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Thromb Haemost 2021; 121(10): 1353-1360
DOI: 10.1055/a-1366-9261
Stroke, Systemic or Venous Thromboembolism

“Part of the Ritual”: Exploring Patient and Physician Decision Making Regarding Anticoagulation Use in Obstetric Antiphospholipid Syndrome

Leslie Skeith
1   Division of Hematology and Hematological Malignancies, Department of Medicine, University of Calgary, Calgary, Canada
2   Department of Community Health Sciences, University of Calgary, Calgary, Canada
,
Marc A. Rodger
3   Department of Medicine, McGill University, Montreal, Canada
,
Shannon M. Bates
4   Division of Hematology and Thromboembolism, Department of Medicine, McMaster University, Hamilton, Canada
,
Carol Gonsalves
5   Division of Hematology, Department of Medicine, University of Ottawa, Ottawa, Canada
,
Alan Karovitch
5   Division of Hematology, Department of Medicine, University of Ottawa, Ottawa, Canada
,
Taryn S. Taylor
6   Department of Obstetrics and Gynaecology, Western University, London, Canada
› Author Affiliations Funding This study was funded by the Foundation for Women and Girls with Blood Disorders Promoting XXcellence in Women's Health Grant. Dr. Leslie Skeith has received fellowship funding by CanVECTOR, the Canadian Venous Thromboembolism Research Network, to support this work.
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Abstract

Background Antiphospholipid syndrome is associated with recurrent pregnancy loss. Low-molecular-weight heparin (LMWH) and/or aspirin (ASA) prophylaxis during pregnancy to prevent future loss is based on limited trial data with mixed results.

Objectives Given the clinical equipoise, we sought to understand how patients and physicians navigate the decision-making process for use of LMWH and/or ASA in pregnancy.

Methods We interviewed 10 patients and 10 thrombosis physicians in Ottawa, Canada from January 2017 to March 2018. Patients who had ≥1 late pregnancy loss or ≥2 early losses and persistently positive antiphospholipid antibodies based on the revised Sapporo/Sydney criteria were identified in the a Thrombosis Clinic. Patients were also identified by the TIPPS Study screening logs of excluded patients. Data collection and analysis occurred iteratively, in keeping with constructivist grounded theory methodology.

Results Our analysis generated three themes, present across both patient and physician interviews, which captured a patient-led decision-making experience: (1) managing high stakes, (2) accepting uncertainty, and (3) focusing on safety. Patients and physicians acknowledged the high emotional burden and what was at stake: avoiding further pregnancy loss. Patients responded to their situation by taking action (i.e., using LMWH injections became a “ritual”), whereas physicians reacted by removing themselves from the final decision by “[leaving] it up to the patient.”

Conclusion Our findings should be considered when designing future research on studying the role for LMWH/ASA in this population, as it suggests that the perceived benefits of treatment go beyond improving pregnancy rates. Rather, patients described potential benefit from the process of taking action, even in the absence of a guaranteed good outcome.

Keywords

antiphospholipid syndrome - pregnancy complications - low-molecular-weight heparin - aspirin - qualitative

Author Contributions

L.S. developed the study, developed both interview guides, conducted the patient and physician interviews, analyzed the interview transcripts, and wrote the first and subsequent drafts of the manuscript. T.S.T. developed the study, developed the patient interview guide, conducted the patient interviews, analyzed the interview transcripts, and provided feedback on subsequent drafts of the manuscript. C.G. developed the study, developed the physician interview guide, contributed to the analysis of the physician study, and provided feedback on subsequent drafts of the manuscript. M.A.R., S.M.B., and A.K. helped to develop the study, provided feedback throughout, and contributed to drafts of the manuscript.


Supplementary Material



Publication History

Received: 26 August 2020

Accepted: 18 January 2021

Accepted Manuscript online:
20 January 2021

Article published online:
14 April 2021

© 2021. Thieme. All rights reserved.

Georg Thieme Verlag KG
Rüdigerstraße 14, 70469 Stuttgart, Germany

 

  • References

  • 1 Miyakis S, Lockshin MD, Atsumi T. et al. International consensus statement on preliminary classification criteria for definite antiphospholipid syndrome (APS). J Thromb Haemost 2006; 42: 295-306
    CrossrefPubMedSearch in Google Scholar
  • 2 Abou-Nassar K, Carrier M, Ramsay T, Rodger MA. The association between antiphospholipid antibodies and placenta mediated complications: a systematic review and meta-analysis. Thromb Res 2011; 128 (01) 77-85
    CrossrefPubMedSearch in Google Scholar
  • 3 Bates SM, Greer IA, Middeldorp S, Veenstra DL, Prabulos A-M, Vandvik PO. VTE, thrombophilia, antithrombotic therapy, and pregnancy: Antithrombotic Therapy and Prevention of Thrombosis, 9th ed: American College of Chest Physicians evidence-based clinical practice guidelines. Chest 2012; 141 (2, Suppl): e691S-e736S
    CrossrefPubMedSearch in Google Scholar
  • 4 Chan WS, Rey E, Kent NE. et al; VTE in Pregnancy Guideline Working Group, Society of Obstetricians and Gynecologists of Canada. Venous thromboembolism and antithrombotic therapy in pregnancy. J Obstet Gynaecol Can 2014; 36 (06) 527-553
    CrossrefPubMedSearch in Google Scholar
  • 5 Tektonidou MG, Andreoli L, Limper M. et al. EULAR recommendations for the management of antiphospholipid syndrome in adults. Ann Rheum Dis 2019; 78 (10) 1296-1304
    CrossrefPubMedSearch in Google Scholar
  • 6 Kutteh WH. Antiphospholipid antibody-associated recurrent pregnancy loss: treatment with heparin and low-dose aspirin is superior to low-dose aspirin alone. Am J Obstet Gynecol 1996; 174 (05) 1584-1589
    CrossrefPubMedSearch in Google Scholar
  • 7 Rai R, Cohen H, Dave M, Regan L. Randomised controlled trial of aspirin and aspirin plus heparin in pregnant women with recurrent miscarriage associated with phospholipid antibodies (or antiphospholipid antibodies). BMJ 1997; 314 (7076): 253-257
    CrossrefPubMedSearch in Google Scholar
  • 8 Farquharson RG, Quenby S, Greaves M. Antiphospholipid syndrome in pregnancy: a randomized, controlled trial of treatment. Obstet Gynecol 2002; 100 (03) 408-413
    PubMedSearch in Google Scholar
  • 9 Laskin CA, Spitzer KA, Clark CA. et al. Low molecular weight heparin and aspirin for recurrent pregnancy loss: results from the randomized, controlled HepASA trial. J Rheumatol 2009; 36 (02) 279-287
    CrossrefPubMedSearch in Google Scholar
  • 10 Greer IA, Nelson-Piercy C. Low-molecular-weight heparins for thromboprophylaxis and treatment of venous thromboembolism in pregnancy: a systematic review of safety and efficacy. Blood 2005; 106 (02) 401-407
    CrossrefPubMedSearch in Google Scholar
  • 11 Yelnik CM, Lambert M, Drumez E. et al. Bleeding complications and antithrombotic treatment in 264 pregnancies in antiphospholipid syndrome. Lupus 2018; 27 (10) 1679-1686
    CrossrefPubMedSearch in Google Scholar
  • 12 Rodger MA, Hague WM, Kingdom J. et al; TIPPS Investigators. Antepartum dalteparin versus no antepartum dalteparin for the prevention of pregnancy complications in pregnant women with thrombophilia (TIPPS): a multinational open-label randomised trial. Lancet 2014; 384 (9955): 1673-1683
    CrossrefPubMedSearch in Google Scholar
  • 13 Eckman MH, Alonso-Coello P, Guyatt GH. et al. Women's values and preferences for thromboprophylaxis during pregnancy: a comparison of direct-choice and decision analysis using patient specific utilities. Thromb Res 2015; 136 (02) 341-347
    CrossrefPubMedSearch in Google Scholar
  • 14 Skeith L, Bates SM, Bates V, Rodger MA. The challenges and lessons learned in conducting clinical trials in pregnant women with antiphospholipid syndrome. Thromb Res 2020; 194: 54-56
    CrossrefPubMedSearch in Google Scholar
  • 15 Watling CJ, Lingard L. Grounded theory in medical education research: AMEE Guide No. 70. Med Teach 2012; 34 (10) 850-861
    CrossrefPubMedSearch in Google Scholar
  • 16 Côte-Arsenault D, Mahlangu N. Impact of perinatal loss on the subsequent pregnancy and self: women's experiences. J Obstet Gynecol Neonatal Nurs 1999; 28 (03) 274-282
    CrossrefPubMedSearch in Google Scholar
  • 17 Campbell-Jackson L, Bezance J, Horsch A. “A renewed sense of purpose”: mothers' and fathers' experience of having a child following a recent stillbirth. BMC Pregnancy Childbirth 2014; 14: 423
    CrossrefPubMedSearch in Google Scholar
  • 18 Munro S, Janssen P, Corbett K, Wilcox E, Bansback N, Kornelsen J. Seeking control in the midst of uncertainty: women's experiences of choosing mode of birth after caesarean. Women Birth 2017; 30 (02) 129-136
    CrossrefPubMedSearch in Google Scholar
  • 19 D'Souza R, Shah PS, Sander B. Clinical decision analysis in perinatology. Acta Obstet Gynecol Scand 2018; 97 (04) 491-499
    CrossrefPubMedSearch in Google Scholar
  • 20 Ives A, Musiello T, Saunders C. The experience of pregnancy and early motherhood in women diagnosed with gestational breast cancer. Psychooncology 2012; 21 (07) 754-761
    CrossrefPubMedSearch in Google Scholar
  • 21 Harrison P. Psychosocial impact of a cancer diagnosis during pregnancy. Nurs Womens Health 2013; 17 (05) 437-442
    CrossrefPubMedSearch in Google Scholar
  • 22 McLean E, Renju J, Wamoyi J. et al. ‘I wanted to safeguard the baby’: a qualitative study to understand the experiences of Option B+ for pregnant women and the potential implications for ‘test-and-treat’ in four sub-Saharan African settings. Sex Transm Infect 2017; 93 (Suppl. 03) 1-5
    CrossrefPubMedSearch in Google Scholar
  • 23 Finnbogadóttir H, Dykes AK, Wann-Hansson C. Struggling to survive for the sake of the unborn baby: a grounded theory model of exposure to intimate partner violence during pregnancy. BMC Pregnancy Childbirth 2014; 14: 293
    CrossrefPubMedSearch in Google Scholar
  • 24 Tong A, Brown MA, Winkelmayer WC, Craig JC, Jesudason S. Perspectives on pregnancy in women with CKD: a semistructured interview study. Am J Kidney Dis 2015; 66 (06) 951-961
    CrossrefPubMedSearch in Google Scholar
  • 25 Patel JP, Auyeung V, Patel RK. et al. Women's views on and adherence to low-molecular-weight heparin therapy during pregnancy and the puerperium. J Thromb Haemost 2012; 10 (12) 2526-2534
    CrossrefPubMedSearch in Google Scholar
  • 26 Nippita TA, Porter M, Seeho SK, Morris JM, Roberts CL. Variation in clinical decision-making for induction of labour: a qualitative study. BMC Pregnancy Childbirth 2017; 17 (01) 317
    CrossrefPubMedSearch in Google Scholar
  • 27 D'Souza R, Bonasia K, Shah PS, Murphy KE, Sander B. Clinical decision analysis and model-based economic evaluation studies in perinatology: a systematic review. Acta Obstet Gynecol Scand 2019; 98 (08) 967-975
    CrossrefPubMedSearch in Google Scholar
  • 28 Vlemmix F, Warendorf JK, Rosman AN. et al. Decision aids to improve informed decision-making in pregnancy care: a systematic review. BJOG 2013; 120 (03) 257-266
    CrossrefPubMedSearch in Google Scholar