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Identifying unmet needs in SSc-ILD by semi-qualitative in-depth interviews
Anna-Maria Hoffmann-Vold1, Elisabeth Bendstrup2, Theodoros Dimitroulas3
1Department of Rheumatology, Oslo University Hospital, Oslo, Norway.
Rheumatology (Oxford, England)
|February 15, 2021
Summary
Patients with Systemic Sclerosis-Interstitial Lung Disease (SSc-ILD) face unmet needs in diagnosis and care. Improving disease knowledge, healthcare systems, and patient support is crucial for better management and quality of life.
Area of Science:
- Rheumatology
- Pulmonology
- Patient Care
Background:
- Systemic Sclerosis-Interstitial Lung Disease (SSc-ILD) significantly impacts patient quality of life.
- Understanding patient pathways and experiences is vital for improving SSc-ILD management.
Purpose of the Study:
- To analyze patient pathways and experiences of patients and healthcare providers (HCPs) in SSc-ILD management.
- To identify unmet needs in the care of SSc-ILD patients across Europe.
Main Methods:
- Qualitative study involving semi-structured interviews with 95 HCPs and 47 patients across eight European countries.
- Exploration of pre-diagnostic, diagnostic, and post-diagnostic phases of the SSc-ILD patient journey.
Main Results:
- Gaps identified include limited disease knowledge among physicians, delayed referrals, and lack of accurate patient information.
- Diagnostic phase challenges involve varying multidisciplinary collaboration and lack of national guidelines.
- Post-diagnostic needs include curative treatments, specialized nursing, and paramedical/psychological support.
Conclusions:
- Unmet needs in SSc-ILD management stem from insufficient disease-specific knowledge, healthcare system gaps, and inadequate patient/caregiver information and support.
- Addressing these needs is essential for timely diagnosis, improved patient management, and enhanced quality of life for SSc-ILD patients.
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