The Effect of an Interactive Web-based Program in the Management of Multiple Sclerosis
Condition: Multiple Sclerosis
MeSH terms: Multiple Sclerosis; Sclerosis
Study type: Interventional

Summary: 
      This study aimed to investigate the effect of an interactive web-based program that supports
      nurse-led self-regulation in the management of Multiple Sclerosis (MS) on the
      self-management, fatigue and anxiety levels of patients with Multiple Sclerosis.
    

Detailed description: 
      Detailed Description: Individuals with Multiple Sclerosis are diagnosed at a young age and
      face a long-term, heterogeneous disease process with effects on multiple functional areas. As
      in other chronic diseases, individuals with MS need to develop self-management skills in
      order to be integrated into society, to have an increased quality of life, to reduce the
      burden of symptoms, to prevent disability, and to maintain psychosocial well-being. In order
      to improve self-management skills, it is important for the healthcare team to have a
      supervisory and educational role and to carry out the clinical and social follow-up of these
      individuals closely. Studies have shown that those with MS do not generally use health
      services except for the attack periods or they have problems in reaching the health care team
      due to reasons such as fatigue and disability. It is reported that individuals with MS mostly
      seek information on the Internet, on social media or from peers, and they do not consult the
      healthcare team about this inaccurate or insufficient information. All these factors clearly
      indicate that digital health (e-health) services should become widespread alongside
      traditional health services in order to improve the self-management skills of individuals
      with MS.

      It is seen in the literature that various web-based programs with different interfaces and
      features have been developed by different healthcare team members for individuals with MS;
      however, many of these programs have not been evaluated in randomized controlled studies and
      are not nurse-led. MS is considered as a very long journey for individuals and their
      families, and nurses accompany individuals with MS and their families as a leading force to
      support self-management throughout this journey. No interactive web-based programs have been
      developed to support the self-management skills of individuals with MS in Turkey. Considering
      that this is an important gap, an interactive web-based program named "Yönetebilirim", which
      supports self-regulation under the leadership of nurses, was developed. This study aims to
      evaluate the effect of "Yönetebilirim" on self-management, fatigue and anxiety levels of
      individuals with MS with a randomized controlled design.

      Yönetebilirim "Yönetebilirim" is an interactive web-based program developed to improve the
      self-management skills of individuals with MS by supporting self-regulation under the
      leadership of nurses. The program was shaped in accordance with action research in a
      collaborative design and was implemented between February 2021 and May 2022 with the approval
      of the non-interventional clinical research ethics committee of a university (2021/61). Under
      the coordination of the action researcher (program coordinator), the components of the
      web-based program were shaped by individuals with MS, nurses caring for individuals with MS,
      and software specialists. The self-regulation strategies formed the theoretical basis of the
      web-based program. The domain name of the program has been taken and its address has been
      determined as "yonetebilirim.com".

      The program consists of modules and consultancy services. Modules There are a total of 10
      modules in the program and the modules are presented under two headings as "Informative" and
      "Interactive". The topics of the modules are as follows: Recognizing MS and Attack
      management, Coping with fatigue, Sexual health, Bladder and Urinary problems,
      Self-monitoring, Healthy lifestyle behaviors, Importance of physiotherapy, MS Stories and
      Laughter therapy. The speakers in the modules are a specialist neurologist, academician
      nurses, specialist nurses, a specialist physiotherapist, and a laughter therapist who
      voluntarily agreed to support the program. The modules consist of discussion sessions based
      on the program coordinator's questions and the speakers' answers. The content of the videos
      was created by the speakers according to their fields of expertise. The informative modules
      include video recordings and written documents aiming at sharing information. The interactive
      modules consist of interactive live webinars created to increase motivation.

      Consultancy Services After the participants are accepted to the program, they will be able to
      access the program with their own username and password. Participants will be able to receive
      counseling from the nurse with a written message using the "Consult" link on the main screen
      of the program, and the nurse will be able to answer questions through the system. If they
      wish, participants will be able to make an appointment to meet online with the video
      conference method by clicking on the "Request a Meeting" link.
    

Intervention name(s): Yönetebilirim
Intervention type(s): Behavioral
Intervention description(s): "Yönetebilirim" is an interactive web-based program developed to improve the self-management skills of individuals with MS by supporting self-regulation under the leadership of nurses.
Allocation: Randomized
Intervention model: Parallel Assignment
Intervention model description: A randomized controlled trial with a two-group pre-test and post-test design
Masking: Single (Outcomes Assessor)
Primary purpose: Supportive Care
Keywords: Multiple Sclerosis; Self-Management; Nursing; Self-Regulation