Exploring the experience of multiple sclerosis patients in Turkey: Insights from a national survey

Authors

  • Melih Tütüncü Istanbul University Cerrahpasa Faculty of Medicine, Istanbul
  • Serkan Demir University of Health Sciences Sehit Prof. Dr. Ilhan Varank Sancaktepe Research and Training Hospital, Istanbul
  • Tuncay Gündüz Istanbul University Istanbul Faculty of Medicine, Istanbul
  • Kamil Mavi Novartis Pharmaceuticals, Istanbul
  • Çağcan Ölmez Novartis Pharmaceuticals, Istanbul
  • Fatih İğde Novartis Pharmaceuticals, Istanbul
  • Cihat Uzunköprü Katip Celebi University Faculty of Medicine, Izmir
  • Ali Özhan Sıvacı Bursa Yuksek Ihtisas Training and Research Hospital, Bursa
  • Sıla Usar İncirli Private Neurology Clinic, Nicosia
  • Damla Çetinkaya Tezer University of Health Sciences Sehit Prof. Dr. Ilhan Varank Sancaktepe Research and Training Hospital, Istanbul
  • Haluk Gümüş Selcuk University Faculty of Medicine, Konya
  • İpek Güngör Doğan University of Health Sciences Sehit Prof. Dr. Ilhan Varank Sancaktepe Research and Training Hospital, Istanbul
  • Bilge Piri Çınar Samsun University Faculty of Medicine, Samsun
  • Sena Destan Bünül Kocaeli University Faculty of Medicine, Kocaeli
  • Meral Seferoğlu Bursa Yuksek Ihtisas Training and Research Hospital, Bursa
  • Ayşe Sağduyu Kocaman Acibadem University School of Medicine, Istanbul
  • Aksel Siva Istanbul University Cerrahpasa Faculty of Medicine, Istanbul

DOI:

https://doi.org/10.54029/2024pdh

Keywords:

Multiple sclerosis, patient profile, disease background, treatment, disability status, patient’s perspectives, preferences and expectations

Abstract

Objective: To evaluate sociodemographic profile, clinical characteristics, disability and treatment status of multiple sclerosis (MS) patients in Turkey with respect to patient perspectives and expectations.

Methods: A total of 2,176 MS patients participated in this cross-sectional questionnaire survey including items on sociodemographic, disease and treatment characteristics, daily life and perspectives and expectations.

Results: Mean (SD) patient age was 36.4(9.4) years and 76.3% of patients were females. The numbness/weakness in the extremities (57.3%) was the most common presenting symptom. Overall, 56.8% reported treatment switch (due to attacks in 47.3%), while 22.2% reported physical disability and 39.7% reported work-related problems. Males had higher rate of MS-related physical disability (33.0% vs. 19.0%, p<0.001) than females. Use of an assistive device was a more common in patients with longer disease duration (≥15 years; 39.0%) and in those under IV treatment (64.0%). Nearly half of patients reported significant concerns related to uncertainty of the future and impaired quality of life as well as lack of hope for future improvement. The majority of patients reported that they would prefer less frequent SC injection dosing and 43.3% reported preference for monthly high- efficacy SC injection.

Conclusion: This nationwide questionnaire-based study in Turkish MS patients revealed the altered disability status with respect to sociodemographic profile, and altered treatment expectations specific to the route of administration, in addition to significant concerns regarding the uncertainty of the future, impaired quality of life and lack of hope for future improvement in nearly half of patients.

Published

2024-10-05

Issue

Vol. 29 No. 3 (2024)

Section

Original Article