IDEAS home Printed from https://ideas.repec.org/a/gam/jijerp/v20y2023i5p4573-d1087751.html
   My bibliography  Save this article

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

Author

Listed:
  • 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
    as

    Download full text from publisher

    File URL: https://www.mdpi.com/1660-4601/20/5/4573/pdf
    Download Restriction: no

    File URL: https://www.mdpi.com/1660-4601/20/5/4573/
    Download Restriction: no
    ---><---

    References listed on IDEAS

    as
    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.
    Full references (including those not matched with items on IDEAS)

    Most related items

    These are the items that most often cite the same works as this one and are cited by the same works as this one.
    1. Matthew J. O’Neill & Tao Yang & Julie Laudeman & Maria E. Calandranis & M. Lorena Harvey & Joseph F. Solus & Dan M. Roden & Andrew M. Glazer, 2024. "ParSE-seq: a calibrated multiplexed assay to facilitate the clinical classification of putative splice-altering variants," Nature Communications, Nature, vol. 15(1), pages 1-15, December.
    2. Lama AlAbdi & Sateesh Maddirevula & Hanan E. Shamseldin & Ebtissal Khouj & Rana Helaby & Halima Hamid & Aisha Almulhim & Mais O. Hashem & Firdous Abdulwahab & Omar Abouyousef & Mashael Alqahtani & Nor, 2023. "Diagnostic implications of pitfalls in causal variant identification based on 4577 molecularly characterized families," Nature Communications, Nature, vol. 14(1), pages 1-19, December.
    3. Shim, Janet K. & Bentz, Michael & Vasquez, Emily & Jeske, Melanie & Saperstein, Aliya & Fullerton, Stephanie M. & Foti, Nicole & McMahon, Caitlin & Lee, Sandra Soo-Jin, 2022. "Strategies of inclusion: The tradeoffs of pursuing “baked in” diversity through place-based recruitment," Social Science & Medicine, Elsevier, vol. 306(C).
    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.
    5. Amartya Mukhopadhyay & Jennifer Sumner & Lieng Hsi Ling & Raphael Hao Chong Quek & Andre Teck Huat Tan & Gim Gee Teng & Santhosh Kumar Seetharaman & Satya Pavan Kumar Gollamudi & Dean Ho & Mehul Motan, 2022. "Personalised Dosing Using the CURATE.AI Algorithm: Protocol for a Feasibility Study in Patients with Hypertension and Type II Diabetes Mellitus," IJERPH, MDPI, vol. 19(15), pages 1-11, July.

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:gam:jijerp:v:20:y:2023:i:5:p:4573-:d:1087751. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    If CitEc recognized a bibliographic reference but did not link an item in RePEc to it, you can help with this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: MDPI Indexing Manager (email available below). General contact details of provider: https://www.mdpi.com .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.