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The Right to Ask, the Need to Answer—When Patients Meet Research: How to Cope with Time

Author

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  • Manuela Priolo

    (Unità di Genetica Medica, Grande Ospedale Metropolitano Bianchi-Melacrino-Morelli, 89124 Reggio Calabria, Italy)

  • Marco Tartaglia

    (Genetica Molecolare e Genomica Funzionale, Ospedale Pediatrico Bambino Gesù, IRCCS, 00146 Rome, Italy)

Abstract

Reaching a diagnosis and its communication are two of the most meaningful events in the physician–patient relationship. When facing a disease, most of the patients’ expectations rely on the hope that their clinicians would be able to understand the cause of their illness and eventually end it. Rare diseases are a peculiar subset of conditions in which the search for a diagnosis might reveal a long and painful journey scattered by doubts and requiring, in most cases, a long waiting time. For many individuals affected by a rare disease, turning to research might represent their last chance to obtain an answer to their questions. Time is the worst enemy, threatening to disrupt the fragile balance among affected individuals, their referring physicians, and researchers. It is consuming at all levels, draining economic, emotional, and social resources, and triggering unpredictable reactions in each stakeholder group. Managing waiting time is one of the most burdensome tasks for all the parties playing a role in the search for a diagnosis: the patients and their referring physicians urge to obtain a diagnosis in order to know the condition they are dealing with and establish proper management, respectively. On the other hand, researchers need to be objective and scientifically act to give a rigorous answer to their demands. While moving towards the same goal, patients, clinicians, and researchers might have different expectations and perceive the same waiting time as differently hard or tolerable. The lack of information on mutual needs and the absence of effective communication among the parties are the most common mechanisms of the failure of the therapeutic alliance that risk compromising the common goal of a proper diagnosis. In the landscape of modern medicine that goes faster and claims high standards of cure, rare diseases represent an exception where physicians and researchers should learn to cope with time in order to care for patients.

Suggested Citation

  • Manuela Priolo & Marco Tartaglia, 2023. "The Right to Ask, the Need to Answer—When Patients Meet Research: How to Cope with Time," IJERPH, MDPI, vol. 20(5), pages 1-10, March.
  • Handle: RePEc:gam:jijerp:v:20:y:2023:i:5:p:4573-:d:1087751
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    References listed on IDEAS

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    1. Eric D. Green & Chris Gunter & Leslie G. Biesecker & Valentina Francesco & Carla L. Easter & Elise A. Feingold & Adam L. Felsenfeld & David J. Kaufman & Elaine A. Ostrander & William J. Pavan & Adam M, 2020. "Strategic vision for improving human health at The Forefront of Genomics," Nature, Nature, vol. 586(7831), pages 683-692, October.
    2. Sabina Gainotti & Deborah Mascalzoni & Virginie Bros-Facer & Carlo Petrini & Giovanna Floridia & Marco Roos & Marco Salvatore & Domenica Taruscio, 2018. "Meeting Patients’ Right to the Correct Diagnosis: Ongoing International Initiatives on Undiagnosed Rare Diseases and Ethical and Social Issues," IJERPH, MDPI, vol. 15(10), pages 1-16, September.
    3. Juan Benito-Lozano & Greta Arias-Merino & Mario Gómez-Martínez & Alba Ancochea-Díaz & Aitor Aparicio-García & Manuel Posada de la Paz & Verónica Alonso-Ferreira, 2022. "Diagnostic Process in Rare Diseases: Determinants Associated with Diagnostic Delay," IJERPH, MDPI, vol. 19(11), pages 1-14, May.
    4. Cristina Gimenez-Lozano & Lucía Páramo-Rodríguez & Clara Cavero-Carbonell & Francisca Corpas-Burgos & Aurora López-Maside & Sandra Guardiola-Vilarroig & Oscar Zurriaga, 2022. "Rare Diseases: Needs and Impact for Patients and Families: A Cross-Sectional Study in the Valencian Region, Spain," IJERPH, MDPI, vol. 19(16), pages 1-16, August.
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