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.
“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.