Rheumatology Patients Seek Greater Voice in Treatment Decisions

Nota I, Drossaert CH, Taal E, et al. Patient participation in decisions about disease modifying anti-rheumatic drugs: a cross-sectional survey.BMC Musculoskelet Disord. (2014) Oct 4;15:333  [Epub ahead of print]

Patients report feeling left out of key  choices about disease-modifying anti-rheumatic drugs (DMARDs), despite a stated desire to share in decision-making with their rheumatologists,  according to the results of a Dutch survey.

The majority (72%) of 519 patients surveyed state they feel their doctor singlehandedly decided to start them on a traditional DMARDs, even though more than 60% state they prefer to participate in treatment decisions. 

Also, more than half report having too little say in some aspects of treatment, despite shared decision-making recommendations from the American College of Rheumatology (ACR) and other groups.

Based on the findings from their 65-item questionnaire, these authors suggest taking time to assure that you've provided sufficient information about treatment, and being sure to listen for what patients really want.

Newly-diagnosed patients may lack awareness of treatment choices and may not have enough time to process information during a physician visit, creating a barrier to shared decision-making, they explain.

The cross-sectional survey took place  at two hospitals in the Netherlands. Respondents included patientswith rheumatoid arthritis (RA), psoriatic arthritis, and ankylosing spondylitis. Most were women with RA (mean age of 56) interviewed 6 to 10 years after their initial diagnoses. Two-thirds (67.5%) report seeing  a rheumatologist two to four times a year, almost always (97%) the same doctor at each visit, for 7 years.

In other results, the authors report that only 17% of the respondents say they made the decision to start methotrexate injections, while less than a quarter chose on their own to decrease or stop the drug. 

The study also examines concordance between patient participation and patient satisfaction. Not surprisingly, patients who felt they had “too little” participation in most decisions were significantly less satisfied.

However, the authors acknowledge that some patients prefer to have a doctor make the decisions, and also urge physicians to inquire about this.

Making extra time and listening “may not only enhance patients’ satisfaction, it may also increase patients’ self efficacy in being adherent to medication,” they conclude.