The World Health Organization (WHO) promotes a holistic approach to maternity care, emphasizing the individuality of each pregnancy (1). Although pregnancy and childbirth have been widely researched, evidence suggests a continued need for further investigation into women's reproductive and maternal health (2), especially since Sjögren's disease has been associated with increased risks of spontaneous abortion, preterm birth, low birth weight, and congenital anomalies in infants (3).

Primary Sjögren's disease is a chronic systemic autoimmune rheumatic disease marked by lymphoplasmacytic infiltration of the salivary and lacrimal glands, leading to sicca symptoms and/or systemic manifestations, often accompanied by a distinct autoantibody profile. It is the second most common connective tissue disease after rheumatoid arthritis, affecting 0.3%–3% of the population, with a strong female predominance (9:1 sex ratio) (4). Individuals with Sjögren's disease often experience fatigue and joint pain, with fatigue frequently emerging as a major and persistent concern (4). Both symptoms significantly impair patients' health-related quality of life (HRQoL) (4–6). Nevertheless, research shows that the consequences of Sjögren's disease vary among individuals, and the subjective experience of symptoms in daily life differs significantly (5).

Even though Sjögren's disease has been associated with adverse pregnancy outcomes (3), increased public awareness and improvements in early diagnosis and treatment of Sjögren's syndrome have contributed to a higher prevalence of pregnant women with Sjögren's disease (3, 7). Previous research on pregnancy and Sjögren's disease has primarily focused on adverse fetal and maternal outcomes, including low birth weight, preeclampsia, higher rates of stillbirth and abortion, and preterm delivery (3, 8). However, a recent study suggests that pregnancies in women with Sjögren's disease are no longer universally classified as high-risk. This shift is largely attributed to improved monitoring and care, despite the continued elevated risk of adverse fetal outcomes, such as congenital heart block in women who test positive for anti-SSA or anti-SSB antibodies (9). These patients are monitored more closely, with fetal heart assessments conducted between gestational weeks 16 and 24, supplemented by additional ultrasounds when necessary.

A different study (10) investigating the experiences and unmet needs of patients regarding pregnancy and family planning revealed that individuals with rare rheumatic diseases, such as Sjögren's disease, express a preference for a more holistic approach from healthcare providers, including gynecologists, midwives, and obstetricians. These patients favor care that places less emphasis on disease activity and more on overall well-being (10). Nevertheless, comprehensive preconception counselling and prenatal screening remain critical, as early identification of fetal abnormalities and strategic planning concerning the timing and method of delivery are essential for optimizing maternal and neonatal outcomes (3). In light of these considerations, the present study aims to explore changes in HRQoL and selected disease-specific parameters throughout pregnancy in Norwegian women diagnosed with Sjögren's disease.

This study aimed to explore HRQoL in Norwegian women with Sjögren's disease throughout pregnancy to detect areas where women with Sjögren's disease could need more guidance from midwives and health care personnel providing antenatal care. In general, the analysis showed limited variations in HRQoL and disease-related measures during pregnancy, indicating that the pregnant women with Sjögren's disease in this study experienced little pain and perceive overall good health.

The findings in this study are in contrasts with previous research on HRQoL in individuals with Sjögren's disease (4, 5, 19, 20) stating that Sjögren's disease has a high impact on social and physical dimensions of patients' HRQoL. Previous research has also stated that people with Sjögren's disease experience challenges related to social and emotional dimensions (19, 20). In this study, the pregnant women with Sjögren's disease had lower scores for the RAND12 dimensions vitality, entailing limitations relating to energy and tiredness, the role-physical dimension, encompassing limitations in daily activities involving social and work-related situations, and general health, which is known to reflect on the individual's psychological wellbeing (21). Moreover, the RAND-12 dimensions of role-emotional and social functioning remain consistently high and stable within this study sample, reflecting limited interference of depressive and anxious symptoms with daily activities, as well as minimal disruption of social engagement due to emotional or physical health issues. The consistently high HRQoL scores observed in this cohort, despite Sjögren's disease being associated with substantial disease burden in previous studies (19, 20), may reflect several protective factors. Most participants were in remission during pregnancy, which likely minimized symptom severity and reduced the impact of disease activity on daily functioning (9, 22). Also, the majority had received comprehensive preconception counselling and planned their pregnancies, enabling optimization of health status before conception and adherence to preventive strategies such as medication management and monitoring (22, 23). Additionally, most had completed higher education (college/university), a factor known to positively correlate with the adoption of healthy lifestyle behaviors and the capacity to engage with health-related information and preventive care strategies (24). This educational background may have facilitated access to and comprehension of preconception counselling, as shown by the participants' adherence to recommendations such as pregnancy planning and achieving disease remission prior to conception (8, 22). Furthermore, higher educational background may have enhanced their ability to seek and utilize preventive measures during pregnancy, thereby contributing to safer and healthier pregnancy outcomes (22, 24).

Moreover, the physiological changes of pregnancy may exert a modifying effect on autoimmune disease activity, as suggested by improvements reported in other rheumatic conditions during gestation (23). In addition, Norway's healthcare system, characterized by structured antenatal care and access to multidisciplinary support, has likely contributed to enhanced maternal well-being. Taken together, these factors provide a plausible explanation for the consistently high and stable HRQoL observed in this cohort, contrasting with previous literature that highlights significant physical and psychosocial impairment among individuals with Sjögren's disease (4, 6, 19, 20).

The VAS-pain and bodily pain scores show that this study sample reports low amounts of pain during pregnancy, which is contrary to research portraying pain as one of the primary clinical manifestations for people with Sjögren's disease (4, 6, 19). Interestingly, symptoms of other rheumatologic diseases, such as RA, have been seen to spontaneously improve during pregnancy (23), and previous research has implicated symptom overlap between Sjögren's disease and RA (4). On the other hand, Sjögren's disease also present with similar symptoms as those commonly found in people with systemic lupus erythematosus (SLE) (4). However, this study did not take into account variables related to disease activity scores such as anti-SSA and anti- SSB levels, which are known factors to influence adverse maternal and fetal outcomes as well as disease exacerbations in people with Sjögren's disease (3, 8). This study focused exclusively on HRQoL, perceived disease burden, pain, and fatigue in pregnant women with Sjögren's disease. The findings indicate that levels of pain, fatigue, and overall perceived disease burden remained relatively stable throughout the course of pregnancy in this study population. However, fatigue was relatively high in the first trimester but decreased in the second trimester. Yet statistically significant differences were only seen when comparing the first and second trimesters. Our findings of relatively high VAS-fatigue scores and low scores in the vitality domain of HRQoL, indicate that fatigue is a symptom of great significance and align with previous research that fatigue is a major problem for patients with Sjögren's disease (4, 5, 20, 25, 26). The elevated VAS fatigue scores observed in the first trimester are not unexpected, given that fatigue and tiredness are common and impactful symptoms even among healthy pregnant women (27). This suggests that the reported fatigue may, at least in part, reflect normal physiological changes associated with pregnancy rather than disease-specific manifestations.

The majority of participants in this study remained in full- or part-time employment until the third trimester, which contrasts with findings from previous research (19) indicating lower rates of paid employment among individuals with Sjögren's disease. On the other hand, role-physical, a domain related to limitations in various roles, such as daily activities and work (21), had the lowest overall score in the study. A large Norwegian longitudinal study also found fatigue/tiredness to be one of the main factors influencing the rate of sick leave in pregnant women (28). It is therefore noteworthy that the women in this study continued working with relatively low rates of sick leave, particularly during the first trimester, despite reporting high levels of fatigue on the VAS and low scores on vitality and role-physical domains. These findings diverge from those reported by Dørheim et al. (28), who observed greater functional impairment in similar populations. Thus, the rate of sick leave among pregnant women has increased in recent years (29). In this study, a similar trend was observed, with a growing proportion of participants not engaged in paid employment as pregnancy progressed toward the third trimester. However, elevated sick leave rates are also common in the general pregnant population (28), suggesting that pregnancy itself may be a contributing factor to work withdrawal, independent of underlying disease.

This study also shows that this cohort of women with Sjögren's disease report relatively high HRQoL for most RAND-12 domains and have few disease complaints during pregnancy. The women were physically active in the first trimester, as advised in guidelines for pregnant women with connective tissue diseases (22). A decline in the RAND-12 physical functioning domain was reported toward the third trimester, suggesting that physical functioning may warrant greater attention in antenatal care for women with Sjögren's disease. This finding aligns with previous research indicating that impaired physical functioning significantly contributes to reduced HRQoL in individuals with Sjögren's disease (19). Moreover, this study found higher rates of exercise in the first trimester, confirming findings from another study indicating that the level of exercise is prone to decrease when women become pregnant (30). The elevated fatigue scores in the first trimester and the decline in physical functioning and exercise levels toward the third trimester found in this study mirror patterns reported in healthy pregnant populations (28, 31, 32) where physiological changes due to pregnancy may contribute to tiredness and decreased activity. Similarly, the reduction in physical activity during late pregnancy aligns with research showing that exercise levels typically decrease as pregnancy progresses in the general population (31). These parallels suggest that some symptoms traditionally attributed to Sjögren's disease during pregnancy (8) may, in fact, reflect normal gestational changes (33) rather than disease-specific manifestations (34). However, the consistently high HRQoL scores and low pain levels observed in this cohort contrast with previous literature on Sjögren's disease outside pregnancy, which reports significant negative impacts on physical and social functioning (7). The declining frequency of exercise after the first trimester could be a focus area for antenatal care since physical activity is considered especially important for women with connective tissue diseases (22). Exercise is shown to be beneficial for managing fatigue and pain for women with Sjögren's disease (4) and may improve patients' HRQoL (6, 35).

Previous studies have found it difficult to conclude on adverse maternal and fetal outcomes for women with Sjögren's disease due to difficulties in dealing with confounding factors such as BMI, age and comorbidities (3, 34). In this study, the rate of overweight was lower (14.7%) than in the general Norwegian pregnant population (22%) (36). The majority were also considered to be normal weight at the beginning of pregnancy, as recommended by the Norwegian Institute of Public Health (FHI) (29). The mean age of the study population was slightly higher (31.8 ± 4.5 years) when compared to the general pregnant population (31.4 years) for all births in Norway (29), but the majority were not considered to be of advanced maternal age (37). Although the majority of participants did not have registered comorbidities, the proportion with documented comorbidity (32%) was notably higher than that reported in the general pregnant population in Norway (15.3%) (38). It is therefore unexpected that these women demonstrated high scores across most RAND-12 domains and exhibited limited variation in HRQoL, given that recent literature has identified comorbidities as significant contributors to diminished quality of life (39).

In this study, 86.7% of participants carried out their pregnancies full term, with only 1.3% resulting in stillbirth or abortion. These outcomes contrast with previous research, which has reported higher rates of adverse fetal outcomes, including preterm birth, stillbirth, and reduced live birth rates among women with Sjögren's disease (3, 4, 8, 34, 40). Additionally, the observed rate of preeclampsia was 4%, lower than that reported in a recent review (8). This discrepancy may be attributable to the implementation of preventive strategies, such as the use of acetylsalicylic acid (ASA) and enhanced prenatal monitoring for women with Sjögren's disease in Norway (22).

This study found that the cohort of women with Sjögren's disease maintained high and stable HRQoL throughout pregnancy. Contributing factors may include high rates of preconception counseling, good overall health status, higher educational attainment, and a predominance of planned pregnancies. Participants also reported relatively low levels of pain and perceived disease burden. These findings are clinically relevant for midwives, obstetricians, and other healthcare professionals involved in antenatal care, as they emphasize the importance of tailored, person-centered approaches to support women with Sjögren's disease during pregnancy. Furthermore, the results highlight the importance of preconception counseling, structured pregnancy planning, and strategies that promote physical activity and fatigue management, as these may contribute to improved maternal well-being and pregnancy outcomes.