Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2020 Jun 12;4(2):rkaa021.
doi: 10.1093/rap/rkaa021. eCollection 2020.

Diagnosis and treatment of patients with antiphospholipid syndrome: a mixed-method evaluation of care in The Netherlands

Mirthe J Klein Haneveld  1 , Caro H C Lemmen  1 , Tammo E Brunekreef  1 , Marc Bijl  2 , A J Gerard Jansen  3 , Karina de Leeuw  4 , Julia Spierings  1 , Maarten Limper  1 ; ARCH Study Group
Affiliations

Diagnosis and treatment of patients with antiphospholipid syndrome: a mixed-method evaluation of care in The Netherlands

Mirthe J Klein Haneveld et al. Rheumatol Adv Pract. .

Erratum in

Abstract

Objectives: The aims were to gain insight into the care provided to patients with APS in The Netherlands and to identify areas for improvement from the perspective of both patients and medical specialists.

Methods: APS care was evaluated using qualitative and quantitative methods. Perspectives on APS care were explored using semi-structured interviews with medical specialists, patient focus groups and a cross-sectional, online patient survey. In order to assess current practice, medical records were reviewed retrospectively to collect data on clinical and laboratory manifestations and pharmacological treatment in six Dutch hospitals.

Results: Fourteen medical specialists were interviewed, 14 patients participated in the focus groups and 79 patients completed the survey. Medical records of 237 patients were reviewed. Medical record review showed that only one-third of patients were diagnosed with APS within 3 months after entering specialist care. The diagnostic approach and management varied between centres and specialists. Almost 10% of all patients and 7% of triple-positive patients with thrombotic APS were not receiving any anticoagulant treatment at the time of medical record review. Correspondingly, poor recognition and fragmentation of care were reported as the main problems by medical specialists. Additionally, patients reported the lack of accessible, reliable patient education, psychosocial support and trust in physicians as important points for improvement.

Conclusion: Delayed diagnosis, variability in management strategies and fragmentation of care were important limitations of APS care identified in this study. A remarkable 10% of patients did not receive any anticoagulant treatment.

Keywords: antiphospholipid syndrome; medical records; qualitative research; quality of care; unmet patient needs.

PubMed Disclaimer

Figures

<sc>Fig</sc>. 1
Fig. 1
Areas for improvement in APS care according to medical specialists and patients resulting from survey
<sc>Fig</sc>. 2
Fig. 2
Pharmacological management of patients included in medical record review Patients who received multiple medication types for management of APS count towards all received mentioned medications. DOAC: direct oral anticoagulant; LMWH: low-molecular-weight heparin; Other: amongst others, plasmapheresis, IVIG; Pregnancy treatment plan: documentation of plan to start treatment in case of pregnancy; VKA: vitamin K antagonist.
<sc>Fig</sc>. 3
Fig. 3
Recommendations for APS care in The Netherlands
See this image and copyright information in PMC

References

    1. Miyakis S, Lockshin MD, Atsumi T. et al. International consensus statement on an update of the classification criteria for definite antiphospholipid syndrome (APS). J Thromb Haemost 2006;4:295–306. - PubMed
    1. Limper M, de Leeuw K, Lely AT. et al. Diagnosing and treating antiphospholipid syndrome: a consensus paper. Neth J Med 2019;77:98–108. - PubMed
    1. Tektonidou MG, Andreoli L, Limper M. et al. EULAR recommendations for the management of antiphospholipid syndrome in adults. Ann Rheum Dis 2019;78:1296–304. - PMC - PubMed
    1. Limper M, Scirè CA, Talarico R. et al. Antiphospholipid syndrome: state of the art on clinical practice guidelines. RMD Open 2018;4:e000785. - PMC - PubMed
    1. Donnan PT, McDonald MJ.. Patients’ experiences of a diagnosis of Hughes’ syndrome. Clin Rheumatol 2009;28:1091–100. - PubMed

LinkOut - more resources