TY - JOUR
T1 - Optimal care for systemic sclerosis patients
T2 - recommendations from a patient-centered and multidisciplinary mixed-method study and working conference
AU - Spierings, Julia
AU - van den Ende, Cornelia
AU - Schriemer, Rita
AU - de Pundert, Lian
AU - Moens, Hein Bernelot
AU - van Laar, Jaap
AU - de Vries-Bouwstra, Jeska
AU - Vonk, Madelon
N1 - Publisher Copyright:
© 2018, The Author(s).
PY - 2019/4/2
Y1 - 2019/4/2
N2 - 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.
AB - 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.
KW - Consensus
KW - Female
KW - Health Personnel
KW - Health Services Needs and Demand
KW - Humans
KW - Male
KW - Needs Assessment
KW - Patient-Centered Care/standards
KW - Quality Improvement
KW - Scleroderma, Systemic/therapy
UR - http://www.scopus.com/inward/record.url?scp=85056868010&partnerID=8YFLogxK
U2 - 10.1007/s10067-018-4358-x
DO - 10.1007/s10067-018-4358-x
M3 - Article
C2 - 30448933
SN - 0770-3198
VL - 38
SP - 1007
EP - 1015
JO - Clinical Rheumatology
JF - Clinical Rheumatology
IS - 4
ER -