Date: Sunday, October 21, 2018
Session Title: 3S041 ACR/ARHP: Patient Perspectives Poster Session
Session Type: Patient Perspectives Poster Session
Session Time: 12:00PM-2:00PM
Background/Diagnosis: African-American female diagnosed with SLE, Lupus Nephritis, Discoid Lupus, and Raynaud’s Phenomenon in 2011. Symptoms included joint pain, edema in the ankles, malar rash, flank pain, frothy urine, and fatigue.
Treatment: Patient was treated with corticosteroids, immunosuppressants, anti-malarials, and topical steroidal ointments. The patient disclosed she wasn’t taking her medicine due to external pressure and stress. Remembering discussions about the patient’s interest in research and career goals, the doctor brought copies of recent medical journal articles on SLE to a consult. Emphasizing the importance of treatment adherence, the doctor did something that was unheard of, she asked about her school and research focus. Patient opened up, her scientific curiosity and passion shining through. They discussed the effects of each medicine. She continued this approach throughout her time leading the patient’s care. Incorporating the patient into the medical decision-making process, she continued printing materials relevant to the patient’s care and was a model for collaborative care. This was evident in allowing the patient to choose a medicine to stop when data showed the regimen she was on, was making no meaningful change.
Maintenance: While there is mounting emphasis placed on quality healthcare outcomes, what is often omitted from the conversation is how these results come about. These interactions with this physician were different from many others she had encountered. Asking about the patient’s research interests, showed the patient she wasn’t viewed as a set of illnesses. She showed she cared; whether she truly cared or instead used this as a means to an end, it helped change the patient’s behavior. The additional step of seeking feedback from the patient on the very medical decisions that impacted her life was paramount. It was no longer merely a physician-patient relationship. Although on different academic and career levels, the patient felt the physician viewed her as a colleague of sorts, even if one that required mentoring.
Quality of Life: The change in the doctor’s approach to care led to a change in the patient’s attitude toward her health and she became more open about her illness and joined local and online support groups. The patient currently mentors newly diagnosed patients, is an advocate for Lupus patients (often meeting with legislators to enact change), and co-manages a patient led healthcare community. The patient is still undergoing treatment for her Lupus and is receiving infusions of a biologic approved for Lupus treatment along with her other medications. She attributes the change in her attitude and lifestyle to the change in her physician’s approach. She recently relocated back to the town where that physician is stationed. The physician now leads her medical team. The patient has full trust in the capabilities of the team because of the leadership. The most important take away from this patient’s experience is to meet your patients where they are. Take an active interest in their whole lives and not just the symptoms you treat. Patient experience proves in overwhelming numbers, this will lead to better adherence and healthcare outcomes.
To cite this abstract in AMA style:Harrison C. The Road Less Traveled– Nontraditional Approaches to Increased Patient Adherence and Positive Outcomes [abstract]. Arthritis Rheumatol. 2018; 70 (suppl 10). https://acrabstracts.org/abstract/the-road-less-traveled-nontraditional-approaches-to-increased-patient-adherence-and-positive-outcomes/. Accessed May 31, 2020.
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ACR Meeting Abstracts - https://acrabstracts.org/abstract/the-road-less-traveled-nontraditional-approaches-to-increased-patient-adherence-and-positive-outcomes/