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Identifying unmet needs in SSc-ILD by semi-qualitative in-depth interviews
- Source :
- Rheumatology, 60, 5601-5609, Rheumatology, 60, 12, pp. 5601-5609, Rheumatology (Oxford, England), Hoffmann-Vold, A M, Bendstrup, E, Dimitroulas, T, Hesselstrand, R, Morais, A, Peltomaa, R, Smith, V, Welling, J, Vonk, M C & Wuyts, W A 2021, ' Identifying unmet needs in SSc-ILD by semi-qualitative in-depth interviews ', Rheumatology (United Kingdom), vol. 60, no. 12, pp. 5601-5609 . https://doi.org/10.1093/rheumatology/keab154
- Publication Year :
- 2021
-
Abstract
- Objectives Interstitial lung disease is frequent in SSc (SSc-ILD) and associates with significantly reduced quality of life. Here we aimed to analyse patient pathways, and experiences of patients and healthcare providers (HCPs) in order to identify unmet needs in the management of SSc-ILD patients. Methods Semi-structured qualitative interviews conducted in eight European countries looked at HCP (n = 95) and patient perspectives (n = 47) using two sets of 70 research questions. Pre-diagnostic, diagnostic and post-diagnostic phases of the patient pathway were systematically explored. Results (i) In the pre-diagnostic phase several gaps were identified by HCPs and patients in all participating countries: limited disease knowledge among primary care physicians and specialists, lack of accurate patient information, and delayed and/or inappropriate referral. (ii) The diagnostic phase is in most countries coordinated by rheumatologists, who are also the main point of care. Depending on the local health system, organization of multidisciplinary collaboration varies. HCPs issued lack of national guidelines, while patients stated difficulties obtaining disease-related information. (iii) In the post-diagnostic phase, HCPs and patients indicated lack of curative treatment, specialized nurses, and paramedical and psychological support. Patients and caregivers additionally expressed the need for clear information on SSc-ILD. Conclusion Lack of disease specific knowledge, gaps in national healthcare systems and insufficient information and support for patients and caregivers were identified as unmet needs to ensure timely diagnosis, provide better patient management and to improve quality of life in SSc-ILD patients.
- Subjects :
- Disease specific
medicine.medical_specialty
INFORMATION
systemic sclerosis
diagnosis
Health Services Needs and Demand/organization & administration
Patient pathway
Unmet needs
03 medical and health sciences
0302 clinical medicine
Quality of life (healthcare)
Rheumatology
Humans
Medicine
Pharmacology (medical)
030212 general & internal medicine
AcademicSubjects/MED00360
Retrospective Studies
Point of care
030203 arthritis & rheumatology
interstitial lung disease
Health Services Needs and Demand
Scleroderma, Systemic
business.industry
Qualitative interviews
SYSTEMIC-SCLEROSIS
Disease Management
interview
Delivery of Health Care/methods
Clinical Science
Scleroderma, Systemic/diagnosis
3. Good health
Patient management
expert opinion
Caregivers
In depth interviews
Family medicine
3121 General medicine, internal medicine and other clinical medicine
Quality of Life
Inflammatory diseases Radboud Institute for Health Sciences [Radboudumc 5]
Lung Diseases, Interstitial/therapy
Lung Diseases, Interstitial
business
Delivery of Health Care
management
Subjects
Details
- Language :
- English
- ISSN :
- 14620324
- Database :
- OpenAIRE
- Journal :
- Rheumatology, 60, 5601-5609, Rheumatology, 60, 12, pp. 5601-5609, Rheumatology (Oxford, England), Hoffmann-Vold, A M, Bendstrup, E, Dimitroulas, T, Hesselstrand, R, Morais, A, Peltomaa, R, Smith, V, Welling, J, Vonk, M C & Wuyts, W A 2021, ' Identifying unmet needs in SSc-ILD by semi-qualitative in-depth interviews ', Rheumatology (United Kingdom), vol. 60, no. 12, pp. 5601-5609 . https://doi.org/10.1093/rheumatology/keab154
- Accession number :
- edsair.doi.dedup.....9b7c806ec826bad09cdee4acb66235c6