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Related Concept Videos

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  1. Home
  3. Research Domains
  5. Education
  7. Specialist Studies In Education
  9. Special Education And Disability
  11. Patient Perspectives On Educational Needs In Scleroderma-interstitial Lung Disease.
  1. Home
  3. Research Domains
  5. Education
  7. Specialist Studies In Education
  9. Special Education And Disability
  11. Patient Perspectives On Educational Needs In Scleroderma-interstitial Lung Disease.

Related Experiment Video

Imaging Features of Systemic Sclerosis-Associated Interstitial Lung Disease
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Imaging Features of Systemic Sclerosis-Associated Interstitial Lung Disease

Published on: June 16, 2020

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Patient perspectives on educational needs in scleroderma-interstitial lung disease.

Tina M Savvaides1, Thomas A Di Vitantonio1, Armani Edgar1

  • 1Division of Pulmonary and Critical Care, Weill Cornell Medicine, New York, NY, USA.

Journal of Scleroderma and Related Disorders
|January 8, 2025

View abstract on PubMed

Summary
This summary is machine-generated.

Patients with systemic sclerosis-interstitial lung disease need better education on disease progression, symptom management, and healthcare navigation. Addressing these knowledge gaps can improve patient quality of life and support.

Keywords:
Sclerodermaeducationfibrosisinterstitial lung disease

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Area of Science:

  • Rheumatology
  • Pulmonology
  • Patient Education

Background:

  • Systemic sclerosis is a rare, chronic connective tissue disease affecting multiple organs, including the lungs (interstitial lung disease).
  • Significant gaps in patient education for systemic sclerosis-interstitial lung disease negatively impact patient health and quality of life.
  • Identifying patient knowledge gaps is crucial for developing effective educational interventions and research.

Purpose of the Study:

  • To identify priority knowledge gaps in patients with systemic sclerosis-interstitial lung disease.
  • To inform the development of targeted educational interventions and future research directions.
  • To enhance patient understanding and self-management of systemic sclerosis-interstitial lung disease.

Main Methods:

knowledge gaps
systemic sclerosis
  • Utilized the nominal group technique with 21 patients diagnosed with systemic sclerosis-interstitial lung disease.
  • Conducted four structured group sessions involving two key questions to elicit knowledge gaps.
  • Employed thematic analysis to categorize and rank patient-identified knowledge gaps.

    • Main Results:

    • Top patient concerns included understanding disease progression, its bodily impacts, and health management (39.7% and 41.3%).
    • Patients also prioritized anticipating future symptoms, coping strategies (19.8%), and non-pharmacological interventions (17.5%).
    • Navigating health system barriers (16.7%) and understanding research efforts (10.3%) were also significant knowledge gaps.

    Conclusions:

    • Patient-centered education must address multifaceted concerns regarding disease management and psychosocial impacts.
    • Improving patient education can empower individuals with systemic sclerosis-interstitial lung disease through enhanced support.
    • Addressing identified knowledge gaps is essential for improving the overall well-being of patients.