RESUMO
Introducción: La Poliquistosis Renal Autosómica Dominante es una enfermedad renal crónica responsable del 10% de los casos de insuficiencia renal terminal. La participación y los grupos de apoyo entre iguales son herramientas que mejoran el bienestar, evitando complicaciones y retrasando el avance de la enfermedad. Objetivos: Detectar necesidades informativas, así como recursos de apoyo, en este grupo de pacientes mediante la puesta en marcha de una Escuela de Pacientes con poliquistosis renal autosómica dominante. Material y Método: Se utilizó un diseño mixto (cuantitativo y cualitativo). El estudio se desarrolló mediante cuatro fases: 1) Grupo focal: pacientes con poliquistosis renal y sus cuidadores; 2) Selección de los pacientes expertos; 3) Elaboración de los contenidos del programa de la Escuela de pacientes con poliquitstosis renal autosómica dominante; 4) Pilotaje del programa. Resultados: Se detectaron necesidades de información referentes al tratamiento oral y al afrontamiento de la poliquistosis renal que no están cubiertas por los equipos de nefrología. Conclusiones: La Escuela de Pacientes ha demostrado ser una herramienta útil para detectar necesidades y recursos en pacientes con poliquistosis renal autosómica dominante que han de enfrentarse a una enfermedad crónica donde se requiere la participación del paciente para garantizar la adhesión al tratamiento
Introduction: Autosomal Dominant Polycystic Kidney Disease is a chronic kidney disease responsible for 10% of cases of end-stage renal failure. Participation and peer support groups are tools that improve well-being, avoiding complications and delaying disease progression. Objectives: To detect information needs, as well as support resources, in patients with autosomal dominant polycystic kidney disease trough a Patient School. Material and Method: A mixed design (quantitative and qualitative) was used. The study was developed through four phases: 1) Focus group: patients with autosomal dominant polycystic kidney disease and their caregivers; 2) Selection of expert patients; 3) Preparation of the contents of the program of the Patient School with autosomal dominant polycystic kidney disease; 4) Piloting the program. Results: Information needs regarding oral treatment and coping with autosomal dominant polycystic kidney disease were detected, which are not covered by nephrology teams. Conclusions: Patients School has proven to be a useful tool to detect needs and resources in patients with autosomal dominant polycystic kidney disease who have to face a chronic disease where patient participation is required to ensure adherence to treatment
Assuntos
Humanos , Autogestão/educação , Rim Policístico Autossômico Dominante/enfermagem , Grupos de Treinamento de Sensibilização/organização & administração , Avaliação de Eficácia-Efetividade de Intervenções , Educação de Pacientes como Assunto/estatística & dados numéricos , Progressão da Doença , Informação de Saúde ao Consumidor/organização & administraçãoRESUMO
BACKGROUND: The Emotional State Instrument for Dialysis Patients (ES-D) is a brief semistructured questionnaire to assess emotional distress in patients undergoing dialysis. It was designed to be administered by a healthcare provider. A previous study showed preliminary indicators of its content and face validity. OBJECTIVE: The aim of the current multicenter study was to explore the ES-D's psychometric properties. METHODS: A total of 605 patients with kidney disease undergoing dialysis (524 hemodialysis and 81 peritoneal dialysis) in 19 Spanish dialysis centers completed the ES-D, along with anxiety, depression (Hospital Anxiety and Depression Scale), and resilience (Brief Resilience Scale) questionnaires. The 75 healthcare providers who performed the assessments completed a satisfaction survey. RESULTS: The ES-D showed adequate internal consistency (α = .73). Correlations between the ES-D scores and the scores for anxiety, depression, and resilience showed evidence of its convergent and concurrent validity. The receiver operating characteristic curve analyses showed that a cutoff of nine detected patients with moderate-to-severe emotional distress. According to these criteria, 35.4% of patients showed emotional distress. No significant differences were found between patients undergoing hemodialysis and peritoneal dialysis. The healthcare providers perceived the ES-D as useful for knowing the patients' emotional state, understanding patients' concerns, and establishing therapeutic relationships. CONCLUSIONS: The ES-D is a useful tool for healthcare providers to explore the emotional dimension of their patients. Thus, its development represents a step forward in the improvement of comprehensive assistance and the quality of life of patients with kidney disease undergoing dialysis.
