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Cognitive difficulties in people with systemic sclerosis: a qualitative study.

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People with systemic sclerosis (SSc) experience significant cognitive difficulties impacting daily life. Understanding these challenges is crucial for developing effective management strategies and interventions.

Keywords:
activities of daily livingcognitive dysfunctioncoping behaviourqualitative researchself-managementsystemic sclerodermasystemic sclerosis

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Area of Science:

  • Neurology
  • Rheumatology
  • Psychology

Background:

  • Systemic sclerosis (SSc) is a complex autoimmune disease.
  • Cognitive changes are increasingly recognized as a significant issue for SSc patients.
  • The lived experience of cognitive difficulties in SSc requires further exploration.

Purpose of the Study:

  • To qualitatively explore the lived experiences of cognitive changes in individuals with SSc.
  • To understand how these cognitive difficulties impact daily functioning.
  • To identify coping mechanisms and information needs related to cognitive challenges in SSc.

Main Methods:

  • Qualitative study employing focus groups.
  • Recruitment from SSc research registry and social media.
  • Content analysis using grounded theory methodology.

Main Results:

  • Twenty participants (mean age 55.5 years, 80% female) with SSc shared their experiences.
  • Key themes included cognitive difficulties in daily life, impact on functioning, coping strategies, and information seeking.
  • Commonly reported deficits involved short-term memory, language, executive function, concentration, and processing speed.

Conclusions:

  • Cognitive difficulties significantly and negatively impact the lives of individuals with SSc.
  • Further understanding of these cognitive changes is needed.
  • This knowledge can inform the development of therapeutic interventions and educational programs for symptom self-management.