nach oben

Clinical Rheumatology

Erschienen in:

14.11.2014 | Original Article

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

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

Erschienen in: Clinical Rheumatology | Ausgabe 5/2016

Einloggen, um Zugang zu erhalten

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.

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 CrossRef

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 CrossRefPubMed

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):249–255CrossRef

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

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 CrossRefPubMed

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 CrossRefPubMed

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

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):394–401CrossRef

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 CrossRef

10.

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

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 CrossRefPubMedPubMedCentral

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 CrossRefPubMed

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 CrossRefPubMed

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):248–258CrossRefPubMed

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):531–535CrossRefPubMedPubMedCentral

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 CrossRefPubMed

17.

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

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 CrossRefPubMed

19.

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

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):875–882CrossRefPubMedPubMedCentral

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):79–85CrossRefPubMed

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 CrossRefPubMedPubMedCentral

23.

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

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 CrossRefPubMedPubMedCentral

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 CrossRefPubMed

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 CrossRefPubMedPubMedCentral

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 CrossRefPubMed

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):182–189CrossRefPubMed

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):219–226CrossRefPubMed

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):361–367CrossRefPubMed

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 CrossRefPubMed

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

35.

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

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):298–303CrossRefPubMedPubMedCentral

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):362–375CrossRefPubMed

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):721–732CrossRefPubMed

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 CrossRefPubMed

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 CrossRefPubMedPubMedCentral

41.

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

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 CrossRefPubMed

44.

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

45.

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

46.

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

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):681–692CrossRefPubMed

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 CrossRefPubMed

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 CrossRefPubMed

50.

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

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):317–326CrossRefPubMed

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 CrossRef

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):1015CrossRefPubMed

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):1145–1151CrossRefPubMedPubMedCentral

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 CrossRefPubMed

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):214–222CrossRefPubMed

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 CrossRefPubMed

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 CrossRefPubMed

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

Titel: Arthritis patients’ motives for (not) wanting to be involved in medical decision-making and the factors that hinder or promote patient involvement
verfasst von: Ingrid Nota
Constance H. C. Drossaert
Erik Taal
Mart A. F. J. van de Laar
Publikationsdatum: 14.11.2014
Verlag: Springer London
Erschienen in: Clinical Rheumatology / Ausgabe 5/2016
Print ISSN: 0770-3198
Elektronische ISSN: 1434-9949
DOI: https://doi.org/10.1007/s10067-014-2820-y

Leitlinien kompakt für die Innere Medizin

Mit medbee Pocketcards sicher entscheiden.

^{Seit 2022 gehört die medbee GmbH zum Springer Medizin Verlag}

Kostenlos registrieren

Neu im Fachgebiet Innere Medizin

Echinokokkose medikamentös behandeln oder operieren?

06.05.2024 DCK 2024 Kongressbericht

Die Therapie von Echinokokkosen sollte immer in spezialisierten Zentren erfolgen. Eine symptomlose Echinokokkose kann – egal ob von Hunde- oder Fuchsbandwurm ausgelöst – konservativ erfolgen. Wenn eine Op. nötig ist, kann es sinnvoll sein, vorher Zysten zu leeren und zu desinfizieren.

Umsetzung der POMGAT-Leitlinie läuft

03.05.2024 DCK 2024 Kongressbericht

Seit November 2023 gibt es evidenzbasierte Empfehlungen zum perioperativen Management bei gastrointestinalen Tumoren (POMGAT) auf S3-Niveau. Vieles wird schon entsprechend der Empfehlungen durchgeführt. Wo es im Alltag noch hapert, zeigt eine Umfrage in einem Klinikverbund.

Proximale Humerusfraktur: Auch 100-Jährige operieren?

01.05.2024 DCK 2024 Kongressbericht

Mit dem demographischen Wandel versorgt auch die Chirurgie immer mehr betagte Menschen. Von Entwicklungen wie Fast-Track können auch ältere Menschen profitieren und bei proximaler Humerusfraktur können selbst manche 100-Jährige noch sicher operiert werden.

Die „Zehn Gebote“ des Endokarditis-Managements

30.04.2024 Endokarditis Leitlinie kompakt

Worauf kommt es beim Management von Personen mit infektiöser Endokarditis an? Eine Kardiologin und ein Kardiologe fassen die zehn wichtigsten Punkte der neuen ESC-Leitlinie zusammen.

Update Innere Medizin

Bestellen Sie unseren Fach-Newsletter und bleiben Sie gut informiert.

Newsletter bestellen

Springer Medizin

Abstract

Bitte loggen Sie sich ein, um Zugang zu diesem Inhalt zu erhalten

Weitere Artikel der Ausgabe 5/2016

Genetic association study of systemic lupus erythematosus and disease subphenotypes in European populations

Association of MCP-1-2518A/G polymorphism with susceptibility to autoimmune diseases: a meta-analysis

The IgM isotype of anti-annexin A5 antibodies and multiple positivity of conventional antiphospholipid antibodies: increasing the number of clinical manifestations of primary antiphospholipid syndrome

Cardiac autonomic functions in children with familial Mediterranean fever

Efficacy and safety profile of anti-interleukin-1 treatment in Behçet’s disease: a multicenter retrospective study