Redefining self: patients' decision making about treatment for multiple sclerosis.

Area of Science:

• Neurology
• Psychology
• Healthcare Decision-Making

Background:

• Disease-modifying therapies (DMTs) offer treatment for multiple sclerosis (MS).
• Limited understanding exists regarding patient experiences with complex MS treatment choices.
• Relapsing-remitting MS (RRMS) presents unique challenges in therapeutic decision-making.

Purpose of the Study:

• To explore the lived experience of first-time treatment decisions for RRMS.
• Investigate patient perspectives on accepting, refusing, or delaying DMTs.
• Understand the process of 'redefined self' in MS treatment choices.

Main Methods:

• Phenomenological study design.
• In-depth interviews with nine participants diagnosed with RRMS.
• Analysis of shared perspectives on treatment decision-making.

Main Results:

• A core theme of 'redefined self' emerged, integrating self-image, quality of life, goals, and identity as a person with MS.
• Six supporting themes identified: prioritizing values, illness acknowledgment, cognitive coping ('mental game'), resource seeking, symptom/quality of life evaluation, and family involvement.
• Decision-making is a complex process intertwined with personal identity and life goals.

Conclusions:

• Provides deeper insight into the patient experience of choosing MS therapies.
• Highlights the psychological and personal dimensions of therapeutic choices in MS.
• Offers valuable information for nurses and healthcare professionals supporting MS patients through treatment decisions.