CLINICAL PROFILE, CARE SETTING, AND MORTALITY OUTCOMES IN PATIENTS WITH SPINAL MUSCULAR ATROPHY (SMA) AND RELATED MOTOR NEURON DIAGNOSES IN TURKIYE: A REAL-WORLD DATA ANALYSIS
Author(s)
Mustafa KURNAZ, MSc1, Yagmur Faiz, BSc1, Selin Okcun, MSc2, Guvenc Kockaya, MSc, PhD, MD3, OZNUR SEYHUN, BSc, MFE, MSc3, Utku Ceylan, BSc4, Umay Yentur, BSc4, Barış Erdoğan, .5.
1Econix Research, İstanbul, Turkey, 2Health Economist, Econix Research, İstanbul, Turkey, 3Econix Research, Tallin, Estonia, 4Evideep, İstanbul, Turkey, 5Evideep AG, Basel, Switzerland.
1Econix Research, İstanbul, Turkey, 2Health Economist, Econix Research, İstanbul, Turkey, 3Econix Research, Tallin, Estonia, 4Evideep, İstanbul, Turkey, 5Evideep AG, Basel, Switzerland.
OBJECTIVES: Spinal muscular atrophy (SMA) and related motor neuron diagnoses are rare, progressive neuromuscular conditions associated with substantial clinical burden and diverse care needs. This study aimed to assess clinical characteristics, care settings and mortality outcomes among patients with SMA and related motor neuron diagnoses in Türkiye.
METHODS: Anonymized patient-level real-world data were analyzed based on International Classification of Diseases, 10th Revision (ICD-10) codes related to SMA and motor neuron disorders. Descriptive analyses summarized demographic characteristics, diagnosis, care setting, comorbidity status, and mortality.
RESULTS: A total of 2,691 patients with SMA and related motor neuron conditions were included in the analysis.The most common age group was 45-64 years (n=1,046), followed by 65-84 years (n=722), 18-44 years (n=577), 0-17 years (n=316), and ≥85 years (n=30). Motor neuron disease represented 88.15% of all recorded diagnoses.Among SMA-related diagnoses, SMA and related syndromes accounted for 5.39%, followed by unspecified SMA (3.42%), SMA type I (1.37%), other specified SMA (1.08%), and SMA type II (0.59%). Documented care settings comprised medical treatment (n=355), ICU care (n=105), and outpatient care (n=87).Comorbidity was present in 74.2% of patients, while 25.8% had no recorded comorbidities. Mortality rates were 0.69% in patients aged 18-44 years versus 10.0% in those aged ≥85 years, and 4.01% versus 0.58% among patients with and without comorbidities, respectively.
CONCLUSIONS: This analysis characterized the clinical and outcome profile of patients with SMA and related motor neuron conditions in Türkiye.Motor neuron disease was the predominant diagnostic category, while patients aged 45-64 years constituted the largest subgroup. Comorbidity was commonly documented, and mortality rates increased with advancing age and the presence of comorbidities. Overall, these findings provide evidence from routine clinical practice on the clinical burden, care patterns, and outcome distribution of patients with SMA and related motor neuron conditions.
METHODS: Anonymized patient-level real-world data were analyzed based on International Classification of Diseases, 10th Revision (ICD-10) codes related to SMA and motor neuron disorders. Descriptive analyses summarized demographic characteristics, diagnosis, care setting, comorbidity status, and mortality.
RESULTS: A total of 2,691 patients with SMA and related motor neuron conditions were included in the analysis.The most common age group was 45-64 years (n=1,046), followed by 65-84 years (n=722), 18-44 years (n=577), 0-17 years (n=316), and ≥85 years (n=30). Motor neuron disease represented 88.15% of all recorded diagnoses.Among SMA-related diagnoses, SMA and related syndromes accounted for 5.39%, followed by unspecified SMA (3.42%), SMA type I (1.37%), other specified SMA (1.08%), and SMA type II (0.59%). Documented care settings comprised medical treatment (n=355), ICU care (n=105), and outpatient care (n=87).Comorbidity was present in 74.2% of patients, while 25.8% had no recorded comorbidities. Mortality rates were 0.69% in patients aged 18-44 years versus 10.0% in those aged ≥85 years, and 4.01% versus 0.58% among patients with and without comorbidities, respectively.
CONCLUSIONS: This analysis characterized the clinical and outcome profile of patients with SMA and related motor neuron conditions in Türkiye.Motor neuron disease was the predominant diagnostic category, while patients aged 45-64 years constituted the largest subgroup. Comorbidity was commonly documented, and mortality rates increased with advancing age and the presence of comorbidities. Overall, these findings provide evidence from routine clinical practice on the clinical burden, care patterns, and outcome distribution of patients with SMA and related motor neuron conditions.
Conference/Value in Health Info
2026-11, ISPOR Europe 2026, Vienna, Austria
Value in Health, Volume 29, Issue 12S
Code
RWD105
Topic
Real World Data & Information Systems
Topic Subcategory
Health & Insurance Records Systems
Disease
Rare & Orphan Diseases