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. 2024 Sep 30;88(3):177–184. doi: 10.1177/03080226241284727

Sjögren’s disease, occupational performance and quality of life

Beatriz Carneiro Cintra 1,✉, Mateus Maia Marzola 1, Regina Yoneko Dakuzaku Carretta 1, Fabíola Reis Oliveira 1, Eduardo Melani Rocha 1
PMCID: PMC12033683  PMID: 40343152

Abstract

Introduction:

Sjögren’s disease is an autoimmune disease with dry eyes and mouth and chronic pain, more frequent in middle-aged women. The aim of this study is to understand the impact of Sjögren’s disease on quality of life and occupational health.

Method:

Quantitative and qualitative comparative study, with 20 Sjögren’s disease and 25 healthy controls. Questionnaires and interviews were applied to assess occupational performance, quality of life, mood disorders, and sleep.

Results:

The combined major diagnostic parameters for Sjögren’s disease (focus score and anti-SSA/Ro positivity) were present in 85% of the Sjögren’s disease group. There was a correlation between the sicca symptom measured by the European League Against Rheumatism Sjögren’s Syndrome Patient Reported Index (ESSPRI), anxiety, and depression measured by the Hospital Anxiety and Depression Scale (HADS; r = 0.56; p = 0.009), as well as fatigue measured by the Profile of fatigue and discomfort questionnaire (PROFAD) (r = 0.78; p < 0.0001). Sjögren’s disease patients reported a loss of physical abilities, sleep disturbance, change in mood, social and occupational participation, and lower quality of life.

Conclusions:

Sjögren’s disease patients have poorer quality of life, loss of competencies, and sleep disturbances compared to controls. Novel strategies are necessary to improve occupational health in SjD.

Keywords: Occupational performance, occupational health, quality of life, Sjögren’s disease, chronic disease

Introduction

Sjögren’s disease (SjD) is a systemic autoimmune disease that affects the lacrimal and salivary exocrine glands, the main symptoms being dry eyes and dry mouth (Shiboski et al., 2017). Fatigue and chronic pain are frequent complaints in approximately 70% of patients (Ng and Bowman, 2010). In addition, SjD can affect organs such as the lungs, kidneys, skin, the nervous and blood systems and can also be associated with other diseases such as rheumatoid arthritis, fibromyalgia, and systemic lupus erythematosus. SjD is frequent in individuals from the fifth decade of life onwards and is about 10 times more common in women (Restrepo-Jimenez et al., 2019).

The literature shows that the symptoms of SjD severely affect the quality of life (López-Jornet and Camacho-Alonso, 2008), with a negative impact on mobility, usual activities, pain and discomfort, according to a Chilean study with 31 SjD patients. (Rojas-Alcayaga Gonzalo et al., 2022). Patients with SjD had also presented reduced physical ability and function on different sorts of daily activities, compared with a control group, affecting their occupational performance, as described in a study conducted at Newcastle University where 98 SjD patients were evaluated using the health assessment questionnaire and clinical data (Hackett et al., 2012a). Data analysis shows that patients with SjD had severe changes in the score of fatigue and quality of life measured by questionnaires and compared to the group without SjD (Milin et al., 2016).

In addition to fatigue and quality of life, sleep is also affected. Approximately 46.1% of people with SjD have poor sleep quality, which can impact spatial orientation ability, physical responses, reflex movements, mental health (Champey et al., 2006), trigger psychosomatic symptoms, and affect the immune system as well (Chung et al., 2019; Hackett et al., 2018).

We hypothesise that SjD can impact quality of life and occupational performance. To this end, we applied questionnaires measuring the quality of life, occupational performance, sleep and fatigue in individuals with and without SjD. The data collected was analysed and compared with each other to measure the impact of the disease.

The justification for the study is that SjD is among the most common rheumatic diseases, affecting between 0.3% and 1.5% of the world’s population (Qin et al., 2015). Previous studies and clinical follow-ups show these individuals’ difficulties in essential tasks such as eating, sleeping and working (Hackett et al., 2018; Kamel et al., 2009). Patients’ reports also point to this impact (Mertzanis et al., 2005):

When I’m sad, I turn on the shower and put my face down to pretend they’re tears because I can’t even cry from sadness. – sic.

We understand that knowledge of occupational performance and limitations on daily life activities and their potential correlations with clinical aspects will allow health professionals to act more efficiently, going beyond medication administration and considering better approaches, seeking an intervention plan that meets the complexities and needs of individuals with SjD.

The present study aims to assess the frequency and particular attributes of problems related to quality of life, occupational performance, sleep, pain and fatigue in SjD to verify if they are higher than those in the population of the same sex, age and demographic characteristics.

This data should provide a better understanding of the impacts of SjD and allow for future interdisciplinary intervention studies to improve the health and well-being of these individuals.

Patients and method

This study is characterised as cross-sectional, quantitative and comparative. It has been approved by the Institutional Ethical Committee in Research of Ribeirão Preto Medical School, University of São Paulo (FMRP-USP), under CAAE number 37688914.2.0000.5440, in addition to the written consent and approval of the participants.

SjD is diagnosed in patients within the following criteria: a) one or more inflammatory focal cumulation with 50 or more lymphocytes in an area of 4 mm2 of labial salivary gland, obtained by biopsy and evaluated by histology (focus score ⩾ 1); (b) positivity for serum autoantibodies SSA/Ro; (c) ocular surface vital staining >3, with lissamine green or sodium fluorescein eye drops; (d) Schirmer test ⩽5 mm in tears flow measured with specific filter paper; (e) whole unstimulated salivary flow ⩽0.1 mL/min. The first two items scored 3 points, and any of the last items scored 1 point. The confirmation of SjD diagnosis needs a score of at least 4 points, and the absence of other diseases as indicated in the exclusion criteria. Focus score ⩾ 1 or autoantibody positivity are primary diagnostic criteria so at least one is necessary to confirm the SjD diagnosis. The presence of positivity in both indicates strong evidence and homogeneity of the disease (Shiboski et al., 2017).

Data was collected from 20 SjD patients at the Clinical Hospital, Ribeirão Preto Medical School, University of São Paulo, and 25 healthy age- and sex-matched controls. Therefore, both groups were in the same age group and gender distribution, allowing a closer analysis of occupational roles and other factors. Data was tabulated in a spreadsheet and graphs/tables, allowing comparative and statistical analysis.

Data on quality of life was collected using the SF-36 questionnaire (The Medical Outcomes Study 36-item Short-Form Health Survey), which approaches the following categories: physical functioning, body pain, general health perceptions, vitality, social functioning, emotional role limitations and mental health (Ware JE Jr, Sherbourne CD). The MOS 36-item short-form health survey (SF-36).

Data on fatigue was collected using the Profile of Fatigue and Discomfort (PROFAD) (Bowman et al., 2004) and anxiety using the Hospital Anxiety and Depression Scale (HADS; Zigmond and Snaith, 1983).

The Pittsburgh Sleep Quality Index (PSQI) (Buysse et al., 1989) was used to collect information on sleep quality. The tool consists of 19 questions assessing subjective sleep quality, sleep latency, sleep duration, habitual sleep efficiency, sleep disorders, use of sleep medication and daytime dysfunction (Bertolazi, 2008).

We also used the Occupational Self-Assessment Tool (OSA-BR), which consists of three steps: The first evaluates the performance of specific activities such as focusing on my tasks, physically doing what I need to do, household management, taking care of others for whom I am responsible, getting to the place I need to go, manage my money, dealing with my basic needs (food, medicine), express myself to others, coexist with other people and identifying and resolving problems. The second step evaluates the importance attributed by the individual to each activity. The third step indicates up to four items that the subject would like to change. We used the Occupational Role Identification List, which lists occupational roles in the past, present and future and the importance attributed by the individual to each occupational role performed (Tedesco, 2000).

The semi-structured interview script was produced based on the AOTA (2020), following the definitions presented for human occupations, focusing on gathering information specific to the occupation of work, and applied only for patients with SjD. We endeavoured to establish a comparison between this occupation before and after diagnosis, to understand the extent to which the chronic symptoms of SjD have impacted it (AOTA, 2020).

This script comprises 25 questions grouped into five categories to provide a more coherent development of the interview: the characterisation of work/income, impact and changes, psychosocial impacts, clinical issues and relationship with work and finally, proposals for inclusion at work. Some of the questions in this script include: How did you work before your diagnosis? What was your labour situation like after the diagnosis? How has this impacted your economic situation? Among others.

Statistical analysis

The data was allocated based on the occurrences in each group, with SjD and controls. All data was expressed using descriptive statistics and are stored in RedCap. Correlation between the different data obtained was carried out by comparing means or medians, depending on the normal distribution of the data and correlations with other clinical parameters by Chi-square test for categorical data and Pearson tests for continuous data. Demographic data and questionnaire scores were compared using the Mann–Whiney U test. A p-value <0.05 was considered significant. The data obtained from the interviews was recorded, transcribed and analysed using thematic content analysis, according to Minayo (1992).

Results

Instruments and questionnaires

The profile of the participants with SjD (n = 20) was predominantly female (95%), self-declared white (80%), 30% obese (IMC-OMS), aged 44.3 ± 10.1 years old, and with a disease duration of 4.5 ± 4.2 years. The control group (n = 25) was 100% female, self-declared white (72%), (32%) obese (IMC-OMS), and aged 49.42 ± 2.6 years old.

The focus score ⩾ 1 and anti-SSA/Ro positivity parameters were present together in 85% of SjD patients.

The mean current disease activity, measured by ESSDAI, was 2 (IQR 0-6), representing low activity. The patient’s reported symptom score (ESSPRI) was 5.96 ± 2.8 (0–10).

In the SjD group, 6 patients (30%) had a HADS questionnaire score ⩾11, which denotes a case with a strong suspicion of depression, and 3 patients (15%) had a score ⩾8, which suggests further investigation for humour and mental health. In the control group, 1 volunteer (4%) presented a score ⩾ 11 and 2 volunteers (8%) presented a score ⩾8. Therefore, the groups were statistically different, with p-value = 0.0307.

The groups showed a statistically significant difference (p < 0.0001) in the two parameters assessed by the PROFAD questionnaire: Physical Fatigue and Mental Fatigue. The median physical fatigue of the SjD group was 4.65 (IQR 5.31), while the control group had a median of 0.25 (IQR 1.12). Regarding Mental Fatigue, in the SjD group it was 4.75 (IQR 4.12), and in the control group was 0.00 (IQR 0.50).

There were positive correlations between ESSPRI scores, anxiety, and depression measured by the HADS (r = 0.56; p = 0.009), as well as fatigue measured by the PROFAD (r = 0.78; p < 0.0001). There was no relationship between symptoms and disease activity or damage.

Patients with SjD reported a loss of physical abilities, concentration, expressing themselves and household management compared to the control group (p < 0.05). Patients also expressed changes in mood and social participation, especially in work, leisure, physical activity and friendship relations.

From the OSA-BR questionnaire, it was noticed that SjD patients presented a lower score in the performance of activities: focusing on my tasks, physically doing what I need to do, household management, taking care of others for whom I am responsible, getting to the place I need to go, dealing with my basic needs (food, medicine), expressing myself to others, coexisting with other people, and identifying and resolving problems; when compared with controls (p < 0.05). Managing my money was the only performance activity similar between the groups (p > 0.05; Table 1).

Table 1.

Results of the questionnaires on occupational performance and importance of activities (OSA-BR) applied to groups of SjD patients and healthy controls. The median expresses the values.

OSA-BR questionnaire SjD group (n = 20) Control group (n = 25) p-Value
Having problems to do Not having problems to do Having problems to do Not having problems to do
Focus on my task, n (%) 12 (60.0) 8 (40.0) 1 (4.0) 24 (96.0) <0.0001
Physically doing what I need to do, n (%) 15 (75.0) 5 (25.0) 3 (12.0) 22 (88.0) <0.0001
Household management, n (%)
 15 (75.0) 5 (25.0) 1 (4.0) 24 (96.0) <0.0001
Taking care of myself, n (%) 12 (60.0) 8 (40.0) 2 (8.0) 23 (92.0) 0.0003
Taking care of others, n (%) 6 (31.58) 13 (68.42) 0 (0.0) 24 (100.0) 0.0045
Get to the place I need to go, n (%) 11 (55.0) 9 (45.0) 0 (0.0) 25 (100.0) <0.0001
Express myself to others, n (%) 12 (60.0) 8 (40.0) 6 (24.0) 19 (74.0) 0.0307
Coexist with other people, n (%) 6 (30.0) 14 (70.0) 0 (0.0) 25 (100.0) 0.0048
Identify and resolve problems, n (%) 9 (45.0) 11 (55.0) 4 (16.0) 21 (84.0) 0.0488
Managing my money, n (%) 6 (30.0) 14 (70.0) 4 (16.0) 21 (84.0) 0.3011
Dealing with my basic needs, n (%) 9 (45.0) 11 (55.0) 3 (12.0) 22 (88.0) 0.0188
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Regarding the assessment of the importance that the individual attributes to each activity, all parameters were similar and demonstrated to have the same level of importance in the activities of both groups.

On ‘take care of others’, one participant of each group did not answer since they were not responsible for other people’s care.

Among the participants with SjD, 75% were married, 35% were responsible for looking after the home, and 55% were employed in some paid work. In contrast, among the control group, 48% were married, 12% were responsible for looking after the home and 72% were in ‘paid work’. In addition, the quality of life scores of the participants with SjD were lower than those of the controls, demonstrating inferior quality of life, in all domains of the SF-36 questionnaire (p < 0.05; Table 2).

Table 2.

Results of the questionnaires of occupational performance and quality of life applied to groups of SjD patients and healthy controls. The median expresses the values.

SF-36’s domains SjD group (n = 20) Control group (n = 25) p-Value
Physical functioning, median (IQR) 42.50 (72.50) 100.00 (5.00) <0.0001
Physical role limitations, median (IQR) 0.0 (81.25) 100.00 (12.50) 0.0002
Bodily pain, median (IQR) 41.00 (27.75) 100.00 (39.00) <0.0001
General health perceptions, median (IQR) 43.50 (48.75) 87.00 (25.00) <0.0001
Vitality, median (IQR) 25.00 (37.50) 75.00 (45.00) 0.0001
Social functioning, median (IQR) 56.25 (71.88) 100.00 (50.00) 0.0215
Emotional role limitations, median (IQR) 0.0 (91.67) 100.00 (83.40) 0.0084
Mental health, median (IQR) 54.00 (46.00) 80.00 (30.00) 0.0009
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In reference to the PSQI score, among the participants with SjD, 70% had sleep disturbances, 25% had poor sleep quality and only 5% had good sleep quality. The control group presented rates of 12%, 60%, and 28%, respectively, and the comparison was performed using the Chi-square test (p = 0.003). In addition, 60% of the participants with SjD reported dry eyes and mouth, 10% reported pain, and 15% fatigue as the main symptoms of the disease that impacted their sleep performance. As well as on their daily occupations, 40% report daytime sleepiness, possibly related to the presence of a sleep disorder or poor sleep quality. The SjD group, on average, took approximately 15 minutes longer to fall asleep than the control group and slept approximately 3 hours less than the control group (p < 0.05; Table 3).

Table 3.

Pittsburgh Sleep Quality Index (PSQI) questionnaire results. The mean expresses the values.

PSQI score SjD group (n = 20) Control group (n = 25) p-Value
Good sleep quality, n (%) 1 (5.00) 7 (28.00) 0.003
Poor sleep quality, n (%) 5 (25.00) 15 (60.00)
Sleep disturbances, n (%) 14 (70.00) 3 (12.00)
Minutes to fall asleep, mean, (SD) 27.15 (±22.38) 12.52 (±12.61) 0.0082
Sleep hours, mean (SD) 4.57 (±1.13) 7.36 (±1.38) <0.0001
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Results from scripted interview

The scripted interview focused on work, analysing and comparing the conditions of the occupation before and after the diagnosis of SjD, and was applied to 5 women participating in the SjD group. The profile of the interviewees work occupation was as follows: 1 participant in formal employment in an administrative activity, 2 participants unemployed and financially dependent on their husband, and 2 participants providing home from cleaning services, one of whom occasionally works as a day labourer and the other who has worked continuously for the same family for some years.

The analysis of the interviews showed that all of the interviewees had a significant impact on their work as a result of the symptoms of SjD, such as joint pain, fatigue and oedema in the extremities (Lackner et al., 2017).

Joint pain. A lot of tiredness, fatigue so constant and direct. A lot of pain; the foot swells, goes numb, and itches. (E.A.L)

They also reported loss of physical ability to carry out the activities assigned to them as a result of fatigue, joint or generalised pain and other symptoms resulting from SjD. This consequently led to an increase in the time needed to complete each activity and a search for strategies and adaptations to carry them out. In addition, there was a reduction in the hours worked or loss of opportunities for occasional work, such as daily cleaning jobs, compared with the opportunities and performance these patients had before the manifestation of SjD.

I work less because I can no longer climb the stairs to clean the fan; I have to put the cloth on the squeegee to clean it. I come around once a week (cleaning), doing it three times a week. I can’t cope like I used to. (E.A.L)

We found that four out of the five interviewees lost formal employment opportunities with benefits and salaries above their current income due to the symptoms of SjD and other associated physical and mental health problems (Callhoff et al., 2019).

I’ve already lost a formal job. It was a cleaning job. It was more than 8 hours of work. Working shifts. It was outsourced. I told him about my health problems, and he said I couldn’t do it, because there was a lot of pain in my joints, and it was all day every day. My foot swells. (E.A.L)

Of the five interviewees, only Mrs L.A. had a permanent job and was the only one considering her income sufficient for her maintenance. Despite this, she was worried about the future if her health condition worsened and prevented her from working, resulting in unemployment and financial difficulties for her and her family. This was the reason for her constant anxiety.

  • Patient 1: Mrs. F.D.S. is unemployed and depends on her husband’s income to keep their home, herself, and her daughter afloat. On days when she has mild symptoms, she manages to make sweets to order as a way of earning an income to fulfil her personal needs and desires minimally.

  • Patient 2: Mrs E.A.C, another interviewee, is in a similar situation: her husband has forbidden her from working due to complaints of pain and fatigue. As a result, she is currently financially dependent on him and reports discomfort in this situation, which forces her to ask for money, leaving her dependent on him to carry out essential activities, such as maintaining the house, purchasing food, basic hygiene items, medication, bus fares, and any other need.

I’m disgusted because everything depends on my husband. I have to ask him for money, so it’s difficult. I don’t buy clothes; my sister-in-law always gives them to me when she doesn’t wear them anymore. (E.A.C)

On the other hand, the interviewees who work as cleaners report that, despite the pain and discomfort, they do not miss work and do so even in agony because they depend on this source of income as a subsistence for themselves and their dependents. Their income, however, is insufficient to cover essential costs and is lower than before their diagnosis (Priori et al., 2021).

  • Patient 3: Mrs E.A.L. left her hairdresser profession due to the symptoms of joint pain and oedema caused by SjD and works. Currently, she does informal cleaning work.

For some time now, when they call me, I go even if I’m ill; whether I’m in pain or not, I have to. I don’t stop going; I go anyway. I take pain medication, and I go anyway. . . Today we have a hard time at home. . . (E.A.L).

The change of occupation occurred with the change of professional activity as a result of unemployment or the impossibility of executing tasks arising from the profession. In this case, the employees proposed a change of area and/or professional activity.

Discussion

The present work reveals that SjD’s quality of life and occupational performance are impaired. The methods to evaluate these outcomes included structured questionnaires to obtain performance scores and compared to values obtained from healthy controls and interviews to assess qualitatively SjD individuals’ descriptions.

The literature points out that SjD diagnoses can take years, and even when patients present symptoms such as dry mouth, dry eyes, vaginal dryness, fatigue and joint pain, it takes longer to confirm the diagnosis suspects and to start the treatment that improves their daily lives. Considering this, the interviews in our study asked for information regarding the periods before and after the diagnosis. It is important to emphasise the possibility that these individuals are already suffering the impacts of the disease even before it is diagnosed. Therefore, their concept of quality of life, occupational health and work performance could have already been altered.

The recent letter on patients’ perspectives from ‘Sjögren’s Foundation’ and ‘Sjögren’s Patient’ indicates that as health professionals, we must try a better approach to listening to the patients’ complaints, to reduce the delay until diagnosis conclusion and consider other symptoms and other demographic groups. The earlier the diagnosis, the better the prognosis, and the chances to prevent some cumulative damage and improve daily life, quality of life and occupational health (Hammitt, 2020).

Another critical point concerns the period in which the research was carried out, between the end of 2021 and throughout 2022, times of greater flexibility in the COVID-19 pandemic, regarding preventive distancing measures.

We must consider that this atypical and unique event has resulted in several mental health issues such as stress, anxiety and fear, as well as impact the quality of life, economic stability, unemployment and other factors in both SjD and control groups. This could become a bias in our data collection.

A study comparing anxiety and depression in rheumatic patients, health workers and academic workers evaluated more than 2000 individuals in Turkey and showed a higher impact on health workers’ mental health during COVID-19 than on rheumatic patients. This leads to reflection on the occurrence of a similar effect on the mental health metrics of our study participants, and on a possible misunderstanding or underestimation of the symptoms and challenges experienced, whether attributable to the illness, or to the more complex general life. scenario of living in a pandemic (Seyahi et al., 2020).

According to the World Health Organization, health is a ‘state of complete physical, mental, and social well-being, not merely the absence of disease or infirmity’. It is a highly complex and challenging standard to achieve, so lately, the definition of health and the necessity of new perspectives are being discussed. In this study, during the selection of the control group, each participant answered questions about their general health to verify compatibility with health criteria. All the individuals in the control group denied having any physical or mental health problems or sleep disorders, considering themselves as entirely healthy. Unexpectedly, however, the questionnaires raised health issues throughout the interviews, which were not reported or perceived by the individuals at first. The reflection is that the control group, composed mainly of carers of patients with SjD, is directly affected by their perspective on health and what they understand as ‘being healthy’. There is a high chance that these caregivers experience symptoms of anxiety and depression as they have a loved one undergoing treatment and are directly involved in monitoring their illness.

Another hypothesis that arises to explain this finding is that health is perceived by the general population as a simple measure related to physical aspects; not aligned with WHO definitions. This is not just a theoretical concept but also a significant one in health practice, perception, promotion, services and policies. Based on a recent scientific debate, the nine theoretical coordinations that guide the construction of different definitions of health, make the perspective and approach more realistic for diverse groups like elderly patients, people with cultural differences, people with disabilities and chronic diseases (Leonardi, 2018).

The results obtained in this study indicate that patients with SjD have an impoverished quality of life and lower employability, loss of skills and self-confidence and lower social participation sleep quality compared to individuals in the control group. A similar approach, in Chile, evaluated the quality of life, subjective experience of each patient and their oral health, concluding that the experience of illness in the SjD women affects all patients’ quality of life aspects (Rojas-Alcayaga et al., 2022).

The literature points out that SjD patients present more impact on quality of life than other chronic inflammatory diseases. More than dryness, fatigue was the most prevalent symptom of the impact on quality of life (Miyamoto et al., 2021). Still, most studies do not evaluate the domains with the worst performance, such as psychological, oral, ocular, sexual and sleep disorders. The loss of quality of life, skills, and self-confidence, lower employability and social participation sleep quality were shown to be independent of disease activity (ESSDAI) or damage (SSDI) and correlate with higher symptom scores (ESSPRI, PROFAD, HADS).

Since the SjD and the symptoms significantly impact daily life, work is one of the most impacted occupations. Unemployment, occupational insecurity due to occasional or informal work, financial dependence on the husband and fear of losing one’s job in the event of progression of the clinical condition of SjD and its associated symptoms or illnesses were all directly related to financial insecurity for women with SjD and, consequently, their dependents. Similar to funds from the Netherlands, when evaluating the 196 participants with SjD, only approximately half were paid employees. Compared to the Dutch population, patients were significantly less employed, worked fewer hours, and were fewer hired on full-time jobs. They also presented higher sick leave from work than the general population. The non-highly educated patients were less often employed as well (Meijer et al., 2009).

The inclusion of an interdisciplinarity to care for these individuals in all their contexts, whether clinical, psychosocial or occupational health, developing a patient-centred therapeutic plan would help to improve the scenario. (The American Journal of Occupational Therapy, 2020).

Occupational therapy has much to contribute to the integral view of human occupation and may act with SjD patients, contemplating occupational demands, skills and competencies. These impact the full realisation of occupations, seeking to promote autonomy and independence in search of a whole life. A study in the UK included 69 primary SjD patients and the same number of sex- and age-matched controls, evaluating the functional ability and other assessments of both groups. The results pointed to a significantly reduced functional capacity in primary SjD patients; a reduced physical ability/functioning in different varieties of daily activities related to functional capacity and clinical features of primary SjD. A follow-up with occupational therapy and new approaches for daily basic needs guaranteed more independence and autonomy (Hackett et al., 2012b).

Here, we demonstrated a huge instability in the patients’ work situation and, consequently, financial insecurity, placing them and their dependents in a situation of risk and vulnerability. The analysis of the financial insecurity in autoimmune disease in developing countries shows that the disease’s effects on patients and families significantly impact disease treatment. The costs are directly linked to healthcare, so non-wealthy patients may have delayed or worse treatment and engagement. The indirect costs are outside the healthcare system, a share of expenditure incurred by individuals and society, such as work absence, work productivity, and disability. Additionally are the intangible costs related to the symptoms and their impact on patients’ daily lives (Nkeck et al., 2024). In this respect, public policies can reduce financial insecurity at the individual level and promote the social integration of patients.

Some strategies are simpler, such as promoting social and work reintegration of patients with associations and group therapies. From this perspective, occupational therapists can provide a treatment approach based on pain management, energy conservation, joint protection, oedema care, ergonomic work analysis and other techniques that could be used in physical health to promote better participation in occupations in general, but especially in the occupation of work.

Conclusion

Patients with primary SjD present physical disabilities, unemployment and financial insecurity, which impact self-confidence, quality of life and social participation, compared to the control group.

Respecting the difficulties and limitations that the disease imposes on these individuals, community recognition and support, labour measures and laws are necessary to include this population in work activities. Shorter working hours, adjusted equipment, assistive technologies, ergonomically appropriate environments and furniture are ways of adapting work activities and making them more accessible to the conditions faced by people with SjD.

Key findings

  • The SjD impacts the quality of life, employability, diverse skills, social participation, occupational performance, sleep quality and mental health. This occurs despite the pharmacologic treatment, highlighting the need for novel approaches.

What the study has added

This study points to the demands and needs of these individuals with SjD. It brings the importance of an interdisciplinary approach and the importance of Occupational Therapy in the SjD scenario.

Footnotes

Research ethics: It has been approved by the CEP of Ribeirão Preto Medical School, University of São Paulo (FMRP-USP), under CAAE number: 37688914.2.0000.5440, on May of 2021.

Consent: This study has the consent and approval of the participants.

Patient and public involvement data: During the development, progress, and reporting of the submitted research, Patient and Public Involvement in the research was included in the reporting of the research.

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding: The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research was funded by following Brazilian institutions: The São Paulo Research Foundation (FAPESP) 2014/23211-0 and 2022/03521-0; The Brazilian National Council for Scientific and Technological Development (CNPq) Research Productivity Scholarship: 1C 302355/2017-0, 01/03/2018 to 28/02/2022; “Fundação de Apoio ao Ensino, Pesquisa e Assistência do Hospital das Clinicas” of Ribeirao Preto Medical School, São Paulo University (FAEPA), Research Core of Ocular Physiopathology and Therapeutics from University of São Paulo (NAP-FTO) 12.1.25431.01.7, and Coordenação de Aperfeiçoamento de Pessoal de Nível Superior, financial code 001.

Contributorship: Cintra, BC wrote the research project, carried out most of the quantitative and qualitative data collection, as well as preparing the semi-structured interview instrument and transcribing them. Also analysing and discussing the data and paper writing, with the perspective of Occupational Therapy.

Marzola, MM has contributed to part of the collection, and analysis of quantitative data and tables.

Carretta, RYD contributed to the development of semi-structured interview instruments and definition of the qualitative data analysis method.

Oliveira, FR was the research advisor, contributing with the perspective of rheumatology in structuring the research, collecting and analysing data, in addition to analysis, discussion of results and writing.

Rocha, EM was the research advisor in the construction of the research project, submission to the ethics committee and funding partnerships. Contributed toh the perspective of ophthalmology in the analysis, discussion of results and writing.

ORCID iDs: Beatriz Carneiro Cintra Inline graphic https://orcid.org/0000-0002-3034-8177

Mateus Maia Marzola Inline graphic https://orcid.org/0000-0001-8337-2325

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