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Psychosocial burden in young patients with primary anti-phospholipid syndrome: an Italian nationwide survey (The AQUEOUS study)


1, 2, 3, 4, 5, 6, 7, 8, 9, 10, 11, 12, 13, 14, 15, 16, 17, 18, 19, 20

 

  1. Experimental Laboratory of Immunological and Rheumatologic Researches, Immunology and Rheumatology Unit, San Luca Hospital, Istituto Auxologico Italiano, IRCCS, Milan, Italy. c.chighizola@auxologico.it
  2. Rheumatology and Clinical Immunology Unit, ASST Spedali Civili, Department of Clinical and Experimental Sciences, University of Brescia, Italy.
  3. Internal Medicine Unit, Department of Medicine, San Bortolo Hospital, Vicenza, and Rheumatology Unit, Department of Medicine-DIMED, University of Padova, Italy.
  4. Rheumatology Unit, Department of Biotechnological and Applied Clinical Science, School of Medicine, University of L'Aquila; Department of Medicine, ASL1 Avezzano-Sulmona-L'Aquila, L'Aquila, Italy.
  5. Center for Translational Research on Autoimmune and Allergic Disease-CAAD, Department of Translational Medicine, University of Eastern Piedmont, Novara, Italy.
  6. Department of Rheumatology, IRCCS Policlinico S. Matteo Foundation, University of Pavia, Italy.
  7. Rheumatology Unit, Department of Clinical Medicine and Surgery, University of Naples Federico II, Italy.
  8. Rheumatology Unit, Department of Medicine, Surgery and Neurosciences, Siena University Hospital, Italy.
  9. Centre of Research of Immunopathology and Rare Diseases - Coordinating Center of Piemonte and Valle d’Aosta Network for Rare Diseases, and SCDU Nephrology and Dialysis, University of Turin and S. Giovanni Bosco Hospital, Turin, Italy.
  10. Rheumatology Unit, D.S.S.4 Barletta, ASL BT, Barletta, Italy.
  11. Division of Clinical Rheumatology, Research Center for Adult and Paediatric Rheumatic Diseases, ASST G. Pini & CTO, Department of Clinical Sciences and Community Health, University of Milan, Italy.
  12. Experimental Laboratory of Immunological and Rheumatologic Researches, Immunology and Rheumatology Unit, San Luca Hospital, Istituto Auxologico Italiano, IRCCS, Milan, Italy.
  13. Centre of Research of Immunopathology and Rare Diseases - Coordinating Center of Piemonte and Valle d’Aosta Network for Rare Diseases, and SCDU Nephrology and Dialysis, University of Turin and S. Giovanni Bosco Hospital, Turin, Italy.
  14. Center for Translational Research on Autoimmune and Allergic Disease-CAAD, Department of Translational Medicine, University of Eastern Piedmont, Novara, Italy.
  15. Department of Rheumatology, IRCCS Policlinico S. Matteo Foundation, University of Pavia, Italy.
  16. Department of Rheumatology, IRCCS Policlinico S. Matteo Foundation, University of Pavia, Italy.
  17. Rheumatology Clinic, ASUFC, Santa Maria della Misericordia Hospital, Department of Medicine, University of Udine, Italy.
  18. Rheumatology Unit, Department of Medicine, University of Perugia, Italy.
  19. Division of Clinical Rheumatology, Research Center for Adult and Paediatric Rheumatic Diseases, ASST G. Pini & CTO, Department of Clinical Sciences and Community Health, University of Milan, Italy.
  20. Rheumatology and Clinical Immunology Unit, ASST Spedali Civili, Department of Clinical and Experimental Sciences, University of Brescia, Italy.

on behalf of SIRyoung

CER13551
2021 Vol.39, N°5
PI 0938, PF 0946
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PMID: 32940209 [PubMed]

Received: 11/05/2020
Accepted : 27/07/2020
In Press: 16/09/2020
Published: 31/08/2021

Abstract

OBJECTIVES:
The AQUEOUS (Anti-phospholipid syndrome: a QUEstionnaire for yOUng patientS) study aimed to assess how the diagnosis of primary anti-phospholipid syndrome (PAPS) affects the psychosocial status of young patients.
METHODS:
Subjects with PAPS aged 18–45 years were invited to compile an ad hoc designed questionnaire and the Short Form-12 to assess quality of life (QoL).
RESULTS:
Ninety-two patients (83.7% females) were recruited in 10 Italian centres. Vascular and obstetric manifestations were equally represented. Nearly half of the patients perceived the need for psychological support, 89.2% when considering women after pregnancy complications. Social activities and working efficiency were reduced in APS patients, also intimacy was threatened. In all cases, fatigue appeared to be the main determinant. PAPS affected family planning, due to fears of treatment side-effects, disease hereditariness, inability to care for the newborn child. Fertility appeared to be conserved: the median time to pregnancy was 2 months; assisted reproduction techniques were pursued by 5 women. Our survey documented significantly lower rates of hospitalisation and learning disabilities in 51 children born after APS diagnosis as compared to 48 children born before. PAPS patients displayed lower QoL in physical and, to a greater extent, mental scores compared to the general Italian population. Both components were significantly lower in women and in patients with fatigue.
CONCLUSIONS:
The AQUEOUS study assessed for the first time the unmet needs of young PAPS patients, enabling the development of a future “youth-focused” strategy to reduce disease burden.

Rheumatology Article