Healthcare reforms aim to change certain parts of the health system to improve quality of care, access, or financial sustainability. Traditionally, healthcare reform is understood as an action undertaken by a government at a national or local level. However, bottom-up changes can also lead to improvements in the health system. This paper describes the efforts of a coordinated multi-stakeholder advocacy group in Spain to promote a more cost-effective and patient-centred treatment for people receiving renal replacement therapy and assesses the outcomes of their advocacy for health system financing and patient satisfaction. It concludes that bottom-up initiatives do indeed have the power to change health policy and that policy makers should pay attention to their arguments.
People with kidney disease on hemodialysis spend 4 hours of their lives three times a week in hemodialysis units. Although the new concept of 21st century medicine gives special prominence to the opinion of patients and family members, the reality is that this is rarely considered when establishing the requirements that a dialysis center should meet.Objective: To know and compare the opinion and preferences of patients, family members and professionals regarding the design of a dialysis unit and the potential activities they believe should be carried out during the session in order to provide architects with real information for the construction of a dialysis center. .Methods: Anonymous and voluntary survey in electronic format addressed to patients, relatives and professionals belonging to the 18 hemodialysis centers of the renal foundation and to ALCER and its different delegations, in relation to leisure activities to be carried out in the dialysis center and preferred design of the treatment room. The results obtained between the patient-family group and the professionals were compared. Results: We received 331 responses, of which 215 were from patients and family members (65%) and 116 (35%) from professionals. The most represented category among professionals was nursing (53%), followed by assistants (24%) and physicians (12.9%). A higher proportion of patients (66%) preferred rooms in groups of 10-12 patients as opposed to professionals who preferred open-plan rooms (p<0.001). The options that showed the most differences between patients and professionals were chatting with colleagues and intimacy (options most voted by patients/families), versus performing group activities and visibility (professionals). Conclusions: The professionals' view of patients' needs does not always coincide with the patients' perception. The inclusion of the perspective of people with kidney disease continues to be a pending issue in which we must improve both patient organizations and professionals, and the opinion of professionals and patients must be included in the design of a dialysis unit and the activities to be developed in it
BackgroundChronic kidney disease (CKD) is a progressive and irreversible loss of renal function, due to different causes (diabetic nephropathy, hypertension, glomerulonephritis, hereditary renal failure, pharmacological poisoning, etc.) that lead to the kidneys losing their ability to eliminate waste, concentrate urine and preserve electrolytes in the blood, progressing towards the total loss of kidney function. At advanced stages, usual treatments are kidney transplantation, hemodialysis and peritoneal dialysis, all of which have a notable impact on daily life and the quality of life of patients.The Spanish society of nephrology (SEN) [1] reported a CKD prevalence of 1,234 patients per million population (pmp) in 2016, varying between 1,752 pmp in the age group between 45 and 64 years and 2,888 pmp in people over 75 years. Etiology is known to vary with age, being vascular causes more frequent in patients older than 75 years, those caused by diabetes in the 65-74 age group, polycystic disease in the 45-65 age group and hereditary origin in ages less than 45 years. The prevalence of renal replacement therapy is 521 pmp in hemodialysis, 67 pmp in peritoneal dialysis and 647 pmp in renal transplant. The percentage of mortality in 2016 was 8%, being the most frequent causes cardiovascular problems and associated infections. Median survival is 6.3 years, with a 5 years' survival percentage of 57% [2].Given the great impact of CKD on patient's wellbeing, it is important to bring forward indicators capable of quantifying the patient's vital state, towards an adequate therapeutic follow-up and, in particular, those reported by the patient. One of the patient reported outcome measures (PROM) most widely used as an indicator of the patient health status is Health Related Quality of Life (HRQoL), a measure that reflects the patient's subjective perception (without intervention of the clinical staff) in a repertoire of dimensions such as: emotional state, level of pain, physical functioning, social functioning and general perception of one's own health [3].HRQoL is a particularly important output due to its diagnostic capabilities, since it has been shown to be directly related to mortality, hospitalization and consumption of clinical resources [4]. HRQoL has also shown relationship with other specific disease indicators, adding
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