When working with a newly diagnosed patient to determine a treatment plan, ensure the patient has a good understanding of the diagnosis, the options available and what the options entail.
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Explore This IssueMay 2016
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“It is important to help patients understand that there are choices, and that their decisions should be based on what matters to them,” says Susan M. Goodman, MD, rheumatologist, Hospital for Special Surgery, New York. “That doesn’t mean providing an encyclopedic list of medications, but rather discussing overarching approaches and goals and finding out what they think is important.”
Patients may want a fair amount of information to decide what is important in the context of the new diagnosis. Allow the patient to freely express their preferences for treatment and treatment goals, as well as any fears and concerns, such as medication side effects and lack of treatment efficacy.
The best treatment plan is one that is jointly developed between the doctor and the patient and allows the patient maximum control of their disease while minimizing treatment burden. “Balancing disease control against side effects while maintaining quality of life is the ultimate goal of a successful treatment regimen,” says Avis E. Ware, MD, FACR, FACP, professor of medicine, Division of Immunology, Allergy and Rheumatology, University of Cincinnati College of Medicine.
Eduardo Bonilla, MD, assistant professor, rheumatology, and Andras Perl, MD, PhD, professor and chief of rheumatology, both of SUNY Upstate Medical University, Syracuse, N.Y., have found that some patients want to be more involved in the decision-making process than others. Some patients say, “You’re the doctor; you decide.”
Regardless, it is essential that a rheumatologist be up to date with the different aspects of rheumatic diseases and their treatments, so they can provide the most accurate information regarding clinical manifestations, prognosis, treatment options and side effects.
The way in which a rheumatologist communicates is also very important, taking into account the patient’s education level. “Ultimately, it will be the patient’s decision whether to accept recommended treatment,” Dr. Bonilla says. “But it’s a rheumatologist’s obligation to make sure the patient can make an informed decision based on facts and evidence.”
By making sure the patient knows all of the possible clinical manifestations of the recently diagnosed disease, patients can report different signs and symptoms that they would not necessarily know are disease manifestations. For example, a patient with systemic lupus erythematosus (SLE) who develops chest pain associated with pleurisy may not relate the chest pain to SLE if he wasn’t told about the possible disease manifestation.
Deciphering ‘Risk’ Levels
A common misperception patients hold is that medications confer risk and not taking medications is safe. For example, rheumatoid arthritis (RA) patients may think that it’s a matter of learning to live with pain, but it’s important to help patients understand the potential systemic effects of untreated RA as well as the effects of RA on the joints, Dr. Goodman says.
In light of this, it is important that a rheumatologist emphasize the rapid advances in the understanding of the pathophysiology of many common rheumatic diseases. Optimization of disease control for many rheumatic diseases can now be done along with minimization of risk to the patient.
Risk aversion is often due to a patient’s lack of education regarding the nature of the underlying disease and the long-term implications of suboptimally treated disease vs. the real risk of medication side effects. “These conversations take time, but the rewards for the patient can be life changing,” Dr. Ware says. “Optimization of disease control is not taking a risk. In fact, not optimizing disease control is potentially the riskier behavior in the long run.”
Dr. Perl frequently encounters patients who have difficulty understanding that rheumatic diseases are chronic and may have serious consequences if left untreated. “Consequently, it is very common for patients to abandon treatment because they didn’t realize that they [would] have to take medication forever,” he says. “I tell patients that even though their newly diagnosed disease is manageable and that the goal is to live a normal life as much as possible by managing their disease, they need to take medications as prescribed and have regular doctor visits and monitoring via laboratory tests.”
Many patients arrive at their appointment with treatment goals in mind. Some want pain to resolve. Others want to be able to maintain employment until eligible for retirement. Others need to balance work with an active home life. After the patient expresses these goals, the rheumatologist can individualize a treatment plan that keeps these goals in mind while maximizing treatment benefit, Dr. Ware says.
For patients looking to determine and set their goals, having a clear communication strategy is key. Patients who accept treatment should be informed of the treatment length, the expected benefits and the possible side effects of treatment and how often they will need doctor visits and laboratory testing. “All of this is meant to ensure that they are able to adapt to the new routine in the best way,” Dr. Bonilla says. “For patients who refuse treatment, I inform them about the [potential] consequences of their decision.”
Dr. Goodman has found that the more time she spends on education up front, the easier long-term disease management will be. “With recently diagnosed patients, it helps to begin with simple goals, such as decreasing pain,” she says. “Decisions about long-term goals don’t have to be made at the first visit, but can be part of an ongoing dialogue. In some situations, decisions and goal setting are driven by specific priorities.” Pregnancy, for example, creates specific challenges and rewards. The discussion about certain medications, such as methotrexate, is very clear in this context (i.e., recommend stopping use prior to becoming pregnant to reduce the risks of miscarriage, birth defects and more); however, the use of biologics during pregnancy is more complicated and nuanced.
Dr. Goodman asks patients not to make drastic, permanent changes immediately after receiving a diagnosis of RA. “Most patients will respond well to therapy, and although they feel exhausted, are in pain and may feel anxious and vulnerable at the onset, they’ll be better able to assess their long-term goals regarding employment or social participation after beginning to respond to treatment,” she says. Often, short-term goals are to decrease pain and fatigue, with an explicit plan of considering long-term goals, such as beginning an exercise routine or smoking cessation, at the next visit.
Dr. Ware suggests forming a support system, such as bringing family members along to appointments and investing them in the treatment process. Patients embarking on treatment plans can take advantage of available resources, including the ACR and the Arthritis Foundation’s websites, which offer support and advice.
Dr. Perl says it’s important to emphasize chronicity and to set realistic expectations to adapt to morbidities that affect daily living activities. “We encourage patients to learn as much as possible about their disease and to actively follow their medical records through a secure website,” he says. “We advise patients to share these records with other healthcare providers to secure a better level of care that involves co-morbidities outside the realm of rheumatology.”
The Importance of Goal Setting
When a patient has reached a decision about their goals for therapy, the specifics of the treatment choice become easier, Dr. Goodman says. Such goals as being pain free or not feeling fatigue are easy to assimilate into the treat-to-target approach. Longer-term goals can be incorporated as the patient feels better.
“Patients quickly appreciate the benefit and value of their input in assessing treatment progress. Visits are frequent when therapy begins to ensure the patient is progressing and tolerating the medication. Once patients realize that the questionnaires they complete prior to their visits are important data points in determining their response to therapy, and that these data points are then incorporated into decisions about changing treatment, they usually appreciate the ability to follow their response to therapy as they move toward the goals they have helped establish,” Dr. Goodman says. “Because of this standard of care, the collaborative process between a physician and patient becomes more fluid.”
When dealing with chronic diseases, achieving the ultimate goal—maintaining a life that’s as normal as possible—can be a lifelong journey. “People and diseases evolve over time, and treatment regimens need to evolve and change as well,” Dr. Ware says. “Goals are reset as diseases worsen or improve. New treatments become available that may dramatically change a patient’s disease control and ability to function.” Continuing conversations and modifying goals are ongoing.
Karen Appold is a medical writer in Pennsylvania.
When discussing potential treatment options with pediatric patients and their guardians, Randy Q. Cron, MD, PhD, professor of pediatrics and medicine at the University of Alabama at Birmingham (UAB) and director of the Division of Pediatric Rheumatology at Children’s of Alabama, sometimes encounters families who are anti-Western medicine.
However, Dr. Cron has found that treating rheumatic conditions aggressively early on and then backing off therapy generally leads to lower doses and shorter duration of corticosteroid use in diseases that frequently require their use.
“Sometimes, families need additional time to accept the concept of better outcomes when chronic inflammatory disorders are treated early and aggressively,” Dr. Cron says. “I remind guardians that without treatment, a child may not be able to participate in certain athletic activities. There are also long-term consequences to undertreated chronic inflammation.”
Dr. Cron may compromise on a partial treatment plan (e.g., for polyarticular juvenile arthritis, weekly subcutaneous methotrexate rather than a combination of weekly methotrexate and a tumor necrosis factor inhibitor). “Usually, it doesn’t take long before the family realizes how much better off the child is with additional medicine or a more aggressive approach, so they are willing to try the full regimen in the short term.”