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Area of Science:

  • Healthcare Research
  • Patient Engagement
  • Information Science

Background:

  • Patient-centered care emphasizes active patient involvement in decision-making.
  • Shared decision-making (SDM) requires patients to have access to reliable health information and to share their values and preferences.
  • Understanding patient information needs is crucial for effective SDM.

Purpose of the Study:

  • To investigate the types of information used by people with multiple sclerosis (pwMS) during shared decision-making (SDM).
  • To identify the primary sources of health information utilized by pwMS in the SDM process.
  • To evaluate the helpfulness of information provided by healthcare professionals (HCPs) for pwMS.

Main Methods:

  • A pilot study employing a semi-structured, web-based survey.
  • Survey distributed through the MS-society in Finland.
  • Data analyzed in the context of the Ottawa Decision Support Framework.

Main Results:

  • All 27 participants expressed a desire to be involved in healthcare decisions.
  • Participants rarely found information from HCPs to be helpful for SDM.
  • PwMS frequently sought additional information via the internet and social media platforms, including Facebook groups.

Conclusions:

  • PwMS actively seek involvement in their healthcare decisions.
  • Current information provision by HCPs may not adequately meet the needs of pwMS for SDM.
  • Online resources and social media play a significant role in supplementing HCP-provided information for pwMS.