Perceived experience of patients with Systemic lupus erythematosus towards the announcement of the diagnosis: Series of 50 observations

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Published Mar 2, 2025
https://doi.org/10.62438/tunismed.v103i3.5250
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Vol. 103 No. 3 (2025): Tunis Med Mar 2025

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Zohra Aydi
Internal Medicine Department, Habib Thameur Hospital, University of Tunis El Manar, Faculty of Medicine, Tunis, Tunisia
Imène Rachdi
Internal Medicine Department, Habib Thameur Hospital, University of Tunis El Manar, Faculty of Medicine, Tunis, Tunisia
Rihem Boukhzar
Internal Medicine Department, Habib Thameur Hospital, University of Tunis El Manar, Faculty of Medicine, Tunis, Tunisia
Arij Soli
Internal Medicine Department, Habib Thameur Hospital, University of Tunis El Manar, Faculty of Medicine, Tunis, Tunisia
Mehdi Somai
Internal Medicine Department, Habib Thameur Hospital, University of Tunis El Manar, Faculty of Medicine, Tunis, Tunisia
Ibrahim Arbaoui
Internal Medicine Department, Habib Thameur Hospital, University of Tunis El Manar, Faculty of Medicine, Tunis, Tunisia
Besma Ben Dhaou
Internal Medicine Department, Habib Thameur Hospital, University of Tunis El Manar, Faculty of Medicine, Tunis, Tunisia
Fatma Daoud
Internal Medicine Department, Habib Thameur Hospital, University of Tunis El Manar, Faculty of Medicine, Tunis, Tunisia
Fatma Boussema
Internal Medicine Department, Habib Thameur Hospital, University of Tunis El Manar, Faculty of Medicine, Tunis, Tunisia

Abstract

Introduction :  The announcement of a chronic autoimmune disease is a delicate situation in our practice. The main objective of our work was to explore the felt experience of the lupus patient when faced with the announcement of the disease.


Patients and methods: Qualitative prospective study carried out from individual interviews with patients. suffering from SLE and followed in a department of internal medicine.


Results: We collected 60 patients (50 women and 10 men). The average age was 44.6 years. Thirty-five (65%) were married. The diagnosis was announced by an internist in 66% of cases. At the announcement of the diagnosis, 70% were hospitalized, alone (48%) and in the presence of a loved one (51%). The announcement took place in the doctor’s office in 40%. The duration of the announcement of the diagnosis was sufficient (56%). The doctor offered a second close consultation to complete the information (18%). The initial reaction was acceptance (54%), despair (31%), denial and refusal to disclose the diagnosis (3 cases). Around 36% thought that a consultation with a psychiatrist is necessary. The presence of a loved one is useful (45%). Patients suggested giving more information about the disease (58%), its progress (36%) and the treatment (5%). The analytical study showed that patients accept the diagnosis of SLE better when they are supported (P=0.026), married (P=0.01) and when the duration of the announcement is sufficient (P=0.045).


Conclusion: The announcement of the diagnosis of systemic lupus erythematosus must be made under appropriate..(abstract truncated at 250 words)

Keywords:

ethics, announcement, information, systemic lupus erythematosus

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References

  1. Romano H. The announcement of a serious diagnosis. Rev Med Interne. 2010 Sep;31(9):626-30
  2. UlAzim MA, Salam A, Abdullah SN. Experience of systemic lupus erythematosus in South-Western Bangladesh.Saudi J Kidney Dis Transpl. 2019 May-Jun;30(3):743-746.
  3. Amsden LB, Davidson PT, Fevrier HB, Goldfien R, Herrinton L J. Improving the quality of care and patient experience of care during the diagnosis of lupus: a qualitative study of primary care. Lupus. 2018 Jun;27(7):1088-1099.
  4. Ranjan P, Kumari A, Arora C. The value of communicating with patients in their first language. Expert Rev Pharmaco econ Outcomes Res. 2020 Dec;20(6):559-561.
  5. Honavar SG. Patient-physician relationship - Communication is the key.Indian J Ophthalmol. 2018 Nov;66(11):1527-1528.
  6. Haute Autorité de Santé. Délivrance de l’information à la personne sur son état de santé. Recommandation de bonne pratique. Juillet – 2012. Disponible : https://www.hassante.fr/portail/upload/docs/application/pdf/2012-06/argumentaire_delivrance_de_linformation_a_la_personne_sur_son_etat_de sante.pdf
  7. Organisation Mondiale de la Santé, art. 1, Constitution de 1946.
  8. Haute Autorité de Santé. Annoncer une mauvaise nouvelle. Février 2008. Disponible: http://www.hassante.fr/portail/upload/docs/application/pdf/2008-10/mauvaisenouvelle_vf.pdf
  9. Loi n° 2002-303 du 4 mars 2002 relative aux droits des malades et à la qualité du système de santé. Disponible : https://www.legifrance.gouv.fr/loda/id/JORFTEXT000000227015
  10. M Chouaibi. Droits du patient : étude comparée entre la France et la Tunisie [thèse : droit]. Aix Marseille ; 2016
  11. Loi organique n° 2016-22 du 24 mars 2016, relative au droit d’accès à l’information Disponible : https://igppp.tn/fr/Loi%20organique%20n%C2%B0%202016-22
  12. Décret n° 93-1155 du 17 mai 1993, portant code de déontologie médicale. (J.O. 40 des 28 mai et 1er juin 1993). Disponible : http://www.atds.org.tn/Decretdeontologiemedicale93.pdf
  13. Meeuwesen L, Schaap C, van der StaakC. Verbal analysis of doctor- patient communication.SocSci Med. 1991;32(10):1143-50.
  14. Marcoux I. Communication process in consultation of patients with incurable disease: a prospective study. Bull Cancer. 2012 Feb 1;99(2):137-46.
  15. Wojtys EM. Conflict of Interest. Sports Health. 2019 Sep/Oct; 11(5):395-396.
  16. Sutatano B, Singh-Grewal D, McNeil HP, et al. Experiences and perspectives of adults living with systemic lupus erythematosus: thematic synthesis of qualitative studies. Arthritis Care Res (Hoboken). 2013 Nov;65(11):1752-65.
  17. Lacroix A. Autour du vécu psychique des patients atteints d’une maladie chronique. Éducation Thérapeutique, 4ème éd. Issy-les-Moulineaux : Elsevier Masson ; 2009.p.33-38 October 2020.
  18. Hirji NK. Consent: A just evolution.Cont Lens Anterior Eye. 2020 Apr;43(2):95-97.
  19. Aagaard L, Kristensen K. Off-label and unlicensed prescribing in Europe: implications for patients’ informed consent and liability. Int J Clin Pharm. 2018 Jun;40(3):509-512.
  20. Gerber AU, Maio G. Ethics in medical every day practice: why and how?.TherUmsch. 2009 Aug;66(8):567.
  21. Dann MP. The nurse and ethics in a diagnosis of a serious disease. Rev Infirm. 2018 Apr;67(240):19-21.
  22. Villevielle C. Taking care of a patient after the announcement of a diagnosis of incurable disease. Rev Infirm. 1996 Jan;(1):39-41
  23. Chevrier F, M'bailara K .Guidelines for announcement device in mental disorders. Encephale. 2019 Nov;45(5):451-453.
  24. Couric P. Announcement of bad news and patient support. Rev Infirm. 2012 May;(181):23-4.
  25. Misery L, Chastaing M. Patient's information and announcement of a serious disease. Rev Med Interne. 2005 Dec;26(12):960-5.
  26. Buckman R, Cohen L, Kason Y. S’asseoir pour parler : l’art de communiquer de mauvaises nouvelles aux malades : guide du professionnel de santé. Paris: Masson; 2007.