Place of death and associated factors among patients with amyotrophic lateral sclerosis in Madrid (Spain)

Abstract

Our objectives were to analyse the place of death, its temporal trend and associated sociodemographic factors among patients with amyotrophic lateral sclerosis (ALS) resident in the Autonomous Community of Madrid. This was a population based cross-sectional study of deaths from ALS (ICD-10 code G12.2) from 2003 to 2011, included in regional death statistics. The sociodemographic variables were age, gender, marital status, place of residence and socioeconomic level. Logistic regressions were performed to identify factors associated with death in hospital, and odds ratios (OR) with 95% confidence intervals (CI) were calculated. Joinpoint models were used to analyse annual trends for death in hospital.

Of 1035 patients who died of ALS, 56.1% died in a hospital, 30.4% at home, 8.3% in a residential home and it was unknown for 5.1%. The percentage of deaths in hospital was lower in older and in single people than in married ones (55.0% and 61.9%, respectively; ORa 0.74, 95% CI 0.57–0.97). This percentage increased progressively as socioeconomic level fell (66.3% in Q5 compared to 49.6% in Q1, ORa 2.03, 95% CI 1.36–3.02). A significant increase in the percentage of deaths in hospital was observed. In conclusion, factors such as age, marital status or socioeconomic level play a part in the place of death of those with ALS.

Key words::

• Amyotrophic lateral sclerosis
• end-of-life care
• health services research
• socioeconomic factors
• trends

Acknowledgements

Enrique Barceló-Gónzalez and Luis Miguel Blanco Ancos are acknowledged for their help in preparing the databases.

Declaration of interest

All authors declare no conflicts of interest.

Partial funding was provided by the Spanish Rare Diseases Registries Research Network (SpainRDR), IR11-RDR. Carlos III Health Institute (ISCIII) - International Rare Diseases Research Consortium (IRDiRC)