Abstract
IntroductionThe interest in patient demographics and disease management has increased in the past years due to their utility in developing measures that allow healthcare providers to reflect disease complexity.ObjectiveTo revise the current status of spinal muscular atrophy in the region of Catalonia, and to validate the utility of the database for this aim.MethodsFive hundred twenty-four patients diagnosed with a spinal muscular atrophy were identified in the region of Catalonia via the novel program of data analysis for research and innovation in health (PADRIS). Patient records included in the analysis corresponded to primary care, hospital, emergency room, extended care and mental health admissions between 2007 and 2017.Results58.02% of patients with a SMA diagnosis were males while 40.84% were females. Average age of diagnosis was 38.31 ± 24.49 years ±SD. Significantly lower was the age of diagnosis of spinal muscular atrophy type I, 1.81 ± 3.01 years. An average of 22 patients died per year during the study period, with a mean decease age of 62.96 ± 25.41 years. Patients were generally attended in hospitals, and the use of healthcare resources was focused on resolving respiratory issues and scoliosis. The highest ratio of admissions per patient was registered in those aged 0 to 4 years. Patients presented a higher risk than the general population and a higher frequency of multimorbidites.ConclusionsPatients exhibited similar characteristics to prior European studies. Multiple admissions in younger patients, mostly due to respiratory issues, have a central role in increasing medical costs of SMA. Equally, the higher risk of patients and increased number of multimorbidity groups translate in an elevated number of admissions in health centres and ER, deriving in higher expenses.
Highlights
The interest in patient demographics and disease management has increased in the past years due to their utility in developing measures that allow healthcare providers to reflect disease complexity
The first set of analyses examined patient records corresponding to 524 patients, most of them diagnosed with a progressive Spinal muscular atrophy (SMA)
The PADRIS program allowed the assessment of SMA current status in the region of Catalonia in consideration of patient demographics and disease management
Summary
The interest in patient demographics and disease management has increased in the past years due to their utility in developing measures that allow healthcare providers to reflect disease complexity. SMA-II has its onset between 7 and 18 months of age, before the child is Considering all disease manifestations, the paediatric population remains the most affected by this disorder. The analysis of patient demographics has been proven useful to determine the specific needs of patients and physicians in terms of use of healthcare resources, in order to develop measures that allow reflexing disease complexity [8]. To facilitate such analyses, healthcare providers collect detailed information on healthcare usage. The aim of this study was to develop a retrospective multicentre analysis via the records registered in PADRIS to scrutinise SMA patients’ demographics and disease management in Catalonia between 2007 and 2017. A secondary objective of the study was to validate the utility of PADRIS records prior to the program’s full operation
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