Atencion integral al paciente con poliquistosis renal genética. Perfil clínico y experiencia vital subjetiva

Abstract

Autosomic dominant renal polycystosis affects 5%-10% of people on haemodialysis or with kidney transplants. This study has a two-fold purpose: to determine the clinical profile of the patient with renal polycystosis and to understand how this dise ase affects different vital stages. The research design is quantitative and qualitative in order to meet each of the proposed goals. The quantitative perspective encompasses a retrospective descriptive review of the case histories of the patients treated at our centre with this diagnosis between the years 2000 and 2005 (N=161). To cover qualitative aspects of the disease, two in-depth, semi-structured interviews were carried out with people whose diagnosis has acted as a conditioning factor in personal and family decision-making. The profile of the patient with renal polycystosis is that of person with an average age of 58 years with liver polycystosis, and with a family history of the disease and several associated pathologies, the most frequent being hypertension. The in-depth interviews denote the presence of chronic pain, with an alteration of daily life and family dynamics. The uncertainty as to its evolution and treatment produces anxiety and progressive emotional wear.