ArticleClinical rheumatology2019
Optimal care for systemic sclerosis patients: recommendations from a patient-centered and multidisciplinary mixed-method study and working conference.
Article in Clinical rheumatology, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 papers.
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Who cites it
13 citing papers in PubMed, 29 citations in OpenAlex.
- Article
- Early, integrated systemic sclerosis palliative care for patients and their caregivers: description of a new model of care.Rheumatology advances in practice · 2025Article
- Patient and caregiver perspectives of an early integrated systemic sclerosis palliative care clinic: a qualitative study.Rheumatology advances in practice · 2025Article
- Step forward in early recognition of systemic sclerosis: data from the Leiden CCISS cohort.RMD open · 2023Article
- Patient Assessment Chronic Illness Care (PACIC) and its associations with quality of life among Swiss patients with systemic sclerosis: a mixed methods study.Orphanet journal of rare diseases · 2023Article
- Multidisciplinary teams in the clinical care of fibrotic interstitial lung disease: current perspectives.European respiratory review : an official journal of the European Respiratory Society · 2022Review
- Identifying unmet needs in SSc-ILD by semi-qualitative in-depth interviews.Rheumatology (Oxford, England) · 2021Article
- Patient and healthcare professional eHealth literacy and needs for systemic sclerosis support: a mixed methods study.RMD open · 2021Article
- Article
- Requirements for systemic sclerosis expert centres in the Netherlands: A Delphi consensus study.Journal of scleroderma and related disorders · 2021Article
- How do patients with systemic sclerosis experience currently provided healthcare and how should we measure its quality?Rheumatology (Oxford, England) · 2020Article
- Diagnosis and treatment of patients with antiphospholipid syndrome: a mixed-method evaluation of care in The Netherlands.Rheumatology advances in practice · 2020Article
- Room for improvement in non-pharmacological systemic sclerosis care? - a cross-sectional online survey of 650 patients.BMC rheumatology · 2020Article
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Authors and funding
8 authors at 6 institutions in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
introductionSystemic sclerosis (SSc) is a chronic autoimmune disease with multiorgan involvement.
objectiveIdentify preferences and priorities among patients and health care professionals regarding care for SSc patients in The Netherlands. Develop ideas to improve quality of care.
methodsA structured approach was followed to collect information from different perspectives to prepare a working conference. Qualitative and quantitative data from patients (n = 650), rheumatologists (n = 167), nurses (n = 51), and health professionals (n = 85) from regional centers and university hospitals were collected. In February 2018, a working conference was organized. Seventy-seven persons (including 10 SSc patients) from different backgrounds discussed the identified themes and survey results. Ideas to improve health care were formulated and prioritized using nominal group technique.
resultsFive key themes were identified: (1) shared care and multidisciplinary collaboration, (2) medical data exchange, (3) information for both patients and health care professionals, (4) patient empowerment, and (5) non-pharmacological care. Shared care was the preferred model of care in 49% of patients and 82% of physicians. However, current collaboration structures, especially between hospitals, should be improved. Suggestions for improvements were explicitly formulated agreements about referral, clear task division, treatment coordination, and exploration of novel ways to exchange medical records. The creation of a national web-based information hub was highly prioritized.
conclusionIn this mixed-method study, broad-based consensus was achieved and recommendations were developed to improve health care for SSc patients. The approach, recommendations, and challenges summarized in this paper can be of use for health care professionals and other actors involved in patients with rare, chronic, and multisystem conditions.
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