IDEAS home Printed from https://ideas.repec.org/a/eee/hepoli/v105y2012i2p154-164.html
   My bibliography  Save this article

How do patients with rare diseases experience the medical encounter? Exploring role behavior and its impact on patient–physician interaction

Author

Listed:
  • Budych, Karolina
  • Helms, Thomas M.
  • Schultz, Carsten

Abstract

Empirical research shows that patients with severe illnesses prefer the physician to dominate decision processes and provide the information needed. However, in rare diseases, due to the low prevalence and the lack of expertise, the patient is forced to become knowledgeable about his own disease state. Objectives of this study were to describe the experiences of patient–physician interaction in rare diseases, to develop an empirically derived typology of interaction patterns and to explore the antecedents of these interaction patterns, with a special focus on role behavior. Building on these results, implications for health care policy are made.

Suggested Citation

  • Budych, Karolina & Helms, Thomas M. & Schultz, Carsten, 2012. "How do patients with rare diseases experience the medical encounter? Exploring role behavior and its impact on patient–physician interaction," Health Policy, Elsevier, vol. 105(2), pages 154-164.
    • Handle: RePEc:eee:hepoli:v:105:y:2012:i:2:p:154-164
    DOI: 10.1016/j.healthpol.2012.02.018
    as

    Download full text from publisher

    File URL: http://www.sciencedirect.com/science/article/pii/S0168851012000644
    Download Restriction: Full text for ScienceDirect subscribers only
    File URL: https://libkey.io/10.1016/j.healthpol.2012.02.018?utm_source=ideas
    LibKey link: if access is restricted and if your library uses this service, LibKey will redirect you to where you can use your library subscription to access this item
    ---><---

    As the access to this document is restricted, you may want to search for a different version of it.

    References listed on IDEAS

    as
    1. Johnstone, Megan-Jane & Kanitsaki, Olga, 2009. "Engaging patients as safety partners: Some considerations for ensuring a culturally and linguistically appropriate approach," Health Policy, Elsevier, vol. 90(1), pages 1-7, April.
    2. Peters, Sarah & Stanley, Ian & Rose, Michael & Salmon, Peter, 0. "Patients with medically unexplained symptoms: Sources of patients' authority and implications for demands on medical care," Social Science & Medicine, Elsevier, vol. 46(4-5), pages 559-565, February.
    3. Hack, Thomas F. & Degner, Lesley F. & Dyck, Dennis G., 1994. "Relationship between preferences for decisional control and illness information among women with breast cancer: A quantitative and qualitative analysis," Social Science & Medicine, Elsevier, vol. 39(2), pages 279-289, July.
    4. Arora, Neeraj K., 2003. "Interacting with cancer patients: the significance of physicians' communication behavior," Social Science & Medicine, Elsevier, vol. 57(5), pages 791-806, September.
    5. Charles, Cathy & Gafni, Amiram & Whelan, Tim, 1999. "Decision-making in the physician-patient encounter: revisiting the shared treatment decision-making model," Social Science & Medicine, Elsevier, vol. 49(5), pages 651-661, September.
    6. V.D. Divekar, 1972. "Communication," The Indian Economic & Social History Review, , vol. 9(2), pages 235-238, June.
    7. Rost, Kathryn & Carter, William & Inui, Thomas, 1989. "Introduction of information during the initial medical visit: Consequences for patient follow-through with physician recommendations for medication," Social Science & Medicine, Elsevier, vol. 28(4), pages 315-321, January.
    8. Sankar, Andrea, 1986. "Out of the clinic into the home: Control and patient-physician communication," Social Science & Medicine, Elsevier, vol. 22(9), pages 973-982, January.
    9. Charles, Cathy & Gafni, Amiram & Whelan, Tim, 1997. "Shared decision-making in the medical encounter: What does it mean? (or it takes at least two to tango)," Social Science & Medicine, Elsevier, vol. 44(5), pages 681-692, March.
    10. Hunt, Linda M. & Jordan, Brigitte & Irwin, Susan, 1989. "Views of what's wrong: Diagnosis and patients' concepts of illness," Social Science & Medicine, Elsevier, vol. 28(9), pages 945-956, January.
    Full references (including those not matched with items on IDEAS)

    Citations

    Citations are extracted by the CitEc Project, subscribe to its RSS feed for this item.
    as


    Cited by:

    1. Haghighat, Darius & Berro, Tala & Torrey Sosa, Lillian & Horowitz, Kayla & Brown-King, Bria & Zayhowski, Kimberly, 2023. "Intersex people's perspectives on affirming healthcare practices: A qualitative study," Social Science & Medicine, Elsevier, vol. 329(C).
    2. Eva Kesternich & Olaf Rank, 2022. "Beyond patient-sharing: Comparing physician- and patient-induced networks," Health Care Management Science, Springer, vol. 25(3), pages 498-514, September.
    3. Javier Güeita-Rodriguez & Pilar Famoso-Pérez & Jaime Salom-Moreno & Pilar Carrasco-Garrido & Jorge Pérez-Corrales & Domingo Palacios-Ceña, 2020. "Challenges Affecting Access to Health and Social Care Resources and Time Management among Parents of Children with Rett Syndrome: A Qualitative Case Study," IJERPH, MDPI, vol. 17(12), pages 1-16, June.
    4. Goeldner, Moritz & Herstatt, Cornelius, 2016. "Are patients and relatives the better innovators? The case of medical smartphone applications," Working Papers 91, Hamburg University of Technology (TUHH), Institute for Technology and Innovation Management.
    5. Nicole Boffin & Elfriede Swinnen & Johan Wens & Montse Urbina & Johan Van der Heyden & Viviane Van Casteren, 2018. "General Practice Care for Patients with Rare Diseases in Belgium. A Cross-Sectional Survey," IJERPH, MDPI, vol. 15(6), pages 1-9, June.

    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. Karnieli-Miller, Orit & Eisikovits, Zvi, 2009. "Physician as partner or salesman? Shared decision-making in real-time encounters," Social Science & Medicine, Elsevier, vol. 69(1), pages 1-8, July.
    2. Paul C. Schroy III & Karen Emmons & Ellen Peters & Julie T. Glick & Patricia A. Robinson & Maria A. Lydotes & Shamini Mylvanaman & Stephen Evans & Christine Chaisson & Michael Pignone & Marianne Prout, 2011. "The Impact of a Novel Computer-Based Decision Aid on Shared Decision Making for Colorectal Cancer Screening," Medical Decision Making, , vol. 31(1), pages 93-107, January.
    3. Coast, Joanna, 2018. "A history that goes hand in hand: Reflections on the development of health economics and the role played by Social Science & Medicine, 1967–2017," Social Science & Medicine, Elsevier, vol. 196(C), pages 227-232.
    4. Tate, Alexandra, 2020. "Invoking death: How oncologists discuss a deadly outcome," Social Science & Medicine, Elsevier, vol. 246(C).
    5. Wirtz, Veronika & Cribb, Alan & Barber, Nick, 2006. "Patient-doctor decision-making about treatment within the consultation--A critical analysis of models," Social Science & Medicine, Elsevier, vol. 62(1), pages 116-124, January.
    6. Shosh Shahrabani & Amiram Gafni & Uri Ben-Zion, 2008. "Low Flu Shot Rates Puzzle—Some Plausible Behavioral Explanations," The American Economist, Sage Publications, vol. 52(1), pages 66-72, March.
    7. Barnett, Erin R. & Boucher, Elizabeth A. & Neubacher, Katrin & Carpenter-Song, Elizabeth A., 2016. "Decision-making around psychotropic medications for children in foster care: Perspectives from foster parents," Children and Youth Services Review, Elsevier, vol. 70(C), pages 206-213.
    8. Peek, Monica E. & Odoms-Young, Angela & Quinn, Michael T. & Gorawara-Bhat, Rita & Wilson, Shannon C. & Chin, Marshall H., 2010. "Race and shared decision-making: Perspectives of African-Americans with diabetes," Social Science & Medicine, Elsevier, vol. 71(1), pages 1-9, July.
    9. Krystina Lewis & Dawn Stacey & Dan Matlock, 2014. "Making Decisions About Implantable Cardioverter-Defibrillators from Implantation to End of Life: An Integrative Review of Patients’ Perspectives," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 7(3), pages 243-260, September.
    10. May, Carl, 2013. "Agency and implementation: Understanding the embedding of healthcare innovations in practice," Social Science & Medicine, Elsevier, vol. 78(C), pages 26-33.
    11. Entwistle, Vikki & Williams, Brian & Skea, Zoe & MacLennan, Graeme & Bhattacharya, Siladitya, 2006. "Which surgical decisions should patients participate in and how? Reflections on women's recollections of discussions about variants of hysterectomy," Social Science & Medicine, Elsevier, vol. 62(2), pages 499-509, January.
    12. Glory Apantaku & Magda Aguiar & K. Julia Kaal & Patrick J. McDonald & Mary B. Connolly & Viorica Hrincu & Judy Illes & Mark Harrison, 2022. "Understanding Attributes that Influence Physician and Caregiver Decisions About Neurotechnology for Pediatric Drug-Resistant Epilepsy: A Formative Qualitative Study to Support the Development of a Dis," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 15(2), pages 219-232, March.
    13. Fatigante, Marilena & Heritage, John & Alby, Francesca & Zucchermaglio, Cristina, 2020. "Presenting treatment options in breast cancer consultations: Advice and consent in Italian medical care," Social Science & Medicine, Elsevier, vol. 266(C).
    14. Christoph Engel & Werner Gueth, 2018. "Modeling a satisficing judge," Rationality and Society, , vol. 30(2), pages 220-246, May.
    15. Mendick, Nicola & Young, Bridget & Holcombe, Christopher & Salmon, Peter, 2010. "The ethics of responsibility and ownership in decision-making about treatment for breast cancer: Triangulation of consultation with patient and surgeon perspectives," Social Science & Medicine, Elsevier, vol. 70(12), pages 1904-1911, June.
    16. Hardman, Doug & Geraghty, Adam W.A. & Lown, Mark & Bishop, Felicity L., 2020. "Subjunctive medicine: Enacting efficacy in general practice," Social Science & Medicine, Elsevier, vol. 245(C).
    17. O' Donnell, Máire & Monz, Brigitta & Hunskaar, Steinar, 2007. "General preferences for involvement in treatment decision making among European women with urinary incontinence," Social Science & Medicine, Elsevier, vol. 64(9), pages 1914-1924, May.
    18. Kirsten McCaffery & Les Irwig & Patrick Bossuyt, 2007. "Patient Decision Aids to Support Clinical Decision Making: Evaluating the Decision or the Outcomes of the Decision," Medical Decision Making, , vol. 27(5), pages 619-625, September.
    19. Moss, Jennifer L. & Reiter, Paul L. & Rimer, Barbara K. & Brewer, Noel T., 2016. "Collaborative patient-provider communication and uptake of adolescent vaccines," Social Science & Medicine, Elsevier, vol. 159(C), pages 100-107.
    20. Paton, Alexis & Armstrong, Natalie & Smith, Lucy & Lotto, Robyn, 2020. "Parents’ decision-making following diagnosis of a severe congenital anomaly in pregnancy: Practical, theoretical and ethical tensions," Social Science & Medicine, Elsevier, vol. 266(C).

    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:eee:hepoli:v:105:y:2012:i:2:p:154-164. 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: Catherine Liu or the person in charge (email available below). General contact details of provider: http://www.elsevier.com/locate/healthpol .

    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.