Check out the previous blog on the series of learning nephrotic syndrome series 1 and 2 :
Living with Nephrotic Syndrome: A hypothetical Patient's Journey
Patient X was diagnosed with nephrotic syndrome at age 5; her family faced challenges in navigating through the complexities of medical jargon, treatment plans, and unforeseen relapses. Despite their best efforts, handling their child’s condition became an ongoing battle for them. This portrayal is a common experience for numerous patients and their families managing nephrotic syndrome, a disorder that disrupts lives with its unpredictable characteristics.
Challenges in Managing Nephrotic Syndrome
Patients suffering from nephrotic syndrome often experience poor responses to treatment due to the complex nature of the disease. A patient may progress through the disease while experiencing relapses and remission, making disease management challenging for the healthcare team. Additionally, the lack of guidelines on the management of nephrotic syndrome complicates treatment further.
Personalized Approaches in Treatment
A 2017 study, “Provider perspectives on treatment decision-making in nephrotic syndrome,” identified several learning needs, such as:
- Understanding nephrotic syndrome and its complications.
- Helping patients and parents of minors understand kidney disease, especially nephrotic syndrome, and its complexities, including medications and the risks/benefits associated with long-term or short-term treatments.
The study recommends personalized approaches to treating the disease. Healthcare professionals play a crucial role and should tailor information to the patient's age, the nature of the disease, and the patient's preferred way of learning. This can be done effectively by involving a team of professionals, including doctors, pharmacists, nurses, social workers, and nutritionists. Each member of the team brings unique skills and knowledge that are vital for patient care.
The Role of a Multidisciplinary Team
Example of How a Multidisciplinary Team Can Help:
-Pharmacists: They can encourage patients to stick to their medication plans, reassess dosages regularly, and monitor for side effects.
-Nurses: They can educate patients about vaccines and dietary changes, often with the help of nutritionists.
-Nutritionists: They can work along with other providers and patients to come up with a diet plan that is suitable for the patient's needs and preferences.
Patients suffering from kidney disease have many comorbid conditions associated, making the treatment challenging. The lack of guidance for conducting clinical trials for such complex diseases makes it further difficult. An international conference by KDIGO on “Challenges in the conduct of clinical trials in nephrology” conducted in 2017 addressed barriers to conducting clinical trials in patients suffering from kidney disease. Lack of adherence to treatment and disease complexity were some of the major problems in conducting clinical trials. Murphy et al. 2021 conducted a study to identify some issues faced by patient enrollment in clinical trials. According to this study, identified barriers to participation were data safety concerns, risk/side effects associated with study drugs and trials, provider involvement, and how the trial will benefit the patients.
Current Research and Trials
Currently, there are eight phase 3 trials (advanced stage of testing) and three phase 4 trials (post-marketing surveillance stage) worldwide focused on nephrotic syndrome. These trials are exploring different aspects of the disease, from how it works to how well treatments perform. The results of these trials could greatly improve how nephrotic syndrome is managed.
Due to the complexities of nephrotic syndrome, more research is needed. There is a current focus on the drug rituximab for treating minimal-change disease nephrotic syndrome, which is promising. However, more studies are needed to fully understand its potential. This call for more research should motivate healthcare professionals to continue advancing the field of nephrology.
Many studies have shown that rituximab is effective in treating minimal-change disease nephrotic syndrome that does not respond to corticosteroid treatments. A retrospective cohort study by Katsu et al. in 2019 found that rituximab significantly reduced the number of relapses in both children and adults. Another study by Xue et al. in 2020 found that rituximab led to complete remission in patients with minimal-change disease nephrotic syndrome, with few side effects. However, this study did not look at the long-term effects of rituximab, so more trials are needed to explore this further.
In conclusion, Nephrotic syndrome presents many challenges, but continued research and a multidisciplinary approach to care offer hope for better management and outcomes. Healthcare professionals must stay informed and work collaboratively to advance the field of nephrology, ultimately improving the lives of patients like Jane.
REFERENCES:
Hladunewich, M. A., Beanlands, H., Herreshoff, E., Troost, J. P., Maione, M., Trachtman, H., Poulton, C., Nachman, P., Modes, M. M., Hailperin, M., Pitter, R., & Gipson, D. S. (2017). Provider perspectives on treatment decision-making in nephrotic syndrome. Nephrology, dialysis, transplantation : official publication of the European Dialysis and Transplant Association - European Renal Association, 32(suppl_1), i106–i114. https://doi.org/10.1093/ndt/gfw309
Tapia, C. (2023, May 29). Nephrotic syndrome. StatPearls [Internet]. https://www.ncbi.nlm.nih.gov/books/NBK470444/
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