Patient Care Pathways for Pregnancy in Rare and Complex Rheumatic Diseases: Results From an International Survey

Chiara Tani; Dina Zucchi; Elisa Bellis; Mehret Birru Talabi; Charlotte Frise; Guilherme Ramires de Jesús; Hege Svean Koksvik; Gema Maria Lledó; Arsène Mekinian; Diana Marinello; Ilaria Palla; Puja Mehta; Luis Sáez Comet; Shoela Shaimaa; Hieronymus T W Smeele; Rosaria Talarico; Antonio Brucato; Munther Khamashta; Yehuda Shoenfeld; Angela Tincani; Marta Mosca

doi:10.3899/jrheum.220773

Patient Care Pathways for Pregnancy in Rare and Complex Rheumatic Diseases: Results From an International Survey

J Rheumatol. 2023 Jul;50(7):934-938. doi: 10.3899/jrheum.220773. Epub 2023 Jan 15.

Authors

Chiara Tani¹, Dina Zucchi², Elisa Bellis³, Mehret Birru Talabi⁴, Charlotte Frise⁵, Guilherme Ramires de Jesús⁶, Hege Svean Koksvik⁷, Gema Maria Lledó⁸, Arsène Mekinian⁹, Diana Marinello¹⁰, Ilaria Palla¹¹, Puja Mehta¹², Luis Sáez Comet¹³, Shoela Shaimaa¹⁴, Hieronymus T W Smeele¹⁵, Rosaria Talarico¹, Antonio Brucato¹⁶, Munther Khamashta¹⁷, Yehuda Shoenfeld¹⁸, Angela Tincani¹⁹, Marta Mosca²⁰

Affiliations

¹ C. Tani, MD, PhD, R. Talarico, MD, PhD, M. Mosca, MD, PhD, Rheumatology Unit, Azienda Ospedaliero Universitaria Pisana and Department of Clinical and Experimental Medicine, University of Pisa, Pisa, Italy.
² D. Zucchi, MD, Rheumatology Unit, Azienda Ospedaliero Universitaria Pisana and Department of Clinical and Experimental Medicine, University of Pisa, Pisa, and Department of Medical Biotechnologies, University of Siena, Siena, Italy.
³ E. Bellis, MD, Rheumatology Unit, Mauriziano Umberto I Hospital, Turin Italy, and Rheumatology Unit, University and IRCCS Policlinico S. Matteo Foundation, Pavia, Italy.
⁴ M. Birru Talabi, MD, PhD, University of Pittsburgh School of Medicine, Pittsburgh, Pennsylvania, USA.
⁵ C. Frise, MD, Oxford University Hospitals NHS Foundation Trust, Oxford, UK.
⁶ G.R. de Jesús, MD, Universidade do Estado do Rio de Janeiro, Rio de Janeiro, Brazil.
⁷ H.S. Koksvik, MD, Norwegian National Advisory Unit on Pregnancy and Rheumatic Diseases, St. Olavs Hospital, Trondheim University Hospital, Trondheim, Norway.
⁸ G.M. Lledó, MD, Department of Autoimmune Diseases, Hospital Clinic, University of Barcelona, Barcelona, Spain.
⁹ A. Mekinian, MD, Sorbonne University, Internal Medicine Department, Saint Antoine Hospital, Paris, France.
¹⁰ D. Marinello, Rheumatology Unit, Azienda Ospedaliero Universitaria Pisana, University of Pisa, Pisa, Italy.
¹¹ I. Palla, Institute of Management, Scuola Superiore Sant'Anna, Pisa, Italy.
¹² P. Mehta, MD, Centre for Inflammation and Tissue Repair, UCL Respiratory, University College London, London, UK.
¹³ L.S. Comet, MD, Unidad de Enfermedades Autoinmunes Sistémicas, Servicio de Medicina Interna, Hospital Universitario Miguel Servet, Zaragoza, Spain.
¹⁴ S. Shaimaa, MD, Internal Medicine & Rheumatology Department, Alexandria Faculty of Medicine, Alexandria, Egypt.
¹⁵ H.T.W. Smeele, MD, Department of Rheumatology, Erasmus MC, Rotterdam, the Netherlands.
¹⁶ A. Brucato, MD, Università di Milano, Department of Biomedical and Clinical Sciences, Milan, Italy.
¹⁷ M. Khamashta, MD, PhD, Department of Women and Children's Health, King's College London, London, UK, and Gulf Medical Expert-Lupus, GSK, Dubai, UAE.
¹⁸ Y. Shoenfeld, MD, FRCP, Ariel University, Ariel, Israel.
¹⁹ A. Tincani, MD, Unit of Rheumatology and Clinical Immunology, ASST Spedali Civili di Brescia, Brescia, Italy.
²⁰ C. Tani, MD, PhD, R. Talarico, MD, PhD, M. Mosca, MD, PhD, Rheumatology Unit, Azienda Ospedaliero Universitaria Pisana and Department of Clinical and Experimental Medicine, University of Pisa, Pisa, Italy; marta.mosca@med.unipi.it.

PMID: 36642433
DOI: 10.3899/jrheum.220773

Abstract

Objective: To map existing organizational care pathways in clinical centers of expertise that care for pregnant women affected by rare and complex connective tissue diseases (rcCTDs).

Methods: An international working group composed of experts in the field of pregnancy in rcCTDs co-designed a survey focused on organizational aspects related to the patient's pathway before, during, and after pregnancy. The survey was distributed to subject experts through referral sampling.

Results: Answers were collected from 69 centers in 21 countries. Patients with systemic lupus erythematosus and/or antiphospholipid syndrome were followed by more than 90% of centers, whereas those with disorders such as IgG4-related diseases were rarely covered. In the majority of centers, a multidisciplinary team was involved, including an obstetrician/gynecologist in 91.3% of cases and other healthcare professionals less frequently. Respondents indicated that 96% of the centers provided routine pre-pregnancy care, whereas the number of patient visits during pregnancy varied across centers. A formalized care pathway was described in 49.2% of centers, and 20.3% of centers had a predefined protocol for the monitoring of pregnant patients. Access to therapies during pregnancy also was heterogeneous among different centers.

Conclusion: In international referral centers, a high level of care is provided to patients with rcCTDs before, during, and after pregnancy. No significant discrepancies were found between European and non-European countries. However, this work highlights a potential benefit to streamlining the care approaches across countries to optimize pregnancy and perinatal outcomes among patients with rcCTDs.

Keywords: complex diseases; pregnancy; rare diseases.

MeSH terms

Connective Tissue Diseases*
Critical Pathways
Female
Humans
Lupus Erythematosus, Systemic* / drug therapy
Pregnancy
Prenatal Care
Rheumatic Diseases* / therapy
Surveys and Questionnaires