A Lupus Medication Decision Aid Made Simple


Doctor and patients perceive the importance of lupus medications differently. In this article, we feature a UAB-derived decision aid that highlights key considerations.

Patients and providers discuss a patient’s condition and what medications might be most beneficial all of the time. They’re talking in the same room about the same topic, but in many instances, they’re not thinking about things from the same perspective.

New investigations, published in Arthritis Care & Research, revealed that, frequently, providers don’t have a good understanding of what’s most important to a patient when it comes to deciding what medicines to take. Improving patient education - particularly for lupus nephritis patients - can improve their clinical outcomes over time.

When discussing medication and treatment, the study found patient concerns can vary wildly from the economical to clinical aspects of therapies. Finding out what’s most important to them - in a process called shared decision making (SDM) - could shed light on how to best help them adhere to necessary medications long-term.

“I think with this study, we’ll perhaps be able to open up dialogue between patients and physicians. There are certain things a physician may not consider, such as cost and long-term effects of medication,” said Jasvinder A. Singh, M.D., a rheumatologist with the Birmingham Veterans Affairs Medical Center and the University of Alabama at Birmingham. “There can also be family issues that a patient really values. These are things that need to come up in conversation at the very beginning of decision making because they can contribute in a meaningful way to how patients think about treatment.”

Shared decision making has already proven effective with cardiovascular, end-of-life, osteoporosis and osteoarthritis care.

The Current Situation

Lupus nephritis, one of the most severe lupus manifestations, affects 30.9 lupus patients per 100,000, hitting women and non-whites most. If left untreated, it can lead to end-stage renal disease rapidly. However, existing research shows these patients historically don’t follow medication regimens well.

Dr. Singh’s group hypothesized that having the patients and providers engage in shared decision making would improve medication adherence over time. They engaged several stakeholder groups - patients, physicians, and non-physician healthcare professionals - to look at this decision making process from the patient’s perspective alone.

What’s Important to Patients

To ensure patients take their medications, providers must first know why taking the medicine is important to the patient and what concerns he or she might have. Researchers had lupus patients provide feedback on what makes it easier for them to decide to take prescribed medications. They received 98 responses and put them all on cards.

All stakeholders were asked to sort the cards based on what they thought would be most important to the patient. Participants divided the cards into 10 categories:

  • Hope for a normal/healthy life
  • Understanding the medication’s benefits and effectiveness
  • Desire to minimize side effects
  • Medication-related data
  • Medication effectiveness for “me”
  • Family focus
  • Confidence in physician
  • Medication research
  • Reassurance about medication
  • Medication economics

Overall, stakeholders rated a normal life and understanding the medication’s benefits as the most important. However, patients rated medication economics as more important that physicians and other medical professionals, as well as confidence in physician and a hope to minimize side effects.

The Impact

Study results revealed that both internal and external factors contribute to a patient’s decision to adhere to a prescribed medication regimen. It also showed that patients often find aspects important that providers don’t identify as significant.

For example, patients consider drug costs as a hurdle even though providers dismiss it because many lupus medications are now available in generic forms. Consequently, investigators determined, providers should discuss cost with their patients when laying out a medication regimen. Sharing information about how to identify, treat, and minimize the risk of side effect occurrence is also considered imperative.

These findings suggest providers need effective communication tools to help traverse the gap between what patients and providers consider to be important in the decision-making process. And, work is underway to make that a reality.

Dr. Singh’s group has already completed pilot tests for a lupus decision-aid guide, and a trial, funded by the Patient-Centered Outcome Research Institute, is assessing how effective it is. Other organizations, including the American College of Rheumatology, the Lupus Foundation of American, and the National Institute of Arthritis and Musculoskeletal and Skin Diseases are providing information about medication risks in lay language.

To facilitate conversations, physicians can also create checklists of themes they can check off to ensure they’ve discussed all concern during patient visits. Patients can also use a check list to generate questions.


This study had several strengths and limitations. In addition to enrolling patients and providers as relevant stakeholders from two geographically different locations (the West Coast and Deep South), the research also used state-of-art analysis for mapping. The patient population also oversampled minorities because they’re the most affected by lupus nephritis, have the poorest renal outcomes, three-times higher morality, and poor medication adherence.

However, the research does have limitations. The findings could be biased because some research team members were included in the classification process even though they didn’t participate in the first phase of research. The sample size was also relatively small, meaning the results might not be representative.

Despite these drawbacks, the researchers feel their results remain valid. All 98 cards were based on constructs and concepts previously identified by lupus patients, all stakeholders were asked to sort cards from the patient’s perspective, and no major differences between groups appeared.

To continue this work, researchers are currently engaged in assessing the effectiveness of a lupus nephritis decision-aid/guide based on the research published in this study.



Haiyan Qu, Richard M. Shewchuk, et al. "Mapping Perceptions of Lupus Medication Decision-Making Facilitators: The Importance of Patient Context," Arthritis Care & Research. Nov. 28, 2016.DOI: 10.1002/acr.22904

Gafni, Charles C., et al. “Self-reported use of shared decision-making among breast cancer specialist and perceived barriers and facilitators to implementing this approach,” Health Expectations, Nov. 12, 2004, DOI: 10.1111/j.1369-7625.2004.00299.x

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