Optimal care for systemic sclerosis patients: recommendations from a patient-centered and multidisciplinary mixed-method study and working conference

Abstract

Introduction Systemic sclerosis (SSc) is a chronic autoimmune disease with multiorgan involvement. Objective Identify preferences and priorities among patients and health care professionals regarding care for SSc patients in The Netherlands. Develop ideas to improve quality of care. Methods A 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. Results Five 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. Conclusion In 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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A practical guide to interpreting and applying systematic reviews of qualitative studies in rheumatology

“…Interventions should also emphasize practical tips to cope with fatigue and pain and improve workplace support 8 . Knowledge gained from this systematic review of qualitative studies in systemic sclerosis by Nakayama et al have been used to highlight current gaps around patient‐centered care in the management of systemic sclerosis and as a reference point for the development of patient‐centered care guidelines and recommendations for optimal management 9,10 …”

Opening the black box of non-pharmacological care in systemic sclerosis: a cross-sectional online survey of Dutch health professionals

“…SSc patients consider non-pharmacological care as one of the five main issues affecting the quality of SSc care in need of improvement [9,16,17]. Spierings et al identified the following the top five unmet care needs of patients with SSc: fatigue, Raynaud's phenomenon, physical limitations, and impaired hand and joint function [17]. It remains unknown to what extent these five unmet care needs are addressed by HPs in the treatment of patients with SSc.…”