Characterization, epidemiology, and factors associated with evolution and survival in patients with amyotrophic lateral sclerosis in southeastern Spain, 2008-2021: a population-based study.

Objective: To describe the epidemiology, characteristics, and factors associated with the evolution and survival in patients with amyotrophic lateral sclerosis (ALS) in a region of southeastern Spain.

Methods: An observational study was carried out in people with a diagnosis of ALS in the period 2008-2021 who were registered in the Information System of Rare Diseases of the Region of Murcia (SIER). We calculated crude and standardized incidence rate (SIR) using European Standard Population of 2013 and point prevalence.

Analysis of the genotypic profile and its relationship with the clinical manifestations in people with cystic fibrosis: study from a rare disease registry.

Background: Cystic fibrosis (CF) has a vast and heterogeneous mutational spectrum in Europe. This variability has also been described in Spain, and there are numerous studies linking CFTR variants with the symptoms of the disease. Most of the studies analysed determinate clinical manifestations or specific sequence variants in patients from clinical units.

Health-Related Quality of Life in Adult Spanish Women with Endometriomas or Deep Infiltrating Endometriosis: A Case-Control Study.

Endometriosis is a disabling disease that may significantly compromise a woman's social relationships, sexuality, and mental health. Considering the impact of endometriomas and deep infiltrating endometriosis (DIE) on quality of life and the limited number of papers on this topic, the objective of this study was to assess health-related quality of life (HRQoL) in adult Spanish women with the condition. A case-control study was conducted on a group of 99 patients with ovarian endometriomas or DIE and 157 controls.

Population-based Study of First Hospitalizations for Heart Failure and the Interaction Between Readmissions and Survival.

Introduction And Objectives: Disease progression in patients after a first hospitalization for heart failure (HF), in particular the interaction between survival and rehospitalizations, is not well established.

Methods: We studied all patients with a first hospitalization and main diagnosis of HF from 2009 to 2013 by analyzing the Minimum Data Set of the Region of Murcia. Both incident and recurrent patients were studied, and the trend in hospitalization rates was calculated by joinpoint regression.

Trends, causes and timing of 30-day readmissions after hospitalization for heart failure: 11-year population-based analysis with linked data.

Background: Reliable data are necessary if the burden of early readmissions following hospitalization for heart failure (HF) is to be addressed. We studied unplanned 30-day readmissions, their causes and timing over an 11-year period, using population-based linked data.

Methods: All hospitalizations from 2003 to 2013 were analyzed by using administrative linked data based on the Minimum Basic Set discharge registry of the Department of Health (Region of Murcia, Spain).

Trends and Characteristics of Hospitalization for Heart Failure in a Population Setting From 2003 to 2013.

Introduction And Objectives: Population-based studies in other countries have reported a reduction of standardized rates of hospitalization for heart failure (HF) but data from a well-defined population are lacking in Spain.

Methods: All hospitalizations with a principal diagnosis of HF between 2003 and 2013 were obtained from the Minimum Basic Data Set, which includes all hospitals in the Region of Murcia. Health care episodes were identified by the individual health card (27 158 episodes).

[Response bias in a population postal survey on Health-Related Quality of Life (sf-12v2)].

Background: the bias associated with the low response rate may limit the economic advantage of population surveys by mail. The factors associated with non-response were estimated with an emphasis on Health-Related Quality of Life (HRQoL).

Methods: people who had answered to the Health Survey Murcia-2007 2007 (≥ 18 years), realized by telephone, were sent another postal questionnaire four months later.

Evolution of the use of noninvasive mechanical ventilation in chronic obstructive pulmonary disease in a Spanish region, 1997-2010.

Introduction: Noninvasive mechanical ventilation (NIV) appeared in the 1980s as an alternative to invasive mechanical ventilation (IMV) in patients with acute respiratory failure. We evaluated the introduction of NIV and the results in patients with acute exacerbation of chronic obstructive pulmonary disease in the Region of Murcia (Spain).

Subjects And Methods: A retrospective observational study based on the minimum basic hospital discharge data of all patients hospitalised for this pathology in all public hospitals in the region between 1997 and 2010.

[Population based norms of the Spanish version of the SF-12V2 for Murcia (Spain)].

Objective: Questionnaires on perceived health provide information on health results. Reference values are needed to assess these results. Previous studies have provided Spanish population-based norms for the SF-12v1.

[Reference values of the Spanish version of the SF-12v2 for the diabetic population].

Objective: Perceived health status questionnaires provide important information for health outcomes research. Reference measures are required to interpret the health-related quality of life questionnaires belonging to the short form (SF) health survey family. Previous studies have provided these reference measures for the Spanish general population, but not for specific disease conditions.