BOSTON — Rheumatologists need to do more to better understand the unique burdens and frustrations experienced by patients with multiple immune-mediated inflammatory diseases, according to Lilly Stairs, head of patient advocacy for Clara Health and a board member at the American Autoimmune Related Diseases Association.
In a keynote address to the 2018 Interdisciplinary Autoimmune Summit, Lilly – who was diagnosed with psoriasis, psoriatic arthritis and Crohn’s disease all before the age of 20 – said physicians should ask patients about administrative burdens that may prevent them from receiving the care they need, as well as encourage shared decision-making.
“I am not here to add more work to your already-full plate, preach at you or guilt trip you,” Lilly said. “I am here to illuminate the patient burdens you may be unaware of, offer tangible solutions and resources to help you better support your patients and understand patient perspective as it relates to shared decision-making.”
Lilly shared quotes and tweets from real patients regarding their frustrations with their diseases and care, including one individual who said multiple specialists have treated her body as separate “pieces,” based on their training, “and not as a whole system where everything affects everything else.”
According to Lilly, physicians can ease these burdens and frustrations by helping patients with their administrative needs. In addition, physicians should share resources beyond information on advocacy groups. Although such groups are important, Lilly suggested that physicians also provide patients with information on financial assistance programs offered by local hospitals, pharmaceutical assistance programs and online communities that are run by, and for, other individuals with their conditions.
Lilly also said one specialist should be chosen to “own” the patient’s care, and help coordinate appointments with multiple physicians on the same day, when possible. Physicians should also ask patients about any communication gaps they experience with their specialists, and how to improve coordination across the health care team.
According to Lilly, 75% of patients in the United States with an autoimmune disease are women. She noted that women are more likely to be treated less aggressively than men in their initial encounters with the health care system, until they “prove” they are as sick as male patients. This, she said, underscores the need for share decision-making between physicians and patients.
To better facilitate shared decision-making, physicians should ask their patients about their goals, and keep their conversations together open, rather than “shutting anything down,” Lilly said. In addition, physicians should provide multiple paths of care for the patient to choose from, and use empowering language such as “It’s your body” and “It’s ultimately your decision.” Lastly, physicians should remind patients that it is acceptable to seek a second opinion.
“So many patients are afraid because they don’t want to insult their doctor, or feel like they are going to hurt their relationship with their doctor if they go for a second opinion,” Lilly said. “However, if you give them that leeway, and they hear you say it is OK, they are not going to feel like you are holding it against them.” – byJason Laday
Disclosure: Stairs reports that she is head of patient advocacy for Clara Health.