Skip to main content

Advertisement

SpringerLink
Log in

Arthritis patients’ motives for (not) wanting to be involved in medical decision-making and the factors that hinder or promote patient involvement

  • Original Article
  • Published:
Clinical Rheumatology Aims and scope Submit manuscript

Abstract

The aim of this study is to gain insight into arthritis patients’ motives for (not) wanting to be involved in medical decision-making (MDM) and the factors that hinder or promote patient involvement. In-depth semi-structured interviews were conducted with 29 patients suffering from Rheumatoid Arthritis (RA). Many patients perceived the questions about involvement in MDM as difficult, mostly because they were unaware of having a choice. Shared decision-making (SDM) was generally preferred, but the preferred level of involvement varied between and within individuals. Preference regarding involvement may vary according to the type of treatment and the severity of the complaints. A considerable group of respondents would have liked more participation than they had experienced in the past. Perceived barriers could be divided into doctor-related (e.g. a paternalistic attitude), patient-related (e.g. lack of knowledge) and context-related (e.g. too little time to decide) factors. This study demonstrates the complexity of predicting patients’ preferences regarding involvement in MDM: most RA patients prefer SDM, but their preference may vary according to the situation they are in and the extent to which they experience barriers in getting more involved. Unawareness of having a choice is still a major barrier for patient participation. The attending physician seems to have an important role as facilitator in enhancing patient participation by raising awareness and offering options, but implementing SDM is a shared responsibility; all parties need to be involved and educated.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

References

  1. Brosseau L, Lineker S, Bell M, Wells G, Casimiro L, Egan M et al (2012) People getting a grip on arthritis: a knowledge transfer strategy to empower patients with rheumatoid arthritis and osteoarthritis. Health Educ J 71(3):255–267. doi:10.1177/0017896910387317

    Article  Google Scholar 

  2. Kiesler DJ, Auerbach SM (2006) Optimal matches of patient preferences for information, decision-making and interpersonal behavior: evidence, models and interventions. Patient Educ Couns 61(3):319–341. doi:10.1016/j.pec.2005.08.002

    Article  PubMed  Google Scholar 

  3. Neame R, Hammond A, Deighton C (2005) Need for information and for involvement in decision making among patients with rheumatoid arthritis: a questionnaire survey. Arthrit Care Res 53(2):249–255

    Article  Google Scholar 

  4. O’Connor AM, Stacey D, Légaré F, Santesso N (2004) Knowledge translation for patients: methods to support patients participation in decision making about preference sensitive treatment options in rheumatology. In: Tugwell P, Shea B, Boers M, Brooks P, Simon LS, Strand V et al (eds) Evidence-based rheumatology. BMJ Publishing Group, London

    Google Scholar 

  5. Say R, Murtagh M, Thomson R (2006) Patients’ preference for involvement in medical decision making: a narrative review. Patient Educ Couns 60(2):102–114. doi:10.1016/j.pec.2005.02.003

    Article  PubMed  Google Scholar 

  6. Whitney SN, Holmes-Rovner M, Brody H, Schneider C, McCullough LB, Volk RJ et al (2008) Beyond shared decision making: an expanded typology of medical decisions. Med Decis Making 28(5):699–705. doi:10.1177/0272989x08318465

    Article  PubMed  Google Scholar 

  7. Kassirer JP (1994) Incorporating patients’ preferences into medical decisions. N Engl J Med 330(26):1895–1896

    Article  CAS  PubMed  Google Scholar 

  8. Kjeken I, Dagfinrud H, Mowinckel P, Uhlig T, Kvien TK, Finset A (2006) Rheumatology care: involvement in medical decisions, received information, satisfaction with care, and unmet health care needs in patients with rheumatoid arthritis and ankylosing spondylitis. Arthrit Care Res 55(3):394–401

    Article  Google Scholar 

  9. Ward MM, Sundaramurthy S, Lotstein D, Bush TM, Neuwelt CM, Street RL (2003) Participatory patient–physician communication and morbidity in patients with systemic lupus erythematosus. Arthrit Care Res 49(6):810–818. doi:10.1002/art.11467

    Article  Google Scholar 

  10. Coulter A (1997) Partnerships with patients: the pros and cons of shared clinical decision-making. J Health Serv Res Policy 2(2):112–121

    CAS  PubMed  Google Scholar 

  11. Little P, Everitt H, Williamson I, Warner G, Moore M, Gould C et al (2001) Observational study of effect of patient centredness and positive approach on outcomes of general practice consultations. BMJ 323(7318):908–911. doi:10.1136/bmj.323.7318.908

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  12. Schildmann J, Grunke M, Kalden JR, Vollmann J (2008) Information and participation in decision-making about treatment: a qualitative study of the perceptions and preferences of patients with rheumatoid arthritis. J Med Ethics 34(11):775–779. doi:10.1136/jme.2007.023705

    Article  CAS  PubMed  Google Scholar 

  13. Strull WM, Lo B, Charles G (1984) Do patients want to participate in medical decision making? JAMA 252(21):2990–2994. doi:10.1001/jama.1984.03350210038026

    Article  CAS  PubMed  Google Scholar 

  14. Deber RB, Kraetschmer N, Urowitz S, Sharpe N (2007) Do people want to be autonomous patients? Preferred roles in treatment decision-making in several patient populations. Health Expect 10(3):248–258

    Article  PubMed  Google Scholar 

  15. Levinson W (2005) Not all patients want to participate in decision making. A national study of public preferences. J Gen Intern Med 20(6):531–535

    Article  PubMed  PubMed Central  Google Scholar 

  16. Deber RB, Kraetschmer N, Irvine J (1996) What role do patients wish to play in treatment decision making? Arch Intern Med 156(13):1414–1420. doi:10.1001/archinte.1996.00440120070006

    Article  CAS  PubMed  Google Scholar 

  17. Funk LM (2004) Who wants to be involved? Decision-making preferences among residents of long-term care facilities. Can J Aging 23(1):47–58

    Article  PubMed  Google Scholar 

  18. Janz NK, Wren PA, Copeland LA, Lowery JC, Goldfarb SL, Wilkins EG (2004) Patient-physician concordance: preferences, perceptions, and factors influencing the breast cancer surgical decision. J Clin Oncol 22(15):3091–3098. doi:10.1200/jco.2004.09.069

    Article  PubMed  Google Scholar 

  19. Murray E, Pollack L, White M, Lo B (2006) Clinical decision-making: patients’ preferences and experiences. Patient Educ Couns 65(2):189–196

    Article  PubMed  Google Scholar 

  20. Pieterse AH, Baas-Thijssen MCM, Marijnen CAM, Stiggelbout AM (2008) Clinician and cancer patient views on patient participation in treatment decision-making: a quantitative and qualitative exploration. Br J Cancer 99(6):875–882

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  21. Vogel BA, Bengel J, Helmes AW (2008) Information and decision making: patients’ needs and experiences in the course of breast cancer treatment. Patient Educ Couns 71(1):79–85

    Article  PubMed  Google Scholar 

  22. Caress AL, Beaver K, Luker K, Campbell M, Woodcock A (2005) Involvement in treatment decisions: what do adults with asthma want and what do they get? Results of a cross sectional survey. Thorax 60(3):199–205. doi:10.1136/thx.2004.029041

    Article  PubMed  PubMed Central  Google Scholar 

  23. Fraenkel L, McGraw S (2007) Participation in medical decision making: the patients perspective. Med Decis Making 27:533–538. doi:10.1177/0272989x07306784

    Article  PubMed  Google Scholar 

  24. Fraenkel L, McGraw S (2007) What are the essential elements to enable patient participation in medical decision making? J Gen Intern Med 22(5):614–619. doi:10.1007/s11606-007-0149-9

    Article  PubMed  PubMed Central  Google Scholar 

  25. Joseph-Williams N, Elwyn G, Edwards A (2014) Knowledge is not power for patients: a systematic review and thematic synthesis of patient-reported barriers and facilitators to shared decision making. Patient Educ Couns 94(3):291–309. doi:10.1016/j.pec.2013.10.031

    Article  PubMed  Google Scholar 

  26. Politi MC, Dizon DS, Frosch DL, Kuzemchak MD, Stiggelbout AM (2013) Importance of clarifying patients’ desired role in shared decision making to match their level of engagement with their preferences. BMJ. 347:f7066. http://www.ncbi.nlm.nih.gov/pubmed/24297974

  27. Chewning B, Bylund CL, Shah B, Arora NK, Gueguen JA, Makoul G (2012) Patient preferences for shared decisions: a systematic review. Patient Educ Couns 86(1):9–18. doi:10.1016/j.pec.2011.02.004

    Article  PubMed  PubMed Central  Google Scholar 

  28. Dillard AJ, Couper MP, Zikmund-Fisher BJ (2010) Perceived risk of cancer and patient reports of participation in decisions about screening: The DECISIONS Study. Med Decis Making 30(5 suppl):96S–105S. doi:10.1177/0272989x10377660

    Article  PubMed  Google Scholar 

  29. Vogel BA, Helmes AW, Hasenburg A (2008) Concordance between patients’ desired and actual decision-making roles in breast cancer care. Psycho-Oncology 17(2):182–189

    Article  PubMed  Google Scholar 

  30. Joosten EAG, DeFuentes-Merillas L, de Weert GH, Sensky T, van der Staak CPF, de Jong CAJ (2008) Systematic review of the effects of shared decision-making on patient satisfaction, treatment adherence and health status. Psychother Psychosom 77(4):219–226

    Article  CAS  PubMed  Google Scholar 

  31. Garfield S, Smith F, Francis SA, Chalmers C (2007) Can patients’ preferences for involvement in decision-making regarding the use of medicines be predicted? Patient Educ Couns 66(3):361–367

    Article  CAS  PubMed  Google Scholar 

  32. Degner LF, Kristjanson LJ, Bowman D, Sloan JA, Carriere KC, O’Neil J et al (1997) Information needs and decisional preferences in women with breast cancer. JAMA 277(18):1485–1492. doi:10.1001/jama.1997.03540420081039

    Article  CAS  PubMed  Google Scholar 

  33. Patton M (2002) Qualitative research and evaluation methods. 3rd ed. Thousand Oaks: SAGE Publications, Inc.

  34. Sainio C, Lauri S, Eriksson E (2001) Cancer patients’ views and experiences of participation in care and decision making. Nurs Ethics 8(2):X-113

    Google Scholar 

  35. Henderson S (2002) Influences on patient participation and decision-making in care. Professional Nurse (Lond Engl) 17(9):521–525

    Google Scholar 

  36. Belcher VN, Fried TR, Agostini JV, Tinetti ME (2006) Views of older adults on patient participation in medication-related decision making. J Gen Intern Med 21(4):298–303

    Article  PubMed  PubMed Central  Google Scholar 

  37. Entwistle V, Prior M, Skea ZC, Francis JJ (2008) Involvement in treatment decision-making: its meaning to people with diabetes and implications for conceptualisation. Soc Sci Med 66(2):362–375

    Article  PubMed  Google Scholar 

  38. Entwistle VA, Skea ZC, O’Donnell MT (2001) Decisions about treatment: interpretations of two measures of control by women having a hysterectomy. Soc Sci Med 53(6):721–732

    Article  CAS  PubMed  Google Scholar 

  39. Davey HM, Lim J, Butow PN, Barratt AL, Redman S (2004) Women’s preferences for and views on decision-making for diagnostic tests. Soc Sci Med 58(9):1699–1707. doi:10.1016/s0277-9536(03)00339-3

    Article  PubMed  Google Scholar 

  40. Henrikson NB, Davison BJ, Berry DL (2011) Measuring decisional control preferences in men newly diagnosed with prostate cancer. J Psychosoc Oncol 29(6):606–618. doi:10.1080/07347332.2011.615383

    Article  PubMed  PubMed Central  Google Scholar 

  41. Degner LF, Sloan JA (1992) Decision making during serious illness: what role do patients really want to play? J Clin Epidemiol 45(9):941–950

    Article  CAS  PubMed  Google Scholar 

  42. Alderson P, Madden M, Oakley A, Wilkins R, Lee J (1994) Women’s views of breast cancer treatment and research. http://research.ioe.ac.uk/portal/en/publications/womens-views-of-breast-cancer-treatment-andresearch%280c74a31a-aa38-4c34-a901-6f5109525d82%29/export.html

  43. Gattellari M, Ward JE (2005) Measuring men’s preferences for involvement in medical care: getting the question right. J Eval Clin Pract 11(3):237–246. doi:10.1111/j.1365-2753.2005.00530.x

    Article  PubMed  Google Scholar 

  44. Arora NK, McHorney CA (2000) Patient preferences for medical decision making: who really wants to participate? Med Care 38(3):335–341

    Article  CAS  PubMed  Google Scholar 

  45. Ende J, Kazis L, Ash A, Moskowitz M (1989) Measuring patients’ desire for autonomy. J Gen Intern Med 4(1):23–30

    Article  CAS  PubMed  Google Scholar 

  46. Beisecker AE, Beisecker TD (1990) Patient information-seeking behaviors when communicating with doctors. Med Care 28(1):19–28

    Article  CAS  PubMed  Google Scholar 

  47. Charles C, Gafni A, Whelan T (1997) Shared decision-making in the medical encounter: what does it mean?(or it takes at least two to tango). Soc Sci Med 44(5):681–692

    Article  CAS  PubMed  Google Scholar 

  48. Charles C, Gafni A, Whelan T (1999) Decision-making in the physician–patient encounter: revisiting the shared treatment decision-making model. Soc Sci Med 49(5):651–661. doi:10.1016/S0277-9536(99)00145-8

    Article  CAS  PubMed  Google Scholar 

  49. Edwards A, Elwyn G (2006) Inside the black box of shared decision making: distinguishing between the process of involvement and who makes the decision. Health Expect 9(4):307–320. doi:10.1111/j.1369-7625.2006.00401.x

    Article  PubMed  Google Scholar 

  50. Bhavnani V, Fisher B (2010) Patient factors in the implementation of decision aids in general practice: a qualitative study. Health Expect 13(1):45–54

    Article  PubMed  Google Scholar 

  51. Kraetschmer N, Sharpe N, Urowitz S, Deber RB (2004) How does trust affect patient preferences for participation in decision‐making? Health Expect 7(4):317–326

    Article  PubMed  Google Scholar 

  52. Berrios-rivera JP, Street RL, Garcia Popa-lisseanu MG, Kallen MA, Richardson MN, Janssen NM et al (2006) Trust in physicians and elements of the medical interaction in patients with rheumatoid arthritis and systemic lupus erythematosus. Arthrit Care Res 55(3):385–393. doi:10.1002/art.21988

    Article  Google Scholar 

  53. Keating NL, Gandhi TK, Orav EJ, Bates DW, Ayanian JZ (2004) Patient characteristics and experiences associated with trust in specialist physicians. Arch Intern Med 164(9):1015

    Article  PubMed  Google Scholar 

  54. Tariman J, Berry D, Cochrane B, Doorenbos A, Schepp K (2010) Preferred and actual participation roles during health care decision making in persons with cancer: a systematic review. Ann Oncol 21(6):1145–1151

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  55. Blanch-Hartigan D, Ruben MA (2013) Training clinicians to accurately perceive their patients: current state and future directions. Patient Educ Couns 92(3):328–336. doi:10.1016/j.pec.2013.02.010

    Article  PubMed  Google Scholar 

  56. Salt E, Peden A (2011) The complexity of the treatment: the decision-making process among women with rheumatoid arthritis. Qual Health Res 21(2):214–222

    Article  PubMed  Google Scholar 

  57. Legare F, Politi MC, Drolet R, Desroches S, Stacey D, Bekker H (2012) Training health professionals in shared decision-making: an international environmental scan. Patient Educ Couns 88(2):159–169. doi:10.1016/j.pec.2012.01.002

    Article  PubMed  Google Scholar 

  58. Koerner M, Wirtz M, Michaelis M, Ehrhardt H, Steger A-K, Zerpies E et al (2014) A multicentre cluster-randomized controlled study to evaluate a train-the-trainer programme for implementing internal and external participation in medical rehabilitation. Clin Rehabil 28(1):20–35. doi:10.1177/0269215513494874

    Article  PubMed  Google Scholar 

  59. Stacey D, Légaré F, Col NF, Bennett CL, Barry MJ, Eden KB et al (2014) Decision aids for people facing health treatment or screening decisions. Status and date: Edited (no change to conclusions), published in. (1)

  60. Ministerie van Volksgezondheid We S (2011) Landelijke nota gezondheidsbeleid: Gezondheid dichtbij. In: Ministerie van Volksgezondheid WeS, editor. Den Haag

Download references

Acknowledgments

The authors thank the rheumatologists for recruiting the patients and respondents for participating in this study. This study was financially supported by the Dutch Arthritis Foundation.

Ethical standards

The study did not need approval of the ethical review board according to the Dutch Medical Research Involving Human Subjects Act (WMO); only (non-intervention) studies with a high burden for patients have to be reviewed. All persons gave their informed consent prior to their inclusion in the study. The authors confirm that all patient/personal identifiers have been removed or disguised, so the person(s) described are not identifiable and cannot be identified through the details of the story.

Financial supporter

The Dutch Arthritis Association.

Conflict of interest

None.

Author information

Authors and Affiliations

  1. Department of Psychology, Health and Technology, University of Twente, PO Box 217, 7500AE, Enschede, The Netherlands

    Ingrid Nota, Constance H. C. Drossaert, Erik Taal & Mart A. F. J. van de Laar

  2. Department of Rheumatology and Clinical Immunology, Medisch Spectrum Twente, PO Box 50 000, 7500 KA, Enschede, The Netherlands

    Mart A. F. J. van de Laar

Authors
  1. Ingrid Nota
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Constance H. C. Drossaert
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Erik Taal
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Mart A. F. J. van de Laar
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Ingrid Nota.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Nota, I., Drossaert, C.H.C., Taal, E. et al. Arthritis patients’ motives for (not) wanting to be involved in medical decision-making and the factors that hinder or promote patient involvement. Clin Rheumatol 35, 1225–1235 (2016). https://doi.org/10.1007/s10067-014-2820-y

Download citation

  • Received:

  • Revised:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10067-014-2820-y

Keywords

Search

Navigation