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: In 2007 I was diagnosed with Lupus which has since then wreaked havoc on my kidneys, lungs, GI tract, peripheral nervous system, to name a few. Additionally, as is usually the case with Lupus, chronic fatigue and joint pain had a devastating effect on my everyday life. The overall goal for my rheumatologist and I was to prevent further organ damage, and tackle the 2 recurrent symptoms that threatened to affect my quality of life: Fatigue and joint pain. Pinpointing the ways these affected the goals I had for my life took time and communication. It is undeniable that patient’s relationship with this/her doctor/health team may positively influence the patient’s health and life under the right conditions.
Treatment: My 11 years as a chronic patient have seen many mid-to-long-terms interactions with doctors. My partnership with my rheumatologist continues to positively impact my life every day. Through our visits and communications, my rheumatologist made it a practice to ask about my life outside of Lupus. Aside from my care, she took an active interest in me as a whole person, strongly encouraged my advocacy, and prompted me to join support groups. Her support of my career goals and interests in research fostered a relationship of trust, inspiring me to take a more active participation in my care. She also validated my vision that my patient/advocacy experience would inform the work I would do.
Maintenance: The outcome of this new perspective is that I’ve taken charge of my health with a new approach, from consistency with my treatment plan to paying greater attention to my diet and exercise; This more comprehensive approach also included better managing my energy and stress levels. The culture among my support group peers is one of encouragement and of accountability. Support from my doctor and the support she encouraged me to receive from my peers push me to pursue my goals, and to speak up for people like us, to fight for better quality of life for people with Lupus. At patient education events, I spend time talking with doctors about doctor-patient relationships and adherence and how doctors can help.
Quality of Life: Chronic patients will greatly benefit from such support and encouragement from their doctors. Patients whose life goals/interests are taken into consideration develop a rapport of trust with their doctor which in turns increases treatment and lifestyle compliance. My doctor’s active pursuit of a collaborative team with her patient led to a transformation in the way I do my part. I encourage doctors to consider establishing a personal connection with their patients (common interest, hobby, etc) and asking patients about what is important to them. Additionally, doctors should encourage support groups and self advocacy. This all leads to better treatment compliance, and a more engaged, healthier, and happier patient.
To cite this abstract in AMA style:Felix C. Communication, Support, and Advocacy Lead to Improved Health and Quality of Life [abstract]. Arthritis Rheumatol. 2018; 70 (suppl 10). https://acrabstracts.org/abstract/communication-support-and-advocacy-lead-to-improved-health-and-quality-of-life/. Accessed October 27, 2020.
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ACR Meeting Abstracts - https://acrabstracts.org/abstract/communication-support-and-advocacy-lead-to-improved-health-and-quality-of-life/