Original Articles
Vol. 4 No. 1 (2025)
“Living under the sword of Damocles”: a psychological support project for patients with immune thrombocytopenia and their caregivers
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All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher.
Received: 21 January 2025
Accepted: 18 February 2025
Accepted: 18 February 2025
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Immune thrombocytopenia (ITP) is an autoimmune disease that causes a drop in platelet count <100x109/L and it is associated to bleeding symptoms and psychological distress. It is a non-oncological hematological disease; however, research indicate that it significantly affects patients' psychological well-being, yet psychological support is often excluded from standard care. The “Living under the Sword of Damocles” project offers support to patients and caregivers while raising awareness among healthcare providers about ITP’s psychological impact. Developed by psychologists, hematologists, and patient advocates, the project provides a safe environment for discussing multiple issues and perspectives. It includes online and in-person group meetings and individual support, with the primary goal of helping participants recognize and manage ITP-related anxiety, offering new strategies to improve quality of life. Here we present the objectives of the project and the preliminary results achieved during the first year, with a psychological analysis of the three groups and possible future outcomes.
Here we discuss the objectives achieved during the first year of the project, providing a psychological analysis of the three groups and possible future outcomes.
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Citations
1. Terrell DR, Beebe LA, Vesely SK, et al. The incidence of immune thrombocytopenic purpura in children and adults: A critical review of published reports. Am J Hematol 2010;85:174-80. DOI: https://doi.org/10.1002/ajh.21616
2. Cooper N, Ghanima W. Immune thrombocytopenia. N Engl J Med 2019;381:945-55. DOI: https://doi.org/10.1056/NEJMcp1810479
3. Neunert C, Terrell DR, Arnold DM, et al. American Society of Hematology 2019 guidelines for immune thrombocytopenia. Blood Adv 2019;3:3829-66. DOI: https://doi.org/10.1182/bloodadvances.2019000966
4. Provan D, Arnold DM, Bussel JB, et al. Updated international consensus report on the investigation and management of primary immune thrombocytopenia. Blood Adv 2019;3:3780-817. DOI: https://doi.org/10.1182/bloodadvances.2019000812
5. Cooper N, Kruse A, Kruse C, et al. Immune thrombocytopenia (ITP) World Impact Survey (iWISh): Patient and physician perceptions of diagnosis, signs and symptoms, and treatment. Am J Hematol 2021;96:188-98. DOI: https://doi.org/10.1002/ajh.26045
6. Rousset L, Halioua B. Stress and psoriasis. Int J Dermatol 2018;57:1165-72. DOI: https://doi.org/10.1111/ijd.14032
7. Nelson VS, Jolink ATC, Amini SN, et al. Platelets in ITP: victims in charge of their own fate? Cells 2021;10:3235. DOI: https://doi.org/10.3390/cells10113235
8. Pryce CR, Fontana A. Depression in autoimmune diseases. Curr Top Behav Neurosci 2017;31:139-54. DOI: https://doi.org/10.1007/7854_2016_7
9. Terrell DR, Reese J, Branesky D, Lu K, Watson SI, Thachil J, et al. Depression in adult patients with primary immune thrombocytopenia. Am J Hematol 2016;91:E462-3. DOI: https://doi.org/10.1002/ajh.24484
10. Lucchesi A, Lovrencic B, McDonald V, et al. Treatment preferences towards thrombopoietin-receptor agonists for immune thrombocytopenia and experience of disease (TRAPeze): Italy cohort. Hematology 2023;28:2253069. DOI: https://doi.org/10.1080/16078454.2023.2253069
11. Bertolotti M, De Luca A, Tiberi M. Fatigue in rare diseases: A systematic review of the literature. Eur J Neurol 2021;28:1585-93.
12. Kruse A, Kruse C, Potthast N, et al. Mental health and treatment in patients with immune thrombocytopenia (ITP); Data from the Platelet Disorder Support Association (PDSA) Patient Registry. Blood 13 2019;134:2362. DOI: https://doi.org/10.1182/blood-2019-122278
13. Arnold R, Pirotte M. Communication in the medical encounter: A review of models and strategies. Med J Aust 2004;180:279-83.
14. Cassoni E. [Quando nasce un gruppo]. In: [Quaderni di Psicologia Analisi Transazionale e Scienze umane].[Book in Italian]. La Vita Felice; 2021. pp. 62-85.
15. Porges SW. La teoria Polivagale. Fondamenti neurofisiologici delle emozioni, dell’attaccamento, della comunicazione e dell’autoregolazione. Rome, Giovanni Fioriti Ed.; 2014.
16. Loomis M. Contracting for change. Transactional Anal J 1982;12:51-5. DOI: https://doi.org/10.1177/036215378201200107
17. Cozolino L. [Il cervello sociale. Neuroscienze delle relazioni umane].[Book in Italian]. Milan, Raffaello Cortina Ed.; 2008.
18. Piccinino G. [Le buone pratiche del counseling. L’apporto dell’analisi transazionale per promuovere il benessere nelle relazioni d’aiuto].[Version in Italian]. Milan, Franco Angeli Ed.; 2024.
19. Rollo M. [L’arte del counseling. Il consiglio, la guida, la supervisione].[Book in Italian]. Rome, Astrolabio-Ubaldini Ed.; 1993.
20. Calvo V. [Il colloquio di counseling. Tecniche di intervento nella relazione di aiuto].[Book in Italian]. Bologna, Il Mulino Ed.; 2007.
21. Ricci L. [Il processo di modellizzazione tra trainer e trainees].[in Italian]. 2013; Available from: www.counselingitalia.com
22. RAND. 36-Item Short Form Survey (SF-36) Scoring Instructions. Available from: https://www.rand.org/health-care/surveys_tools/mos/36-item-short-form/scoring.html
23. Giovannini D, Grassi S, Ricci L. [Unaltravisione: un modello supervisivo per il gruppo tra analisi transazionale e neurobiologia].[Article in Italian]. Riv Ital Anal Trans Metodol Psicoter 2017;36:2-21.
24. Capantini L, Giovannini D, Grassi S, Ricci L. [Un insegnamento incarnato. Il contributo delle neuroscienze tra intersoggettività e forme vitali].[Article in Italian]. Neopsiche – Rivista di Analisi Transazionale e Scienze Umane, 2012;12. Turin, Ananke Ed.
25. Siegel DJ. The developing mind: how relationships and the brain interact to shape who we are. New York, Guilford Press Inc.; 1999.
Supporting Agencies
Swedish Orphan Biovitrum (SOBI), DOCEAT Organization, Italy, AIPIT Organization, ItalyHow to Cite
1.
Auteri G, Ricci L, Vianelli N, Lovrencic B. “Living under the sword of Damocles”: a psychological support project for patients with immune thrombocytopenia and their caregivers. Bleeding Thromb Vascul Biol [Internet]. 2025 Mar. 13 [cited 2025 Nov. 7];4(1). Available from: https://www.btvb.org/btvb/article/view/161
Copyright (c) 2025 The Author(s)
This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License.
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