Constant fatigue, at-risk quality of life, mood slump, difficult work, and social isolation, despite high treatment adherence.
Milan, Nov. 23, 2023 – Chronic Kidney Disease (CKD) is a widespread disease that afflicts 8% to 16% of the world’s population, and especially diabetic and hypertensive people. One of the most common complications of Chronic Kidney Disease is anemia, which affects 1 in 5 patients and is also often its first symptom when the disease has not yet been diagnosed. In addition, anemia itself can occur in up to 90 percent of cases in dialyzed individuals with chronic kidney disease. The research DIANA – Dentro I racconti di ANemiA da Insufficienza Renale Cronica – conducted by ISTUD Area Health and Health with the unconditional contribution of Astellas, allowed to collect and analyze narratives telling the disease of anemia from chronic renal failure from three points of view: patients, family members, and care professionals. Thanks to the involvement of 8 active Nephrology Centers throughout Italy and the patient association ANED (Associazione Nazionale Emodializzati Dialisi e Trapianto – ONLUS), DIANA leads to greater knowledge and awareness of a disease that generates major impacts and tends to be underestimated, especially in the implications it has on the lives of the caregivers themselves.
The goal going forward is to use these results as a common starting point to continue toward improving the process of care and caregiving. This is to restore breath, fullness and relief to a health ecosystem whose essence is its symbiotic intersection of relationships and therapeutic treatments. The 74 narratives collected represent, therefore, the first result of the research; but the strength of the research was to listen to and unite multiple points of view on the experience of this condition, which allowed the following to emerge, among the most important aspects:
- People living with anemia from chronic renal failure often lead a difficult life, made burdensome even in the smallest daily gestures by constant fatigue and a decrease in their autonomy, to which they respond by strictly following medical instructions; this is in the hope of not getting worse, achieving a better psychophysical quality of life, regaining their autonomy and being able to fully rededicate themselves to their daily life and sociality, which is often limited by the disease itself.
- In addition, there is evidence of an important decrease in the quality of life of these individuals, due to lowered mood (reported more according to the caregivers’ point of view (47 percent), the difficulties that the disease brings on the world of work (where half of the working people report rearrangements or loss of the same), difficulty in accepting the disease (25 percent), and a decrease in social life (16 percent reported by patients and 29 percent reported by caregivers).
- Caregivers are also greatly affected by the consequences of their loved ones’ chronic renal failure anemia, being consumed by the hustle and bustle of their daily lives: “pulled” by work, family and caregiving they lose time to devote to themselves, their own plans and their social life. These people exhaust their energy, hoping for a marked improvement in their loved one’s quality of life, to return to their own lives.
- Caregivers, despite appearing to be generally liked, competent, and helpful, have a perception of “welcoming the sick person” that is misaligned with what is reported from other points of view. In fact, caregivers’ narratives focus heavily on therapeutic adherence and aspects regarding the mechanics of the disease.
- For all three points of view, kidney transplantation is seen as a solution to the issues related to the disease but there is not only this approach to managing the disease and it does not always turn out to be a definitive solution.
The listening operation carried out with DIANA brought into focus experiences of suffering and frustration, difficult confrontation with the chronicity of symptoms, nerve-wracking search for energy to be able to resume and live one’s daily life, sensitive modification of mood tone, and experiences of real disability.
Commented Maria Giulia Marini, Scientific and Innovation Director of the ISTUD Health and Healthcare Area, “The DIANA research has highlighted what “fatigue” means due to the years spent with chronic kidney disease: blocked life prospects, limited horizons of action and, therefore, a near absence of a future. Time is punctuated by tests, drugs and dialysis, while waiting for a kidney transplant. We can hope for scientific research on new and more effective treatments….”
Maura Ravera, Ph.D. from the Nephrology, Dialysis and Transplantation Clinic at San Martino Hospital in Genoa comments, “It is crucial to identify early and treat patients with anemia from chronic kidney disease in a timely manner to improve their quality of life and clinical outcomes.”
Lucia Del Vecchio, Doctor of Nephrology and Dialysis, Sant’Anna ASST Lariana Hospital, Como, comments, “The patient is often not alone with his disease; the caregiver is by his side and for years shares the emotional burden and practical tasks. Chronic kidney disease, and its complications, including anemia, is like a backpack: light at first, then increasingly full of stones.”
Giuseppe Vanacore, President ANED – Associazione Nazionale Emodializzati Dialisi e Trapianto – ONLUS – comments, “the quality of life of people affected by kidney disease and in the presence of the complication of anemia may not be an oxymoron. Provided that alongside the indispensable care, listening in medical practice and conscious participation of patients is also affirmed.”
Antonella Veneziano, Medical Director of Astellas, comments, “Astellas feels a strong social responsibility to support publishing projects of great educational value, which can help raise awareness about the condition of anemia associated with chronic kidney disease, giving voice to patients, caregivers and healthcare professionals.”
Out of this research came the book “DIANA – Inside Tales of ANemiA from Chronic Renal Insufficiency,” which will be distributed by Effedì Editions and will be available for free download at the following link: https://www.medicinanarrativa.eu/progetti/diana-dentro-i-racconti-di-%20anemia-da-insufficienza-renale-cronica.
The book, produced with the unconditional contribution of Astellas, contains the results of the research and a selection of the narratives collected and analyzed; the publication aims to make known the stories of people affected by this pathology and show what it means to deal with an experience that is often invisible and underestimated in its impact on the quality of life.