Patient Perspectives on Reproductive Health in Systemic Lupus Erythematosus: Exploring Disease Manifestations, Quality of Life, and the Role of Social Support

Introduction

Systemic lupus erythematosus (SLE) is an autoimmune relapsing-remitting multisystem disease primarily affecting women of childbearing age.¹ Its manifestations are a result of interactions between environmental, immune and genetic factors, resulting in autoantibodies that cause a spectrum of organ damage.² The disease has a range of clinical manifestations with varying severity that commonly involves the cutaneous, pulmonary, cardiovascular, renal and hematological organ systems.³ The global incidence of SLE is 5.14 (1.4 to 15.13) per 100,000 person-years, with a worldwide prevalence of 43.7 (15.87 to 108.92) per 100,000 persons.⁴ In the Arab world, prevalence ranges between 19 and 103 per 100,000.^5,6 While no studies have specifically investigated the prevalence of SLE in Jordan, an observational study by Adwan et al reported data on 275 SLE patients seen at two tertiary centers over two years.⁷ SLE has a substantial burden on patients, as the long-term and unpredictable course of SLE disrupts many aspects of daily life, including patients’ ability to perform their normal daily activities properly, leading to direct and indirect financial losses and decreasing the overall quality of life. The health-related quality of life of SLE patients has been consistently reported to be lower than the general population.^8,9

Given its disproportionate impact on women of childbearing age, SLE poses unique challenges to reproductive health. The challenges facing women with SLE begin prior to conception, where SLE affects both fecundity and fertility.¹⁰ The rates of secondary infertility are higher among women with SLE due to factors such as irregular menses caused by disease flares and reduced fertility related to renal disease.⁸ Additionally, cytotoxic drugs used to treat SLE, such as cyclophosphamide, decrease the ovarian reserve and may cause premature ovarian failure.¹¹ In the case of a successful conception, an increasing rate of adverse pregnancy outcomes poses a challenge to both patients and physicians. SLE results in increasing complications for the mother due to a higher risk and frequency of preeclampsia, hypothyroidism, infections and strokes. Moreover, it also has adverse fetal outcomes, resulting in higher levels of intrauterine growth restriction, preterm births and mortality.¹² The outcomes and complications of the pregnancy can be predicted by the level of disease.¹³ According to Mobini et al, inadequate contraception and family planning for women with SLE can potentially increase the rates of pregnancy complications.¹⁴ All these factors make family planning an essential component of the care that should be offered to women with SLE.

Limited research exists on patients’ perspectives regarding fertility and pregnancy outcomes among individuals with SLE in the Arab world. This study aims to address this gap by exploring pregnancy outcomes and patients’ views and attitudes on reproductive health topics, focusing on the relationship between disease manifestations, quality of life, and the influence of social support. A deeper understanding of patient-reported experiences is critical to designing culturally appropriate interventions, yet remains underexplored in Arab populations.

Methods

Study Design

This study is an observational cross-sectional study that enrolled all sequential female patients with SLE who attended a single-provider rheumatology clinic at Jordan University Hospital, a tertiary care teaching hospital in Amman, the capital of Jordan, between September 2023 and December 2024. This study was approved by the ethics committee of the University of Jordan Hospital (10/2023/30525), and all participants signed an informed consent form before participating in the study. The study protocol was in concordance with the Consensus-based Standards for the selection of health status Measurement Instruments (COSMIN) checklist,¹⁵ and complied with published guidelines.¹⁶

Inclusions and Exclusions Criteria

The study enrolled all consecutive female patients aged 18 years or older who met the 2019 EULAR/ACR Classification Criteria for SLE.¹⁷ Enrollment concluded after six months when no new patients presented for clinic visits. Patients were excluded if they were younger than 18 years or declined participation, often due to time constraints, as completing the questionnaire required an additional 30 minutes following their routine clinic visit.

Demographic and Clinical Data Collection

A structured questionnaire was designed and used to collect patients’ demographic and clinical data, including sociodemographic profile, educational status, occupation, duration of the disease, presence of any systemic illness or comorbid conditions, history of any drug intake, smoking, past medical history, and past surgical history. In addition, reproductive health data, including age at menarche, period regularity and obstetric history, including the number of pregnancies with their outcomes and complications. The electronic medical records were used to collect patients’ medications and antibody profiles.

Measurement of SLE Disease Activity, Quality of Life and Perceived Social Support

SLE disease activity was measured using the Systemic Lupus Erythematosus Disease Activity Index SLEDAI.¹⁸ The World Health Organization Quality of Life instrument (WHOQOL) and the Multidimensional Scale of Perceived Social Supports (MSPSS) were used to assess patients’ quality of life and perceived social support, respectively. WHOQOL assesses patients’ perceptions of their quality of life across physical, psychological, social, and environmental domains, allowing the practitioners to understand the holistic impact of diseases or treatments on patient well-being.¹⁹ MSPSS provides insights into a patient’s perception of social support, which can be pivotal in understanding recovery dynamics, especially in chronic diseases or post-surgical scenarios.²⁰

Statistical Analysis

The data analysis was performed using IBM-SPSS v27. Demographic data, laboratory values, organ involvement, WHOQOL-BREF, MSPSS, and SLESAI scores were reported as counts and percentages or means and standard deviation. The association between variables and patients’ perception of the effect of SLE on reproductive health was tested using Chi-square, Fischer-Exact test or T-test as appropriate.

Results

Demographics of the Participants

A total of 66 females with SLE participated in this study. The mean age was 39.6 ±15.4. Regarding educational level, 50% of participants (N=33) had school-level education, 48.5% of participants (N=32) had college-level education, and only 1.5% of participants (N=1) were illiterate. In terms of employment, 51.5% were employed, of whom 22.7% (N=15) had white-collar jobs. Only two patients (3.0%) smoked cigarettes, and nine patients (13.6%) smoked Hookah. The most common comorbidity was osteoporosis, present in 27.3% of participants, followed by Diabetes mellitus (DM) and thyroid disease, each present in 12.1% of participants (N=8). Most patients (84.4%, N=54) used calcium and vitamin D supplements (Table 1).

Table 1 Demographics and Baseline Characteristics of the Patients

Clinical Manifestations of SLE

The manifestations of SLE varied among the patients: 84.8% (N=56) reported constitutional symptoms, 83.3% (N=55) had mucocutaneous involvement, and an identical proportion (83.3%, N=55) experienced musculoskeletal manifestations. However, these did not necessarily occur in the same individuals. Additionally, vascular involvement was observed in 50% of patients, and 36.4% of patients (N=24) had renal involvement (Figure 1). Sixteen patients (25.8%) had a family history of SLE. The mean SLEDAI score of patients was 7.95± 9.29.

Figure 1 SLE manifestations among the study sample.

Regarding the antibodies profile, the majority of patients were positive for cardiolipin IgG (51.6%, N=33). On the other hand, only thirteen patients (20.3%) and twenty-six patients (40.6%) were positive for SS-A and DS-DNA antibodies, respectively.

Hydroxychloroquine was used by fifty-two patients (81.3%), which was the most prescribed drug in our study population, followed by corticosteroids, which was used by forty-seven patients (73.4%) (Table 2).

Table 2 Disease Features and Quality of Life Measures in Systemic Lupus Erythematosus Patients

Reproductive History of the Participants

Of the participants, thirty-nine (59.1%) were married, twenty-four (36.4%) were single, and three (5.0%) were divorced. Thirty-five patients (53.0%) had 1 or more children. The mean number of gravity was 5.05 ±2.62 times, and parity was 3.63 ±1.83 children. Regarding delivery methods, eighteen patients had only vaginal deliveries (27.2%), six patients had only cesarean deliveries (9.1%), and eleven patients had both (16.7%). Most patients were not using contraceptive methods (22.7%, N=15). However, among patients who were using contraceptive methods, IUDs were the most used (10.7%, N=7).

Among patients who were married before, thirty-five patients (83.3%) had at least one pregnancy-related complication. During their pregnancies, 66.7% of patients (N=28) reported maternal-related pregnancy complications, and 76.2% of patients (N=32) reported fetal-related pregnancy complications. Miscarriage occurred at least once in twenty-four patients (57.1%). Pregnancy complications were reported in 47.6% of first pregnancies, 50.0% of second pregnancies, and 54.8% of subsequent pregnancies. Table 3 describes patients’ reproductive health and pregnancy-related complications.

Table 3 Reproductive Health of Data of The Patients

Quality of Life and Perceived Social Support Measures Among the Participants

Patients’ perceived social support was assessed using MSPSS; the mean score of participants was 67.27 ±12.3. When patients’ perceived social support was categorized according to MSPSS, Four patients (6.1%) were in the low category, twenty-five (37.9%) were in the moderate, and thirty-seven (56.1%) were in the high category. Regarding the quality of life as measured by the WHOQOL-BREF, the mean scores in the physical health domain were 15.15 ±21.8, in the psychological health domain 40.34 ±22.66, in the environmental health domain 30.08 ±5.90 and in the social health domain 72.35 ±22.32 (Table 2).

Patients’ Perspectives on Reproductive Health and Associated Influencing Factors

Forty-five patients (69.2%) were unsure whether SLE affects fertility, twelve patients (18.5%) thought it does not alter fertility, and eight patients believed SLE decreases fertility. Only six patients (9.0%) had previously received counseling on reproductive health and family planning from their obstetrics and gynecology doctor, while thirty patients (45.5%) had not been counseled. Patients were asked about their preferences for reproductive health counseling; regarding the timing of these consultations, 10.6% (N=7) preferred to receive counseling immediately after their SLE diagnosis, 7.6% (N=5) preferred to be consulted once their disease was under control, and 4.5% (N=3) were not interested in receiving such consultations. Regarding preferences for the consultation setting and the presence of others, 12.2% of patients (N=8) preferred to be consulted alone. Only four participants (6.1%) expressed a preference for having someone else present, such as their husband (4.5%, N=3) or mother (1.5%, N=1). Additionally, 18.2% of patients (N=12) indicated a preference for being consulted by a rheumatologist (Table 4).

Table 4 Patients’ Perspectives on Reproductive Health and Counseling in SLE

Patients were asked if a previous pregnancy outcome influenced their decision not to have children. Only 3.2% of patients (N=2) agreed, while 58.1% (N=36) reported that their previous pregnancy outcome did not impact their decision (Table 4).

Influence of Perceived Social Support and Quality of Life on Patients’ Perceptions of Reproductive Health in SLE

Regarding patients’ perception of how SLE affects fertility, patients who think SLE decreases fertility had significantly lower WHOQOL-BREF social health scores (55.21 ±28.15) compared to patients who were unsure (71.85 ±22.07) and those who believe it does not negatively impact fertility (86.11 ±8.21) (P-value =0.008). Similarly, patients who think SLE decreases fertility had lower MSPSS scores (59.25 ±13.75) compared to patients who were unsure (66.84 ±12.78) and who think it does not affect fertility (73.08 ±6.88) (P-value =0.049). On the other hand, neither the age, age at the onset of SLE, age at menarche or menopause were significantly associated with patients’ perceptions of reproductive health (Table 5). None of the medications were associated with patients on patients’ perspectives on reproductive health.

Table 5 Differences in Demographics, Clinical Manifestations, Disease Activity, Quality of Life, and Social Support Based on Patients’ Perceptions of SLE’s Impact on Reproductive Health

Patients who were consulted by their Obstetrics and Gynecology doctor had significantly higher WHOQOL-BREF physical health scores (32.1 vs 10.3) (P-value =0.036) and higher psychological health scores (63.2 vs 35.1) (P-value =0.012). In addition, patients who preferred to be consulted by physicians had higher scores in the physical health domain compared to patients who were not interested in receiving such consultation (24.7 vs 5.4) (P-value =0.48). MSPSS scores were not significantly different between patients who received a prior reproductive health consultation compared to those who did not (67.5 vs 63.2) and between patients who prefer to be consulted by a doctor compared to patients who are not interested in consultation (65.7 vs 69.8).

Discussion

This cross-sectional study explores the demographics and organ manifestations of Jordanian females diagnosed with SLE while also examining social support, quality of life, and patients’ perspectives on reproductive health and their experience and knowledge regarding the effects of SLE on their fertility and pregnancy outcomes.

Our findings showed that 98.5% of study participants had at least school-level education, which reflects the very high literacy rates in Jordan.²¹ SLE patients are known to face a substantial burden of decreased productivity.²² This observation was evident in our study, where none of the patients were in demanding jobs, and 60.1% of patients were either unemployed or retired. Similar to the marriage rates in Jordan,²³ 59.1% of study participants were married. Even though these numbers mean that SLE does not affect the likelihood of getting married due to its latter presentation among the Jordanian population,⁷ It does not reflect the marital satisfaction of these patients compared to individuals without the disease. Smoking cessation should be considered a cornerstone in SLE treatment because of its effects on the disease activity and treatment response.²⁴ Among our study participants, 16.6% of patients were smokers, 3% were cigarette smokers, and 13.6% were Hooka smokers.

Even though the prevalence of joint involvement (83.3%), renal involvement (36.4%) and constitutional symptoms (84%) in our study were consistent with previous reports from Jordan,⁷ the prevalence of neuropsychiatric (27.3%) and pulmonary involvement (25.8%) were considerably higher compared to the same study⁷ and other reports in the world.²⁵ The higher rate of organ involvement observed in our study was reflected in the SLEDAI score in our sample (7.95 ±9.29), which, when compared to other studies, is considerably elevated.^26,27 Due to the underlying etiology of the disease and the effects of certain medications, especially steroids, patients with SLE are at an increased risk of developing osteoporosis.²⁸ In our study, 27.3% of participants were diagnosed with osteoporosis, making it the most common comorbidity observed among our study population. Compared to the normal population in the Middle East and other areas of the world, the average WHOQOL-BREF scores in our study were lower in the physical health domain (15.5 ±21.8), psychological health (40.3 ±22.7) and environmental health (30.1 ±22.3) while the social health scores where comparable to other studies (72.4 ±22.3).^29,30 The elevated social health scores can be attributed to the fact that patients with chronic illness need stronger social networks, which can make coping with the disease easier.³¹ Low physical and psychological health scores demonstrate the effect of SLE on daily functioning and psychological well-being, highlighting the need for mental and physical recreational health services for patients.

It is well-established that SLE is associated with worse pregnancy-related outcomes.^32,33 However, the SLE patients included in our study had an average of 3.63 ± 1.83 children per woman, which is higher than previous reports^32,33 and above the national average for Jordan. This discrepancy may be explained by the fact that a significant proportion of these patients were diagnosed after completing their families or reaching the end of their childbearing years. SLE is highly associated with fetal loss, where almost one out of five pregnancies end with miscarriage.³⁴ Among the 42 patients who had been married previously, 24 patients (57.1%) had experienced at least one miscarriage. The rate of Cesarean section among SLE patients varies between 40–60%.^35,36 In our study, among the 35 patients who experienced pregnancies complicated by SLE, 17 (48.6%) had at least one cesarean section, which is comparable to the studies mentioned earlier.

Low levels of knowledge regarding the effects of SLE on reproductive health and fertility were observed in our study population. Only 8% of patients thought that SLE decreases fertility, whereas the rest thought it either does not change it (18.5%) or did not know whether SLE affects their fertility or not (69.2%). A greater proportion of women in Blomjous et al’s study in the Netherlands believed that SLE decreases fertility³⁷ compared to our sample despite the higher educational level of our sample. This divergent observation may be attributed to the fact that our patients were younger and had less experience with the disease compared to Blomjous et al’s study population and a potential denial observed in our patients -even though it was not assessed directly- which may reduce their perception of the disease’s impact on their reproductive health.³⁸ Among the 22 married patients of reproductive age who are planning to have more children, 36.4% were unwilling to discuss their reproductive health and fertility with their physicians. This observation highlights the possibility that some patients may be in denial about the impact of the disease on their reproductive health. Strong family connections and support are usually the norm among the Jordanian community.³⁹ However, our findings contrast with this pattern, as only four patients expressed a preference for discussing their SLE in the presence of a family member, which may stem from concerns about judgment or embarrassment, as well as the possibility that having companions present could compromise patients’ autonomy and privacy when addressing sensitive topics.⁴⁰ While our study was not designed to explore the underlying motivations for this preference, prior regional research has highlighted the role of chronic illness stigma.⁴¹ Another explanation of the low level of knowledge regarding how SLE affects fertility is the fact that only 9% of our study participants were consulted before by their OBGYN regarding the effect of their disease on fertility.

A high proportion of patients had high perceived social support (56.1%) and moderate perceived social support (37.9%). Our findings of high perceived social support among our population of SLE are higher than other studies in different populations in different areas of the world.^42,43 Patients who believed that SLE does not change fertility and those who did not know had higher MSPSS scores and higher social-health scores using WHOQOL-BREF compared with patients who thought it decreased fertility, an observation that may be attributed to the fact that infertile women are often stigmatized by their communities and families^44,45 leading to decreased social support for patients whose families are aware of their infertility or higher risk of infertility. Patients who prefer to be consulted by physicians had higher physical health scores compared to patients who are not interested in consultation (24.7 vs 5.4). This may be attributed to the fact that patients, due to their unfavorable disease outcomes and poor physical health, believe that seeking a doctor’s help will not change the course of their condition.⁴⁶

The advantages of this study include its being the first in the region to describe the perception of SLE patients toward how the disease affects their reproductive health and their attitudes toward it. It is also considered the first study in Jordan to utilize quality of life and social support measures in assessing patients with SLE. Another advantage of this study is it was conducted in a tertiary hospital in the capital of Jordan, Amman, to which patients from across the country are referred.

Our study has some limitations. The cross-sectional study design used in this study does not allow dynamic monitoring of how patients’ perspectives, attitudes, quality of life and social support change with time. Also, the relatively small sample size in our study is considered a limitation, which can lead to missed significant associations between variables.

Conclusions

Despite the high levels of education, a lack of knowledge about the effects of SLE on reproductive health was noted, with a significant portion of patients unwilling to discuss fertility issues with their doctors. A need for targeted educational interventions tailored for SLE patients to enhance patients’ understanding of their disease, particularly its impact on fertility and pregnancy outcomes, is of paramount importance. Additionally, a need for collaboration among OBGYNs and Rheumatologists to create a culturally sensitive method to address common misconceptions about SLE and infertility is needed. Future research with a larger sample size and longitudinal design is recommended to investigate further the perception and attitudes of SLE females regarding how the disease affects their fertility.