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Introduction <p>Due to recent progress in multiple sclerosis (MS) research, a range of disease-modifying therapies (DMT) is increasingly available. According to the personalized therapeutic approach, the choice of DMT for a particular patient is based on complex analysis of disease-related and drug-related aspects, with emphasis on patient’s preferences and shared decision-making. The aim of this study was to evaluate the perspective of the disease and various aspects of treatment in Polish patients with MS (pwMS), with reference to sociodemographic and clinical data.</p> Methods <p>The nationwide survey was conducted, addressed to adult pwMS treated with DMT and undergoing regular follow-up in regional MS Centers. The questionnaire contained sociodemographic data, and questions about major troublesome and feared aspects of disease, and about the importance of various aspects of treatment. In addition, MS-related data were provided by neurologists. The responses have been summarized and analyzed for their relationships with sociodemographic and clinical data.</p> Results <p>A total of 2032 pwMS (70% women; mean age 42.1&#xa0;±&#xa0;10.8&#xa0;years) were included from 14 MS Centers. Over 90% had relapsing–remitting MS, mean disease duration was 12&#xa0;years and the median Expanded Disability Status Scale (EDSS) was 2.4&#xa0;±&#xa0;1.5.</p> <p>Fatigue (50%), limb weakness (47%), and balance and gait disturbances (30%) were the most common and troublesome symptoms reported by the respondents. Their main concerns about disease consequences included disability (46%) and dependence on others (17%). All aspects of DMT efficacy were very important for more than 70% of patients, with preventing disability progression, maintaining social participation, and reduction of relapses as top priorities (86–95%). Treatment safety concerns were focused on risk of cancer (74%), effect on comorbidities (63%), and severe infections (60%). Drug efficacy (93%), modernity (60%), and mechanism of action (59%) were most commonly indicated factors influencing patients’ preference for DMT. Significant relationships were found between pwMS opinion about aspects of treatment and their age, sex, family status and vocational activity, as well as type and duration of MS, EDSS score, and type of DMT used.</p> Conclusion <p>The Polish pwMS perspective of disease is focused on emerging disability and its social context. Regarding aspects of treatment, sufferers are highly concerned about its efficacy (especially in preventing the mentioned disease consequences), followed by safety and convenience. Individual differences in patients’ responses should be highlighted, associated with combined impact of demographic and clinical data. The study findings should inform complex and personalized therapeutic approaches to MS management in clinical practice.</p>

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Perspective of Disease and Treatment in Patients with Multiple Sclerosis: A Polish Multi-center Study

  • 期刊论文

  • 出版模式：

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  • 发表日期：

    2025年9月30日

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  • Justyna Chojdak-Łukasiewicz,
  • Alina Kułakowska,
  • Joanna Tarasiuk,
  • Katarzyna Kapica-Topczewska,
  • Joanna Siuda,
  • Weronika Galus,
  • Maja Patalong-Ogiewa,
  • Aleksandra Kaczmarczyk,
  • Anetta Lasek-Bal,
  • Ewa Krzystanek,
  • Arkadiusz Stęposz,
  • Aleksandra Karuga,
  • Elżbieta Jasińska,
  • Katarzyna Gołuch,
  • Waldemar Brola,
  • Martyna Odzimek,
  • Agnieszka Słowik,
  • Klaudia Kaczówka,
  • Marcin Wnuk,
  • Monika Marona,
  • Konrad Rejdak,
  • Anna Jamroz-Wiśniewska,
  • Mariusz Stasiołek,
  • Bartosz Bielecki,
  • Mariola Świderek-Matysiak,
  • Małgorzata Siger,
  • Andrzej Głąbiński,
  • Marta Milewska-Jędrzejczak,
  • Beata Łabuz-Roszak,
  • Małgorzata Gardzińska,
  • Maja Sakowska,
  • Halina Bartosik-Psujek,
  • Iwona Rościszewska-Żukowska,
  • Małgorzata Popiel,
  • Julia Rudnicka-Czerwiec,
  • Andrzej Potemkowski,
  • Monika Adamczyk-Sowa,
  • Katarzyna Kubicka-Bączyk,
  • Natalia Niedziela,
  • Aleksandra Kołtuniuk,
  • Sławomir Budrewicz,
  • Anna Pokryszko-Dragan

摘要

Introduction

Due to recent progress in multiple sclerosis (MS) research, a range of disease-modifying therapies (DMT) is increasingly available. According to the personalized therapeutic approach, the choice of DMT for a particular patient is based on complex analysis of disease-related and drug-related aspects, with emphasis on patient’s preferences and shared decision-making. The aim of this study was to evaluate the perspective of the disease and various aspects of treatment in Polish patients with MS (pwMS), with reference to sociodemographic and clinical data.

Methods

The nationwide survey was conducted, addressed to adult pwMS treated with DMT and undergoing regular follow-up in regional MS Centers. The questionnaire contained sociodemographic data, and questions about major troublesome and feared aspects of disease, and about the importance of various aspects of treatment. In addition, MS-related data were provided by neurologists. The responses have been summarized and analyzed for their relationships with sociodemographic and clinical data.

Results

A total of 2032 pwMS (70% women; mean age 42.1 ± 10.8 years) were included from 14 MS Centers. Over 90% had relapsing–remitting MS, mean disease duration was 12 years and the median Expanded Disability Status Scale (EDSS) was 2.4 ± 1.5.

Fatigue (50%), limb weakness (47%), and balance and gait disturbances (30%) were the most common and troublesome symptoms reported by the respondents. Their main concerns about disease consequences included disability (46%) and dependence on others (17%). All aspects of DMT efficacy were very important for more than 70% of patients, with preventing disability progression, maintaining social participation, and reduction of relapses as top priorities (86–95%). Treatment safety concerns were focused on risk of cancer (74%), effect on comorbidities (63%), and severe infections (60%). Drug efficacy (93%), modernity (60%), and mechanism of action (59%) were most commonly indicated factors influencing patients’ preference for DMT. Significant relationships were found between pwMS opinion about aspects of treatment and their age, sex, family status and vocational activity, as well as type and duration of MS, EDSS score, and type of DMT used.

Conclusion

The Polish pwMS perspective of disease is focused on emerging disability and its social context. Regarding aspects of treatment, sufferers are highly concerned about its efficacy (especially in preventing the mentioned disease consequences), followed by safety and convenience. Individual differences in patients’ responses should be highlighted, associated with combined impact of demographic and clinical data. The study findings should inform complex and personalized therapeutic approaches to MS management in clinical practice.