Guest Voice: A pharmacist weighs in on patient-centered care

Rita Martins is a dedicated clinical pharmacist with extensive experience in primary care and hospital settings. Passionate about patient-centered care, she empowers patients and caregivers through education, ensuring they are actively involved in their treatment journey. With a strong commitment to fostering engagement and delivering high-quality care, Rita strives to make a meaningful impact on patient health and well-being.

As a clinical pharmacist in a nephrology ward, I’ve seen firsthand the challenges faced by patients with ANCA-associated vasculitis (AAV). One patient who left a lasting impression on me was a young woman who initially presented with recurrent vomiting, headaches, reflux-related chest pain, puffy eyes, high blood pressure, and general discomfort. She also experienced fatigue and fevers, and had been diagnosed with acute kidney injury, hematuria (blood in the urine), and proteinuria (protein in the urine).

Following a kidney biopsy, she was diagnosed with MPO(+) ANCA vasculitis, specifically eosinophilic granulomatosis with polyangiitis. Her treatment included plasmapheresis and immunosuppressive therapy. Despite the overwhelming diagnosis, she remained positive and eager to learn about her condition.

However, she also faced significant personal challenges. Recently relocated, unemployed, and uncertain about her future, she worried about how AAV would impact her life. Managing her type 1 diabetes became more complex due to steroid treatment, requiring close collaboration with endocrinology specialists to adjust her insulin regimen. Her story highlights not just the medical complexities of AAV but also the emotional and social burdens it brings.

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What is ANCA-associated vasculitis?

AAV is an autoimmune disease in which the body’s immune system mistakenly attacks small blood vessels, often affecting the kidneys, lungs, and other organs. Symptoms can range from mild joint pain to severe organ dysfunction. Early diagnosis and treatment are crucial to preventing long-term complications.

I often explain AAV to patients using a simple analogy: Imagine your immune system as a security guard meant to protect you. In AAV, that guard mistakenly attacks your own house instead of intruders.

This comparison helps many patients understand the nature of the disease and the importance of immune-suppressing medications. Most importantly, I reassure them that this is not their fault, and it is manageable.

When I first meet a patient diagnosed with AAV, I know they are overwhelmed. The medical terminology and jargon, the list of new medications, the uncertainty of what lies ahead — it’s a lot to take in. My role goes beyond explaining how to take medications; it’s also about helping them understand why each part of their treatment matters and how they can integrate it into their daily lives.

One of the first things I discuss with patients is their treatment plan. Many express concerns about immunosuppressants like cyclophosphamide or rituximab, especially after hearing about the risk of infections. I reassure them that while these medications may seem intimidating, they act like a reset button for the immune system. By helping to stop the body from attacking itself, they provide a better chance at achieving long-term health.

Steroids are a common concern for patients, particularly regarding weight gain, mood changes, and potential complications like diabetes. I acknowledge these worries and provide practical guidance, emphasizing that while steroids are powerful, they are used with caution. Blood sugar levels are closely monitored, insulin is adjusted as needed, and bone health is supported with calcium and vitamin D. The goal is to strike the right balance, effectively controlling inflammation while minimizing side effects.

I encourage patients to track their symptoms by keeping a simple journal or using an app to note how they feel each day. This helps patients detect flare-ups early and identify patterns that can guide daily decisions.

Beyond medications, lifestyle changes are essential in managing AAV. Patients have more control than they may realize. Maintaining a consistent routine, staying active, eating a balanced diet, keeping up with vaccinations, and monitoring for early signs of infection can significantly impact their well-being.

Caregivers also bear a heavy burden, balancing emotional support with practical care needs. I always emphasize that they, too, need support, whether through patient groups, counseling, or simply setting aside time for self-care. One of the most rewarding parts of my job is bridging the gap between the hospital and the community, ensuring that both patients and caregivers have the resources they need to manage life with AAV.

Patients often feel lost when they leave the hospital. Therefore, it is important to ensure they have everything they need before discharge: medications in hand, a clear plan for follow-ups, and connections to support groups or counseling if needed. This offers reassurance to patients and families, making them feel supported and prepared for life beyond the hospital.

Through my experience, I’ve learned that education is one of the most powerful tools in managing AAV. When patients understand their disease and treatment, they feel more in control.

Living with AAV is challenging, but with the right medical care, education, and support, patients can lead fulfilling lives. My message to both patients and caregivers is this: You are not alone.

By understanding your disease, advocating for your health, and connecting with a supportive community, you can take control of your journey. AAV is a lifelong challenge, but together, through education and teamwork, we can help patients not just survive but thrive.

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Note: ANCA Vasculitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ANCA Vasculitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ANCA vasculitis.