Tani, Chiara;
Zucchi, Dina;
Bellis, Elisa;
Talabi, Mehret Birru;
Frise, Charlotte;
De Jesús, Guilherme Ramires;
Koksvik, Hege Svean;
... Mosca, Marta; + view all
(2023)
Patient Care Pathways for Pregnancy in Rare and Complex Rheumatic Diseases: Results From an International Survey.
The Journal of Rheumatology
, 50
(7)
, Article 220773. 10.3899/jrheum.220773.
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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 deployed to subject experts via 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, while diseases such as IgG4-related diseases were rarely covered. In the majority of centers, a multidisciplinary team was involved, including an obstetrician/gynaecologist in 91.3% of cases and other healthcare professionals less frequently. Respondents indicated that 96.0% of the centers provided routine pre-pregnancy care, while 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 pre-defined 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 streamline the care approaches across countries in order to optimize pregnancy and perinatal outcomes among patients with rcCTDs.
| Type: | Article |
|---|---|
| Title: | Patient Care Pathways for Pregnancy in Rare and Complex Rheumatic Diseases: Results From an International Survey |
| Location: | Canada |
| Open access status: | An open access version is available from UCL Discovery |
| DOI: | 10.3899/jrheum.220773 |
| Publisher version: | https://doi.org/10.3899/jrheum.220773 |
| Language: | English |
| Additional information: | This version is the author accepted manuscript. For information on re-use, please refer to the publisher’s terms and conditions. |
| Keywords: | pregnancy, rare diseases, complex diseases |
| UCL classification: | UCL UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences > Div of Medicine UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences > Div of Medicine > Respiratory Medicine |
| URI: | https://discovery-pp.ucl.ac.uk/id/eprint/10164112 |
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