry pressure, criticism, or high expectations regarding the patient’s ability to manage the disease. When patients receive such social support, their reduction in resigned coping is often not driven by intrinsic proactive motivation, but rather by a desire to meet external expectations or avoid disappointing family members.⁴⁵ This coping strategy, fueled by external pressure, may weaken its buffering effect on FoP.

The Serial Multiple Mediation Model

Illness perception and avoidant coping play a chain mediating role between social support and FoP, which is consistent with theoretical frameworks and previous research.^11,52 According to the COR theory proposed by Hobfoll,⁵³ social and individual resources are crucial in shaping patients’ perceptions of disease. A lack of social support may exacerbate maladaptive cognition related to endometriosis and overestimate the severity of subjective symptoms including pain and fatigue.⁵⁴ According to the fear-avoidance model,⁵⁵ individuals who develop ambiguous and negative threat perceptions of their illness are likely to experience anxiety and initiate avoidance tendencies, which then consolidate into persistent avoidance behaviors. There is high uncertainty about whether ovarian function can recover after treatment, and whether future pregnancy can be achieved naturally or through assisted reproductive technology. Such unpredictability can also lead to repeated rumination in patients, thereby causing them to avoid fertility-related decisions.⁵⁶ Therefore, healthcare providers should attach great importance to the multidimensional nature of social support, create a social environment that facilitates emotional expression and idea exchange for patients in accordance with their needs, and deliver targeted support. In addition, clinical interventions should take cognitive reconstruction to help replace the negative stereotype of endometriosis, strengthen their understanding and perceived control over the disease, and encourage active participation in disease management, with the goal of facilitating adaptive changes in coping strategies. Such an approach is anticipated to restore normal psychological function among patients experiencing FoP.

Limitations

There were several limitations in our study. Firstly, although we employed structural equation analysis to identify the conceptual model affecting FoP, the analysis of only baseline data prevents inferences of causality among these factors. Future research is recommended to integrate longitudinal study designs with multi-timepoint data collection, thereby enabling a deeper exploration of causal relationships. Secondly, psychological data were collected through self-reported questionnaires, which may introduce response and recall biases. Thirdly, the generalizability of the study’s findings may be constrained by the reliance on a single medical center in China for sample recruitment. Subsequent studies may expand the participant pool and validate the current findings in populations across different geographic regions. Finally, investigating whether additional personal characteristics and specific clinical factors, such as disease severity and comorbidities, may act as moderators of the observed effects, which could provide a promising avenue for future research.

Conclusion

This study explores the overall FoP levels in patients with endometriosis, as well as the mechanisms and pathways between social support, illness perception, coping strategies, and FoP. The results indicate that social support has a direct impact on the FoP levels of patients with endometriosis. Additionally, the relationship between social support and FoP is mediated by illness perception and avoidant coping. Healthcare providers could evaluate key psychological and social determinants, including social support, illness perceptions, and maladaptive coping strategies. Corresponding interventions should include establishing online support platforms, partner education, cognitive restructuring, and enhanced training in adaptive coping skills. Such interventions may alleviate FoP and promote more effective disease self-management among patients with endometriosis. In the future, multi-center, large-sample longitudinal follow-up studies can be conducted to further analyze the long-term effects of FoP in patients with endometriosis. Targeted strategies can be adopted to address these psychosocial factors, and individualized intervention programs suitable for endometriosis patients can be developed to alleviate their FoP and improve in mental health and quality of life.