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Rheumatology
Original research
Sexual and reproductive health from the perspective of patients with autoimmune rheumatic diseases in Mexico: a qualitative study
  1. Cassandra Michelle Skinner-Taylor1,
  2. Lorena Perez-Barbosa1,
  3. Abraham Yair Lujano-Negrete2,
  4. Fanny Arévalo-Nieto2,
  5. Maria Eugenia Corral-Trujillo2,
  6. Andrea Aguilar-Leal2,
  7. Génesis Guadalupe Sandoval-Torres2,
  8. Cecilia Rodríguez-Ruiz2,
  9. Melanie Gabriela Rios-Medina2,
  10. Amaranta Manrique de Lara3,
  11. Dionicio Angel Galarza-Delgado1,
  12. Ingris Pelaez-Ballestas3
  1. 1 Rheumatology, Hospital Universitario. Dr. José Eleuterio González, Monterrey, Mexico
  2. 2 Hospital Universitario. Dr. José Eleuterio González, Monterrey, Mexico
  3. 3 Rheumatology, Hospital General de México "Dr. Eduardo Liceaga", Mexico City, Mexico
  1. Correspondence to Dr Ingris Pelaez-Ballestas; pelaezin{at}gmail.com

Abstract

Objectives To explore the experiences and perspectives of female patients with autoimmune rheumatic diseases (ARDs) regarding sexual and reproductive health, including contraception, family planning, and pregnancy.

Design Qualitative descriptive study using semi-structured interviews.

Setting Specialised rheumatology clinic in a tertiary hospital in Monterrey, Mexico.

Participants 21 female patients aged 18–49 with a confirmed ARD diagnosis who were receiving care at the clinic. Participants were selected using convenience sampling, ensuring diversity in age, disease type and stage, socio-economic and cultural background, sexuality and disability status. All participants completed the study.

Results Four main themes emerged from the analysis. First, participants expressed confusion and concern about the safety and effectiveness of contraceptive methods in the context of their disease and treatment. Second, many participants shared anxiety about infertility, heredity and the risks of pregnancy associated with their ARDs, leading to uncertainty in pregnancy planning. Third, there was concern about the safety of medications during pregnancy and breastfeeding, indicating a lack of guidance and information from healthcare providers. Lastly, patients often deferred decision-making about contraception and medication to their rheumatologists but recognised the importance of a multidisciplinary care approach for comprehensive sexual and reproductive health management.

Conclusions The study revealed that women with ARDs experience significant challenges and unmet needs related to sexual and reproductive health, particularly in understanding safe contraception, pregnancy planning and medication use during pregnancy and lactation. These findings emphasise the need for rheumatologists to provide clearer guidance on these issues and collaborate closely with gynaecologists and other specialists to ensure comprehensive, patient-centred care. Enhancing communication and education strategies in rheumatology consultations could address these gaps and improve the sexual and reproductive health outcomes and decision-making processes of women with ARDs.

  • Qualitative research
  • Latin America
  • Reproductive Medicine
  • Rheumatology

Data availability statement

Data is available upon reasonable request. The data supporting the findings of this study are available from the corresponding author upon reasonable request. The data have been anonymised to protect participant confidentiality.

http://creativecommons.org/licenses/by-nc/4.0/

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

https://doi-org.ezproxy.u-pec.fr/10.1136/bmjopen-2024-086351

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    STRENGTHS AND LIMITATIONS OF THIS STUDY

    • This study used a qualitative approach, allowing for a detailed exploration of the perspectives and experiences of women with autoimmune rheumatic diseases (ARDs) regarding sexual and reproductive health.

    • This study highlights the concerns about heredity as a relevant aspect impacting the well-being of patients with ARDs who want to plan a pregnancy.

    • The inclusion of a diverse group of participants across various dimensions enhanced the richness of the data and made the findings applicable to a broader range of patients with ARDs.

    • The study was conducted in a specialised rheumatology clinic, which might limit the generalisability of the findings to patients in different healthcare settings; however, it provides valuable insights into patients receiving specialised care.

    • The analysis was performed using rigorous thematic analysis techniques, ensuring that the results were systematically interpreted and validated by multiple researchers.

    Introduction

    Autoimmune rheumatic diseases (ARDs) mainly affect female patients of reproductive age. Importantly, ARDs can increase the risk of complications during pregnancy or even cause a reduction in fertility during periods of disease activity.1 As such, topics related to sexual and reproductive health, family planning and high-risk pregnancy management should be prioritised during the rheumatology consultation to encourage shared decision-making.2 3

    In recent years, the rheumatology consultation has begun incorporating sexual and reproductive health counselling. In Mexico, a recent study4 found that 28.9% of patients with ARDs did not use any contraceptive method, despite 71% being sexually active. Finally, patients conveyed little to no counselling about contraception from their managing rheumatologist.4

    Wolgemuth et al conducted a qualitative study with women with ARDs in the USA, who reported wishing that rheumatologists initiated conversations about sexual and reproductive health and that they provided information about any risks to the fetus related to the disease or medication.5 This study highlights the importance of communication and follow-up of sexual and reproductive health during the rheumatology consultation. Similarly, a qualitative study done in Brazil highlights the lack of use or improper use of contraceptive methods among women with systemic lupus erythematosus (SLE), which reflects an important limitation in the care of this group of patients.6

    Overall, people with ARDs have unmet information and support needs regarding sexual and reproductive health, including the lack of a multidisciplinary approach to care.7

    Considering the above, this study aims to describe and analyse the experiences surrounding, and information about, the sexual and reproductive health of patients with ARDs in Mexico, using a qualitative approach. This study was conducted in a specialised rheumatology clinic in a tertiary hospital, which offers a unique opportunity to explore the experiences and perspectives of women with ARDs regarding sexual and reproductive health, as they receive care in a multidisciplinary environment.8

    Methods

    Study design

    This was a qualitative descriptive study using semistructured interviews,9 10 in order to gain an in-depth understanding of the experiences, perspectives, knowledge, attitudes and concerns of patients with ARDs in relation to their sexual and reproductive health.

    Study setting

    The study was conducted at a specialised rheumatology clinic in a tertiary hospital in Monterrey, Mexico. This clinic provides comprehensive care for patients with ARDs, including sexual and reproductive health counselling, and serves a diverse patient population with varying socio-economic backgrounds.

    Sample and study population

    We recruited 21 female patients aged 18–49 with a confirmed diagnosis of an ARD, including RA, SLE and spondyloarthritis.

    Participants were recruited from a specialised reproductive health and pregnancy clinic that focuses on the unique needs of patients with ARDs. This clinic employs a multidisciplinary-care model11 incorporating rheumatologists, obstetricians, psychologists, genetic counsellors, a paediatrician and social workers. The clinic is structured into three stages: preconception, prenatal and postnatal care. Access to the clinic is facilitated through referrals from the Rheumatology, and Obstetrics and Gynecology Departments. Notably, the services provided at this clinic are offered free of charge, alleviating financial burdens and enhancing access to essential care.

    Convenience sampling was used to ensure a diverse representation in age, disease type and stage, socio-economic and cultural background, sexuality and disability status. Inclusion criteria included being of reproductive age, having an ARD diagnosis for at least 6 months and being willing to participate in an in-depth interview. Patients with cognitive impairments or severe psychiatric conditions that could affect their ability to participate were excluded.

    Data collection

    Semistructured interviews were conducted from June 2022 to December 2022, each lasting from 45 to 60 min interviews.9 10 Depending on the participant’s preference, interviews took place either in a private setting within the clinic or virtually via a secure video conferencing platform. The interviews were conducted by a clinical psychologist and a social worker, both experienced in qualitative research. As part of the healthcare team at the clinic, the interviewers were previously known to the participants. However, interviewers reiterated their position, background, and previous research experience before each interview.

    An interview guide (online supplemental file 1) was carefully developed in consultation with researchers and patient experts (two rheumatologists, two patients with ARDs, a psychologist, a medical anthropologist and a social worker), based on their experience in reproductive healthcare and non-systematic reviews of the literature. The guide was subsequently validated through a pilot test with a subset of the participants. It encompassed key topics such as contraceptive methods, pregnancy planning, medication use during pregnancy and lactation, and decision-making related to sexual and reproductive health. All interviews were audio-recorded and transcribed verbatim for thorough analysis. Interviews were conducted in Spanish.

    Supplemental material

    Data analysis

    Thematic analysis of the interviews was performed, following Braun and Clarke’s framework: familiarisation with the data, generation of initial codes, search for themes, review of themes, definition and naming of themes and writing of results.12 Transcripts were independently coded by four researchers (CMS-T, LP-B, AYL-N, IP-B), three of whom were women (rheumatologists and a medical anthropologist) and one man (internal medicine resident). Each researcher summarised their coding in a table with representative quotes for each theme. Group meetings were held to discuss discrepancies, reach a consensus on interpretations and finalise the themes. The ATLAS.ti software was used to assist with data organisation and coding. Data saturation was reached when no new themes or information emerged from the interviews,13; this occurred after 18 interviews and any additional interviews were unlikely to provide further insights.

    Patient and public involvement

    Patients were actively involved in the development and validation of the interview guide. A group of five patients provided feedback on the clarity, relevance and comprehensiveness of the questions. Additionally, a subgroup of participants reviewed the preliminary findings to confirm that the themes accurately reflected their experiences, perspectives and concerns. This feedback was incorporated into the final analysis, ensuring that the study results were patient-centred and grounded in the real-world experiences of women with ARDs.

    Results

    We interviewed 21 female patients of reproductive age diagnosed with ARDs (table 1). We identified four main themes, each with various subthemes, as follows.

    View this table:
    Table 1

    Participant characteristics

    Theme 1: contraceptive methods

    Participants knew several contraceptive methods but reported doubts about their suitability, effectiveness and safety in the context of ARDs. Many participants relied on non-medical sources for information, such as family members, friends, online forums, social media and other patients with similar conditions, rather than seeking guidance from their healthcare providers. The most common concern was the potential interaction between ARD medications and different contraceptive methods, as well as concerns about the possible impact on fertility (table 2).

    View this table:
    Table 2

    Theme 1: contraceptive methods

    Theme 2: considerations for reproductive health and pregnancy planning

    Participants expressed uncertainty regarding reproductive health, often feeling that they lacked the necessary information to make informed decisions. The impact of ARDs on pregnancy, concerns about heredity and fears of infertility were recurring issues. Many participants voiced concerns about the impact of their condition on their ability to conceive and carry a pregnancy to term. Additionally, they expressed anxiety about passing on their condition to their children, although they often felt ill-informed about the actual risks involved (table 3).

    View this table:
    Table 3

    Theme 2: considerations for reproductive health and pregnancy planning

    Theme 3: care and medications during pregnancy and lactation

    Participants discussed the need for specialised care during pregnancy and lactation, noting that the presence of ARDs made this period particularly challenging. They reported feeling anxious about medication safety and potential side effects during pregnancy and breastfeeding, expressing that the information provided by healthcare professionals was often inadequate or inconsistent. Many participants expressed a desire for clearer guidelines and more comprehensive counselling from providers (table 4).

    View this table:
    Table 4

    Theme 3: care and medications during pregnancy and lactation

    Theme 4: reproductive healthcare and decision-making

    Most participants shared that discussion of sexual and reproductive health topics only occurred in the rheumatology consultation when they explicitly asked. Additionally, some reported feeling berated when asking questions, discouraging further patient-initiated conversations. Even so, participants frequently described delegating decisions about their reproductive health to their rheumatologists, indicating that patients trust the specialists’ guidance. This included decisions such as choice of contraceptive method, medication safety, pregnancy management and difficult choices. Contrastingly, patients tended to determine for themselves when to get pregnant, regardless of provider insights into the optimal timing for conception. Participants expressed a desire for a more collaborative, multidisciplinary approach to their care. Though participants had access to a multidisciplinary care team in the specialised clinic, some reported that this care was not consistently available due to a lack of communication between providers. They highlighted the importance of care teams including specialists from different disciplines to address the complexities of ARDs and family planning (table 5).

    View this table:
    Table 5

    Theme 4: reproductive healthcare and decision-making

    Overall, these findings indicate that patients with ARDs face significant challenges in accessing clear, consistent information about sexual and reproductive health, and many rely on their rheumatologists for guidance. Participants emphasised the importance of multidisciplinary care and expressed a desire for more comprehensive support in making informed decisions about their sexual and reproductive health.

    Discussion

    The present study highlights significant gaps in knowledge about sexual and reproductive health among patients with ARDs, as well as deficient communication about these topics. We identified four main aspects of sexual and reproductive health from the patients’ perspectives and based on their experiences, which should be taken into consideration for any interventions and incorporated into clinical care guidelines.

    Our results show that, though the importance of contraception is clear to many patients, steps are still needed to facilitate its implementation. Most of the participants lack sufficient understanding to discern between available methods or use them inconsistently, like what has been previously reported about patients with ARDs and other chronic conditions.6 14 15 This knowledge gap often leads to increased risks.6 14–16 Tools such as ReproKnow could be beneficial in assessing knowledge gaps in this area.17–19 Guidance on the safest and most effective options should consider the characteristics of each particular patient, including sociocultural and financial characteristics, their ARD diagnosis and potential interactions with medications or active disease.5 20 Particularly concerning is that patients using teratogenic medication or those with active disease are not necessarily more likely to receive contraceptive counselling or to use contraception, leading to further risks in case of an unplanned pregnancy.21

    Another relevant issue is disparities in access to care. Our participants mention barriers to access contraception based on a person’s social security or health insurance status; this gap in access to low- or no-cost contraception for patients with rheumatic diseases has been previously documented.21 In addition to socio-economic background, patient characteristics such as age and race/ethnicity are relevant to the use of contraception, potentially causing further disparities.22

    Notable aspects of reproductive health identified in this study are heredity and its implications for family planning. The genetic basis of ARDs is complex, and while familial aggregation has been documented,23–25 environmental factors also play a significant role in disease development. Many patients with ARDs are aware of the genetic basis of their conditions or they may have noticed a tendency in their own family histories, potentially leading them to believe in genetic predispositions for ARDs. Therefore, many patients are uncertain whether their offspring are at significant risk of developing the same condition, as has been reported in lupus and other ARDs.26 This concern was consistently expressed by participants in the present study, even though most of them had high levels of schooling and some had even received some previous genetic counselling. Since uncertainty about the heredity of ARDs often influences family planning,7 27 and since patients may over- or underestimate genetic risks, we highlight the need for rheumatologists to provide guidance on this topic. This should include information about both genetic and non-genetic risk factors, enabling patients to make informed decisions about family planning without undue fear or misconceptions.7

    Disease activity and medication use also emerged as key considerations for family planning. Many participants viewed disease management as a priority when planning for pregnancy, expressing concerns about the impact of ARDs on preconception health and pregnancy outcomes. This aligns with previous studies conducted in Brazil and Iran, where women with lupus reported varying levels of concern about disease activity and pregnancy risks.6 15 17 Similarly, many women with ARDs were uncertain about which treatments were compatible with pregnancy, reflecting a significant unmet need for clear and consistent information from healthcare providers.19 28 These findings highlight the necessity of addressing disease management and medication safety in reproductive health education for women with ARDs as pregnancy counselling plays a critical role in this process.5 27 29

    The rheumatologist–patient relationship plays a crucial role in reproductive healthcare and decision-making. There is often a disconnect between the need for guidance and the willingness of rheumatologists to engage in these discussions, with specialists frequently expressing discomfort or uncertainty about addressing sexual and reproductive health.5 30

    However, patients overwhelmingly prefer that their rheumatologists initiate these conversations.5 This discrepancy may be due to concerns about managing high-risk pregnancies, ethical considerations or a lack of confidence in discussing topics such as contraception, pregnancy or genetic risks.30

    According to our participants, reproductive health decision-making is almost always delegated to the rheumatologist, following a traditional model of care where the physician’s role is to provide information vertically and unilaterally, instead of facilitating a dialogue with patients, encouraging equal contribution and participating in horizontal exchanges for the co-construction of care.31 Alternative models of participatory healthcare are necessary for patients to fully exercise their agency and autonomy in the context of their ARD, especially regarding sexual and reproductive health where consideration for their life circumstances, and personal and cultural values is central.5 32 33 Understanding autonomy from a relational perspective, rheumatologists, along with family and community, can help shape patients’ self-determination and are central to their capacity to make informed decisions.34

    Improving communication and shared decision-making are necessary to enhance outcomes and adequately face the ethically complex situations and dilemmas that arise in the context of sexual and reproductive health, development and the beginning of life. Rheumatologists might be currently ill-equipped to ethically, sensitively and adequately navigate these complexities35 when they are required to act as facilitators and not assume a role of moral authority over decision-making which imposes their own values.22

    The importance of a multidisciplinary approach was also evident in our study as participants emphasised the need for coordinated care involving rheumatologists, gynaecologists and other specialists. This finding aligns with existing guidelines from organisations such as the American College of Rheumatology, the European Alliance of Associations for Rheumatology and others, which recommend collaboration among healthcare providers to ensure comprehensive care for women with ARDs.5 36 37

    An overarching theme that should be considered in sexual and reproductive healthcare is gender, considering that ARDs mainly affect the female population. The intersection between gender identity, sexual orientation, sociocultural expectations and chronic illness creates unique challenges for women and people able to conceive with ARDs, affecting their ability to navigate reproductive health decisions effectively.17 38 39. Recognising these gendered experiences is crucial for providing empathetic, patient-centred care that respects autonomy and reproductive rights.39 Importantly, though most patients identify as cis women, including all of this study’s participants, the gendered experiences of trans men, and non-binary and gender nonconforming patients able to conceive must be central to comprehensive sexual and reproductive healthcare.

    Some of the study limitations are related to the participant population. Our participants generally had more schooling than the average in Mexico. We only included women from a single healthcare centre in the country, which provides specialised sexual and reproductive healthcare for patients with ARDs. These characteristics explain the relatively higher knowledge of sexual and reproductive health topics among our study population compared with previous studies. However, information and communication with rheumatologists remains limited even considering these factors. An additional limitation is the missing perspective from rheumatologists which could help contrast experiences and provide a more complete understanding. Finally, social and cultural aspects of pregnancy were not explored in depth.

    In conclusion, the experiences of patients with ARDs regarding sexual and reproductive health were varied, reflecting a general scarcity of knowledge about sexual and reproductive health, including family planning and prenatal/postnatal care. Participants recognised the crucial importance of a multidisciplinary team, led by their rheumatologist, to ensure consistency in the information provided. Such an approach helps generate trust in the quality of the information provided and facilitates better decision-making based on patients’ beliefs, preferences and reproductive rights. Overall, it is important to develop educational strategies that consider the best available scientific evidence alongside the lived experiences and perspectives of patients and, when appropriate, their partners. Finally, incorporating a gender perspective at the centre of these strategies is vital to address the unique challenges faced by women and people able to conceive with ARDs when navigating their sexual and reproductive health.

    Data availability statement

    Data is available upon reasonable request. The data supporting the findings of this study are available from the corresponding author upon reasonable request. The data have been anonymised to protect participant confidentiality.

    Ethics statements

    Patient consent for publication

    Ethics approval

    The study was approved by the Ethics and Research Committees of the Hospital Universitario 'Dr. José Eleuterio González' with registration number RE18-00008. Written informed consent was obtained from all participants prior to their involvement in the study. Participants were assured confidentiality, and the data were anonymised during transcription and analysis.

    Acknowledgments

    We thank all the women who participated in this study for their trust and willingness to share their experiences. We also thank the team of health professionals at the Pregnancy and Rheumatic Diseases Clinic (CEER) and the Hospital General de México for their collaboration and support during the recruitment process.

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    Footnotes

    • CMS-T and LP-B are joint first authors.

    • X @lorenapbmd

    • Contributors All authors contributed to data analysis, drafting and revising the approved final version of the manuscript. CMS-T and LP-B contributed equally to this protocol. CMS-T, LP-B and IP-B conceptualised the study. CMS-T, LP-B, AYL-N, FA-N, MEC-T, AMdL and IP-B developed the methodology for the study, CMS-T, LP-B, AYL-N, FA-N, MEC-T, GGS-T, CR-R, MGR-M, DAG-D, AMdL and IP-B drafted the manuscript, and the rest of the coauthors critically reviewed and approved the final version of the manuscript. IP-B is the guarantor of the manuscript.

    • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

    • Competing interests None declared.

    • Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the Methods section for further details.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.