They request the humanization of care for chronic glomerulonephritis

Swelling of the limbs or the entire body, urine that changes and darkens, fatigue, pain, or even the appearance of high blood pressure. This clinical picture may correspond to the symptoms of one of the types of chronic glomerulonephritis (CGN), a group of little-known diseases that are one of the main causes of chronic kidney disease in Spain (CKD), only behind diabetes mellitus and high blood pressure.

The issue is that this is such a heterogeneous group of pathologies that there are patients who will experience symptoms and others who can only be diagnosed when anomalies in a routine urine analysis are detected, perhaps too late to prevent kidney damage.

Furthermore, there will be patients who, thanks to advances in understanding the disease mechanisms, will have targeted therapies available for their case, while others will have a worse prognosis and will end up living on dialysis and facing a future transplant. Even those whose disease began at an early age, between 6 and 15 years old, will live longer and with a more severe form of the disease, having to undergo more than one transplant throughout their lives. All the more challenging at such young ages.

Despite this, today, CGNs continue to be undervalued pathologies, with an estimated prevalence of 6.3 cases per million inhabitants in Spain. Thus, as the experience with this disease is so varied and the knowledge of specialists outside of Nephrology is still so limited, to give greater social and clinical visibility, the National Federation of Associations for the Fight against Kidney Diseases (Alcer) and Novartis, with the scientific endorsement of the Spanish Society of Nephrology (SEN), have presented the first Atlas of Chronic Glomerulonephritis in Spain.

This Atlas of CGN was developed from a survey conducted on 370 patients, 96 health professionals from 52 Spanish hospitals and had the collaboration of a broad multidisciplinary group of specialists, family members, caregivers, and patient organizations.

As stated by Fernando Caravaca-Fontán, a clinical nephrologist at Hospital 12 de Octubre in Madrid, “the goal is for the doctor to have a more holistic view and to take into account not only the aspects of the pathology itself but also more human aspects of the patient's experience”. However, as noted in the atlas, about 72% of the patients recognized having experienced emotional distress due to the disease. Especially in cases that lead to the need for dialysis or a transplant. Indeed, the atlas reveals data such as 56.3% reported an impact on their work life, or that 34% said it had influenced their decision to have children.

Late Diagnosis and Coordination with Primary Care

The Atlas of Chronic Glomerulonephritis in Spain emphasizes a key issue, which is diagnostic delay. Approximately 58% of patients believe their diagnosis was delayed, due to its silent symptoms, having consulted multiple health professionals, and delays in testing. Specifically, patients visited an average of 3.26 different health professionals before obtaining a diagnosis. Faced with this reality, Manuel Praga Terente, a nephrologist and emeritus professor at the Complutense University, insisted on the importance of this document in providing the patient's perspective and offering information that will be material for scientific publications, but above all in offering proposals for improvement. These proposals, among others, are the need to strengthen the coordination between Primary Care and Nephrology, ensure equitable access to specialists across the territory, and enhance the training of Emergency and Primary Care professionals. Additionally, it proposes adapting work and educational environments to the specific needs of these patients, ensuring the availability of specialized emotional support, and promoting a comprehensive biopsychosocial approach that considers the real complexity of the disease and its impact on all dimensions of life.