Patient participation in decisions about disease modifying anti-rheumatic drugs: a cross-sectional survey

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    Abstract

    Background Involvement of patients in decision-making about medication is currently being advocated. This study examined (the concordance between) inflammatory arthritis patients’ preferred and perceived involvement in decision-making in general, and in four specific decisions about Disease-Modifying Anti-Rheumatic Drugs (DMARDs). Furthermore, this study examined how patients’ involvement is related to satisfaction about decision-making and which factors are related to preferred roles, perceived roles and concordance. Methods Using a cross-sectional survey, 894 patients diagnosed with Rheumatoid Arthritis, Psoriatic Arthritis or Ankylosing Spondylitis were sent a questionnaire which focused on medical decisions in general and on four specific decisions: (a) starting with a traditional DMARD; (b) starting to inject methotrexate; (c) starting a biological DMARD; and (d) decreasing or stopping a DMARD. For each decision preferred and perceived involvement in decision-making was assessed using the Control Preference Scale. Concordance was calculated by subtracting the scores for perceived role from scores for the preferred role. Furthermore, satisfaction with the decision process and socio-demographic, health-related, patient-related and physician-related variables were assessed. Results The response rate was 58%. For all decisions, most patients (59%-63%) preferred Shared Decision-Making (SDM). SDM was perceived frequently (26%-55%) and patients’ preferences were met in 54% of the respondents. Yet, in some specific decisions, 26% to 54% of patients would have liked more participation. Perceiving less participation then preferred was associated with less satisfaction with the decision-process, but perceiving more participation than preferred was not. Our results did not reveal any meaningful models to predict preferred or perceived participation in decision-making in general or with reference to specific decisions about DMARDs. Conclusions Most arthritis patients prefer to be involved in decisions about their medication and SDM is perceived frequently. Yet, in some specific decisions patient participation can be further improved. Patients especially prefer more participation in decision-making regarding starting a first traditional DMARD, which occurs most commonly in newly diagnosed patients. Whereas perceiving too little participation was associated with decreased satisfaction, perceiving too much participation was not. Therefore, rheumatologists should urge patients to participate in every medical decision
    Original languageEnglish
    Article number333
    Pages (from-to)333-
    Number of pages10
    JournalBMC musculoskeletal disorders
    Volume15
    Issue number333
    DOIs
    Publication statusPublished - 2014

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    Patient Participation
    Antirheumatic Agents
    Cross-Sectional Studies
    Decision Making
    Arthritis
    Psoriatic Arthritis
    Patient Preference
    Ankylosing Spondylitis
    Methotrexate
    Rheumatoid Arthritis
    Demography
    Physicians

    Keywords

    • IR-92328
    • METIS-306134

    Cite this

    @article{8e18a1f34d744c8c90b0d70cc12a554d,
    title = "Patient participation in decisions about disease modifying anti-rheumatic drugs: a cross-sectional survey",
    abstract = "Background Involvement of patients in decision-making about medication is currently being advocated. This study examined (the concordance between) inflammatory arthritis patients’ preferred and perceived involvement in decision-making in general, and in four specific decisions about Disease-Modifying Anti-Rheumatic Drugs (DMARDs). Furthermore, this study examined how patients’ involvement is related to satisfaction about decision-making and which factors are related to preferred roles, perceived roles and concordance. Methods Using a cross-sectional survey, 894 patients diagnosed with Rheumatoid Arthritis, Psoriatic Arthritis or Ankylosing Spondylitis were sent a questionnaire which focused on medical decisions in general and on four specific decisions: (a) starting with a traditional DMARD; (b) starting to inject methotrexate; (c) starting a biological DMARD; and (d) decreasing or stopping a DMARD. For each decision preferred and perceived involvement in decision-making was assessed using the Control Preference Scale. Concordance was calculated by subtracting the scores for perceived role from scores for the preferred role. Furthermore, satisfaction with the decision process and socio-demographic, health-related, patient-related and physician-related variables were assessed. Results The response rate was 58{\%}. For all decisions, most patients (59{\%}-63{\%}) preferred Shared Decision-Making (SDM). SDM was perceived frequently (26{\%}-55{\%}) and patients’ preferences were met in 54{\%} of the respondents. Yet, in some specific decisions, 26{\%} to 54{\%} of patients would have liked more participation. Perceiving less participation then preferred was associated with less satisfaction with the decision-process, but perceiving more participation than preferred was not. Our results did not reveal any meaningful models to predict preferred or perceived participation in decision-making in general or with reference to specific decisions about DMARDs. Conclusions Most arthritis patients prefer to be involved in decisions about their medication and SDM is perceived frequently. Yet, in some specific decisions patient participation can be further improved. Patients especially prefer more participation in decision-making regarding starting a first traditional DMARD, which occurs most commonly in newly diagnosed patients. Whereas perceiving too little participation was associated with decreased satisfaction, perceiving too much participation was not. Therefore, rheumatologists should urge patients to participate in every medical decision",
    keywords = "IR-92328, METIS-306134",
    author = "Ingrid Nota and Drossaert, {Constance H.C.} and Erik Taal and Vonkeman, {Harald Erwin} and {van de Laar}, {Mart A F J}",
    note = "Open access",
    year = "2014",
    doi = "10.1186/1471-2474-15-333",
    language = "English",
    volume = "15",
    pages = "333--",
    journal = "BMC musculoskeletal disorders",
    issn = "4171-2474",
    publisher = "BioMed Central Ltd.",
    number = "333",

    }

    TY - JOUR

    T1 - Patient participation in decisions about disease modifying anti-rheumatic drugs: a cross-sectional survey

    AU - Nota, Ingrid

    AU - Drossaert, Constance H.C.

    AU - Taal, Erik

    AU - Vonkeman, Harald Erwin

    AU - van de Laar, Mart A F J

    N1 - Open access

    PY - 2014

    Y1 - 2014

    N2 - Background Involvement of patients in decision-making about medication is currently being advocated. This study examined (the concordance between) inflammatory arthritis patients’ preferred and perceived involvement in decision-making in general, and in four specific decisions about Disease-Modifying Anti-Rheumatic Drugs (DMARDs). Furthermore, this study examined how patients’ involvement is related to satisfaction about decision-making and which factors are related to preferred roles, perceived roles and concordance. Methods Using a cross-sectional survey, 894 patients diagnosed with Rheumatoid Arthritis, Psoriatic Arthritis or Ankylosing Spondylitis were sent a questionnaire which focused on medical decisions in general and on four specific decisions: (a) starting with a traditional DMARD; (b) starting to inject methotrexate; (c) starting a biological DMARD; and (d) decreasing or stopping a DMARD. For each decision preferred and perceived involvement in decision-making was assessed using the Control Preference Scale. Concordance was calculated by subtracting the scores for perceived role from scores for the preferred role. Furthermore, satisfaction with the decision process and socio-demographic, health-related, patient-related and physician-related variables were assessed. Results The response rate was 58%. For all decisions, most patients (59%-63%) preferred Shared Decision-Making (SDM). SDM was perceived frequently (26%-55%) and patients’ preferences were met in 54% of the respondents. Yet, in some specific decisions, 26% to 54% of patients would have liked more participation. Perceiving less participation then preferred was associated with less satisfaction with the decision-process, but perceiving more participation than preferred was not. Our results did not reveal any meaningful models to predict preferred or perceived participation in decision-making in general or with reference to specific decisions about DMARDs. Conclusions Most arthritis patients prefer to be involved in decisions about their medication and SDM is perceived frequently. Yet, in some specific decisions patient participation can be further improved. Patients especially prefer more participation in decision-making regarding starting a first traditional DMARD, which occurs most commonly in newly diagnosed patients. Whereas perceiving too little participation was associated with decreased satisfaction, perceiving too much participation was not. Therefore, rheumatologists should urge patients to participate in every medical decision

    AB - Background Involvement of patients in decision-making about medication is currently being advocated. This study examined (the concordance between) inflammatory arthritis patients’ preferred and perceived involvement in decision-making in general, and in four specific decisions about Disease-Modifying Anti-Rheumatic Drugs (DMARDs). Furthermore, this study examined how patients’ involvement is related to satisfaction about decision-making and which factors are related to preferred roles, perceived roles and concordance. Methods Using a cross-sectional survey, 894 patients diagnosed with Rheumatoid Arthritis, Psoriatic Arthritis or Ankylosing Spondylitis were sent a questionnaire which focused on medical decisions in general and on four specific decisions: (a) starting with a traditional DMARD; (b) starting to inject methotrexate; (c) starting a biological DMARD; and (d) decreasing or stopping a DMARD. For each decision preferred and perceived involvement in decision-making was assessed using the Control Preference Scale. Concordance was calculated by subtracting the scores for perceived role from scores for the preferred role. Furthermore, satisfaction with the decision process and socio-demographic, health-related, patient-related and physician-related variables were assessed. Results The response rate was 58%. For all decisions, most patients (59%-63%) preferred Shared Decision-Making (SDM). SDM was perceived frequently (26%-55%) and patients’ preferences were met in 54% of the respondents. Yet, in some specific decisions, 26% to 54% of patients would have liked more participation. Perceiving less participation then preferred was associated with less satisfaction with the decision-process, but perceiving more participation than preferred was not. Our results did not reveal any meaningful models to predict preferred or perceived participation in decision-making in general or with reference to specific decisions about DMARDs. Conclusions Most arthritis patients prefer to be involved in decisions about their medication and SDM is perceived frequently. Yet, in some specific decisions patient participation can be further improved. Patients especially prefer more participation in decision-making regarding starting a first traditional DMARD, which occurs most commonly in newly diagnosed patients. Whereas perceiving too little participation was associated with decreased satisfaction, perceiving too much participation was not. Therefore, rheumatologists should urge patients to participate in every medical decision

    KW - IR-92328

    KW - METIS-306134

    U2 - 10.1186/1471-2474-15-333

    DO - 10.1186/1471-2474-15-333

    M3 - Article

    VL - 15

    SP - 333-

    JO - BMC musculoskeletal disorders

    JF - BMC musculoskeletal disorders

    SN - 4171-2474

    IS - 333

    M1 - 333

    ER -