Unidades de Enfermedad Renal Crónica Avanzada en España: una encuesta nacional sobre los estándares de estructura, recursos, resultados y seguridad del paciente / Advanced Chronic Kidney Disease Units in Spain: a national survey on standards of structure, resources, results and patient safety

ANTECEDENTES Y OBJETIVO: Recientemente, se han desarrollado en España las Unidades de Enfermedad Renal Crónica Avanzada (UERCA) con el objetivo de ofrecer una mayor calidad de vida a los pacientes con ERCA, mejorar su supervivencia y disminuir la morbilidad en esta fase de la enfermedad. Al día de hoy, hay poca evidencia en la literatura española e internacional con respecto a la estructura y cómo conseguir estos objetivos en las UERCA. Desde el grupo de trabajo ERCA de la Sociedad Española de Nefrología (SEN) se impulsa este proyecto para mejorar la atención a los pacientes ERCA a través de la definición de estándares de calidad para el funcionamiento de las UERCA. MATERIAL Y MÉTODOS: Se conformó una propuesta inicial de estándares de calidad sobre el funcionamiento de las UERCA a través de la consulta de principales fuentes de referencias y el asesoramiento de un grupo de trabajo de expertos a través de reuniones presenciales y no presenciales. A partir de esta propuesta inicial de estándares, se diseñó y envío una encuesta vía correo electrónico a 121 especialistas de nefrología y profesionales de enfermería con experiencia en UERCA españolas para conocer entre otros, la idoneidad de cada estándar, es decir, su obligatoriedad o recomendación como estándar. Se permitió acceso a la encuesta entre el 16 de julio de 2018, hasta el 26 de septiembre de 2018. RESULTADOS: Participaron un total de 95 (78,5%) profesionales de los 121 que fueron invitados a participar. De éstos, 80 fueron especialistas en nefrología y 15 profesionales de enfermería, obteniéndose una variada representación de profesionales de la geografía española. Tras analizar las opiniones de estos participantes, los estándares quedaron definidos a un total de 68, 37 de ellos (54,4%) obligatorios y 31 de ellos (45,5%) recomendables. Además, se observó que el volumen de pacientes atendidos en las UERCA se sitúa usualmente por encima de los 100 pacientes, y que el criterio de derivación por regla general está por debajo de 25-29 mL/min/1,73 m2 de filtración glomerular. CONCLUSIONES: Este trabajo constituye una primera propuesta de estándares de calidad para el funcionamiento de una UERCA en España. La definición de estos estándares ha permitido establecer las bases para la estandarización de la organización de las UERCA, y trabajar posteriormente en la configuración de un manual de estándares para la acreditación de estas Unidades

BACKGROUND AND OBJECTIVE: Recently, the Advanced Chronic Kidney Disease Units (UERCA, in Spanish) have been developed in Spain to offer a better quality of life to patients with advanced chronic kidney disease (ACKD), improving their survival and reducing morbidity in this phase of the disease. Nowadays, there is not much evidence in the Spanish and international literature regarding the structure and how to achieve these objectives in the UERCA. From the ERCA working group of the Spanish Society of Nephrology (SEN), this project is promoted to improve care for ERCA patients through the definition of quality standards for the operation of the UERCA. MATERIAL AND METHODS: An initial proposal for quality standards concerning the operation of the UERCA was configured through consultation with the main sources of references and the advice of an expert working group through face-to-face and telematic meetings. Base on this initial proposal of standards, a survey was conducted and sent it via email to 121 nephrology specialist and nursing professionals with experience in Spanish UERCA to find out, among others, the suitability of each standards, that is, its mandatory nature or recommendation as standards. The access to the survey was allowed between July 16th, 2018, until September 26th, 2018. RESULTS: A total of 95 (78.5%) professionals participated out of the 121 who were invited to participate. Of these, 80 of the participants were nephrology specialists and 15 nursing professionals, obtaining a varied representation of professionals from the Spanish geography. After analyzing the opinions of these participants, the standards were defined to a total of 68, 37 of them (54.4%) mandatory and 31 of them (45.5%) recommended. Besides, it was observed that the volume of patients attended in the UERCA is usually above 100 patients, and the referral criteria is generally below 25-29 mL/min/1.73 m2 of glomerular filtration. CONCLUSIONS: This work constitutes a first proposal of quality standards for the operation of UERCA in Spain. The definition of these standards has made it possible to establish the bases for the standardization of the organization of UERCA, and to subsequently work on the configuration of a standards manual for the accreditation of ERCA Units

The IMCO scheme as a tool in developing team-based treatment for people with multiple sclerosis.

BACKGROUND: The Danish Multiple Sclerosis Society (a patient organization) has initiated a research-based bridge-building and integrative treatment project to take place from 2004 to 2010 at a specialized MS hospital. The background for initiating the project was an increasing use of alternative treatment documented among persons with multiple sclerosis (PwMS). From PwMS there has been an increasing demand upon The Danish Multiple Sclerosis Society to initiate the project. OBJECTIVE: The overall purpose of the project is to examine whether collaboration between 5 conventional and 5 alternative practitioners may optimize treatment results for people who have multiple sclerosis (MS). The specific aim of this paper is to present tools used in developing collaboration between the conventional and alternative practitioners. MATERIALS AND METHODS: Two main tools in developing collaboration between the practitioners are described: (1) the planning and conduction of 4 practitioner-researcher seminars in the prephase of the project before recruiting patients with MS; and (2) the IMCO scheme (which is an abbreviation of Intervention, Mechanism, Context, and Outcomes). This tool was developed and used at practitioner-researcher seminars to make visible the different practitioners' treatment models and the patient-related treatment courses. RESULTS: Examples of IMCO schemes filled in by the medical doctor and the classical homeopath illustrate significant differences in interventions, assumptions concerning effect mechanisms, and awareness of contexts facilitating and inhibiting the intervention to generate the outcomes expected and obtained. CONCLUSIONS: The IMCO schemes have been an important tool in developing the team-based treatment approaches and to facilitate self-reflection on the professional role as a health care provider. We assume that the IMCO scheme will be of real value in the development of effective treatment based on collaboration between conventional and alternative practitioners.

Effectiveness of a multidisciplinary kidney disease clinic in achieving treatment guideline targets.

BACKGROUND: We have demonstrated previously that at referral most chronic kidney disease (CKD) patients have suboptimal metabolic and hypertension control. Although several studies suggest that CKD clinics improve patient outcome, in fact there are minimal published data describing the actual effect of such clinics on these parameters. METHODS: We performed a historical prospective review of a cohort of 340 CKD patients referred to our multidsciplinary clinic in 1998 or 1999, with estimated creatinine clearance (CCr) <60 ml/min. Data regarding blood pressure (BP) control, metabolic/anaemia parameters, medications, access planning and dialysis starts were collected. RESULTS: The number of patients followed was 234, 144, 100 and 70 at years 1-4 of follow-up, respectively. Twenty-five percent of the patients were diabetic, and 25% were suspected to have ischaemic nephropathy; mean age was 67+/-15 years. Although phosphate control improved from referral, below a CCr of 30 ml/min, 27% of visits showed hyperphosphataemia. Thirty-one percent of patients with CCr <15 ml/min had haemoglobin <100 g/l at follow-up despite the availability of erythropoietin. BP improved from a mean of 151/80 mmHg at referral to 137/75 mmHg in subsequent visits. At follow-up visits, 62% of BPs were still >130 mmHg systolic or 85 mmHg diastolic. For proteinuric patients (>1 g/day), 75% of follow-up visits showed BP >125/75 mmHg, despite angiotensin-converting enzyme inhibitor use increasing from 35% at referral to 79% at follow-up. Twenty-four percent of patients started renal replacement therapy, initially haemodialysis (HD) in 57%, peritoneal dialysis (PD) in 35% and pre-emptive transplant in 8%. Thirty-eight percent of dialysis starts occurred within 6 months of referral, but PD was the modality in half of these. Only half of the HD patients started using an aterio-venous fistula, and of those using a central catheter 11 of 24 had been followed >6 months, but only four of them had attempted fistula creation. CONCLUSIONS: CKD clinic attendance was associated with improvements in metabolic and BP control, and was able to facilitate the use of PD even for late referrals. However, even the multidisciplinary model with nephrologists, nurse educators and dietitians was unable to achieve guideline-recommended metabolic, anaemia, BP and access targets for a significant number of patients.

Amyotrophic lateral sclerosis care in Italy: a nationwide study in neurological centers.

Recently, formal standards for the management of amyotrophic lateral sclerosis (ALS) have been proposed by the American Academy of Neurology (AAN). However, there are few information about the actual care of ALS. We have assessed the management of ALS in Italy in various clinical settings, on basis of a self-reported questionnaire. Thirty-six out of the 80 Italian ALS neurological departments with a particular interest in ALS care answered the questionnaire. The centers were subdivided according the mean number of patients currently followed-up (> or =30 vs. <30). An integrated health-care team for ALS existed in all large centers but only in 14% of small centers (p=0.0001). Diagnosis was communicated to most but not all patients. Symptomatic therapies were generally offered to patients in all centers. Nutritional interventions, including percutaneous endoscopic gastrostomy (PEG), were proposed by most centers, but the percentage of patients who underwent PEG was significantly higher in large centers (p=0.04). Respiratory management seemed to be lacking both in large and in small centers since non-invasive positive pressure ventilation (NIPPV) was proposed by only 70% of large and 50% of small centers; however, the percentage of patients who underwent NIPPV was significantly higher in large centers (p=0.03). Moreover, the discussion of respiratory issues was performed quite late in the course of the disease, usually when the patients have first respiratory symptoms. Therefore, there are considerable opportunities to improve the care of ALS patients in Italy, primarily through the education of neurologists on AAN standards of care for ALS.

Development of minimum criteria for the initiation of antibiotics in residents of long-term-care facilities: results of a consensus conference.

Establishing a clinical diagnosis of infection in residents of long-term-care facilities (LTCFs) is difficult. As a result, deciding when to initiate antibiotics can be particularly challenging. This article describes the establishment of minimum criteria for the initiation of antibiotics in residents of LTCFs. Experts in this area were invited to participate in a consensus conference. Using a modified delphi approach, a questionnaire and selected relevant articles were sent to participants who were asked to rank individual signs and symptoms with respect to their relative importance. Using the results of the weighting by participants, a modification of the nominal group process was used to achieve consensus. Criteria for initiating antibiotics for skin and soft-tissue infections, respiratory infections, urinary infections, and fever where the focus of infection is unknown were developed.

Improving the quality of institutional care of urinary incontinence among the elderly: a challenge for governmental regulation.

This article describes actual UI prevalence and quality of care at Israeli LTC institutions for the elderly. The analysis is based on current regulatory data on 14,406 residents at 196 residential homes, and 8,278 patients at 159 hospitals for the chronically ill. It includes a calculation of summary indices of quality, the percentage of institutions with deficient items and of those showing change, and a description of functional status profiles. Multiple regression explains the deficiency rate variance through independent institutional variables. There is a higher prevalence of severe functional impairment and full incontinence at hospitals for the chronically ill than at residential homes. There were higher rates of deficiencies and lower rates of corrections for structural items than for process items at both. A major improvement occurred for process items (50-100 per cent). Regarding outcomes, 34 percent of the residents with UI during the first assessment were continent two years later.

The relationship between patient behaviour and environmental quality for the dementing.

BACKGROUND: The quality of long-term hospital care for demented patients has never been studied in relation to the behaviour of the residents, although this relationship has been studied for other patient groups and in other settings. METHOD: Five aspects of environmental quality were assessed using a rating scale package. Seven wards with a range of quality were selected and patient behaviour categorized and recorded using a direct observation method. RESULTS: Comparative analyses revealed that institutional ward practices were associated with abnormal motor activity and inappropriate behaviour. In addition, social/recreational provision was associated with increased social behaviour and less time spent doing nothing, although high levels of provision were also associated with abnormal motor activity and inappropriate behaviour. Inappropriate behaviour also appeared to be related to a lack of provision of reality orientation cues and to better quality of ward condition. Space availability was not associated with any behavioural patterns. CONCLUSIONS: Some aspects of the environment are associated with patterns of behaviour. There is a need for further research both in this setting and in non-hospital settings.

Shaping healthcare: developing a program evaluation questionnaire.

Healthcare delivery today emphasizes quality improvement in program management. The focus on consumer needs and satisfaction challenges us to develop effective tools to evaluate our services from the user's perspective. This article delineates the development, implementation, analysis, and outcomes of a program evaluation questionnaire that was designed to evaluate program staff and treatment services from the perspectives of both patients and families. The potential this type of consumer opinion gauge and tool has to shape healthcare delivery is outlined within the context of a rehabilitation program.

Long-term acute care: meeting the strategic needs for outcomes information.

Nursing home quality improvement has historically relied on annual surveys conducted by state agencies for its impetus. Such reviews play an important role for assuring that minimum standards are met. However, we need to search for incentives that will make it in the best interest of nursing homes to improve beyond the minimum. This article explores incentives that may play that role.

Implementing modular nursing in a long-term care facility.

Nurse administrators in long-term care are challenged to maintain the quality of nursing care under constant fiscal and staffing pressures. Restructuring nursing care delivery is one method often used to meet this challenge. The authors describe their experience of implementing a nursing care delivery model that resulted in improved continuity of care, accountability for client outcomes, and the effective use of different staff levels.

Computerization of the Medical Quality Improvement program at a chronic care hospital.

Utilizing micro computer technology and a relational data base manager we have successfully computerized the Peer Review functions of the Medical Quality Improvement program at Monroe Community Hospital, a Chronic Care Hospital. The developed computer programs enhance patient care by focusing on potential practitioner errors. The programs allow for trend analysis and identify the disciplines to whom problems have been referred. This effort has pointed to the need of a standardized lexicon to describe and catalogue potential practitioner errors.

A question of balance.

Too few hospitals have clear policies to help patients to spend their money, and patients are often given too little choice. Health authorities and hospitals are in urgent need of better guidance, writes Ginny Jenkins.