Background/Purpose: I was diagnosed with systemic lupus erythematosus (SLE) when I was 14, and then eventually with CNS lupus when I was 17. My doctors have found a treatment plan that works really well for me. Due to being diagnosed at such a young age, I have gone through many life transitions while dealing with my autoimmune diseases. These transitions include: advancing from pediatric to adult care, moving to college, medical insurance changes, and getting married. Life transitions can lead to health issues as a result of medical care team changes, insurance changes, and difficulties with access to medications and treatments. Changing doctors in the move from pediatric to adult care can introduce difficulties in ensuring that the new health care provider is willing to maintain that same treatment plan. Moving to college can also introduce challenges, especially if you are in a new state and need a local physician for your prescriptions and infusions. Getting married also led to medical insurance challenges, resulting in changing infusion companies and restarting the approval process. For many of these life transitions, I had a period of usually 3 to 6 months going without the treatments that worked for me, which always led to a flare. 

Intervention: To help prevent discontinuity of care and treatments during life transitions, it is important to plan ahead. Preparing for these changes can prevent some of the common, preventable issues that can occur. The healthcare system can be difficult to navigate, especially if you add in healthcare insurance. Ensuring that the patient learns about their health insurance and prepares for changes before they occur is important. This includes understanding the new coverage and beginning the process of finding covered healthcare providers before the change happens. When choosing where to attend college, planning ahead for treatment is crucial, especially if the college is in another state. Ultimately, I determined that it would not be possible to maintain my treatment plan as it was if I did this, so I chose a college in the same state. 

Maintenance: Once I was educated on how to navigate medical insurance and the healthcare system in general, it was much easier to prepare for and overcome challenges that arose when I went through another life transition and will be in the future as well. 

Quality of Life: Maintaining my treatment plan through these life transitions has allowed me to finish my bachelor’s and master’s degrees, walk across the stage at both graduations, and walk down the aisle at my wedding. These were things that were not initially possible, but through preparing for these life transitions and maintaining my treatment plan, they were able to happen. 

Takeaway: To ensure there is no disruption in the care and treatments of rheumatic patients during life transitions:

It is critical that the patient and their family understand their health insurance coverage, including which healthcare providers (HCPs), facilities, and services are covered.

HCPs should be aware of possible life changes and situations to expect ahead of time.

HCPs should know and be able to provide available resources such as handouts, links to resources, and information that can be added to the after-visit summary that would help patients navigate these challenges. 

Potential life transitions to consider are moving from pediatric to adult care, beginning college, moving to a different state or country, healthcare insurance changes, marriage, divorce, and death. 

Preparing a patient and their family for potential challenges from life transitions can result in better care, health outcomes, and quality of life. 

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/life-transitions-and-their-impact-on-patients/