Julia Spierings1, Cornelia van den Ende2,3, Rita Schriemer3,4, Lian de Pundert5, Hein Bernelot Moens6, Jaap van Laar7, Jeska de Vries-Bouwstra8, Madelon Vonk3. 1. Department of Rheumatology and Clinical Immunology, University Medical Center Utrecht, Heidelberglaan 100, 3584 CX, Utrecht, The Netherlands. J.Spierings@umcutrecht.nl. 2. Department of Rheumatology, Sint Maartenskliniek, Nijmegen, The Netherlands. 3. Department of Rheumatology, Radboud University Medical Center, Nijmegen, The Netherlands. 4. NVLE, Dutch Patient Organization for Systemic Autoimmune Diseases, Utrecht, The Netherlands. 5. Department of Rheumatology, Haga Ziekenhuis, The Hague, The Netherlands. 6. Department of Rheumatology, Ziekenhuis Groep Twente, Hengelo, The Netherlands. 7. Department of Rheumatology and Clinical Immunology, University Medical Center Utrecht, Heidelberglaan 100, 3584 CX, Utrecht, The Netherlands. 8. Department of Rheumatology, Leiden University Medical Centre, Leiden, The Netherlands.
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.
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.
Authors: Juliane K Stöcker; Madelon C Vonk; Frank H J van den Hoogen; Maria W G Nijhuis-van der Sanden; Julia Spierings; J Bart Staal; Ton Satink; Cornelia H M van den Ende Journal: BMC Rheumatol Date: 2020-07-31
Authors: Mirthe J Klein Haneveld; Caro H C Lemmen; Tammo E Brunekreef; Marc Bijl; A J Gerard Jansen; Karina de Leeuw; Julia Spierings; Maarten Limper Journal: Rheumatol Adv Pract Date: 2020-06-12
Authors: Agnes Kocher; Michael Simon; Andrew A Dwyer; Catherine Blatter; Jasmina Bogdanovic; Patrizia Künzler-Heule; Peter M Villiger; Diana Dan; Oliver Distler; Ulrich A Walker; Dunja Nicca Journal: RMD Open Date: 2021-09
Authors: Julia Spierings; Cornelia H M van den Ende; Rita M Schriemer; Hein J Bernelot Moens; Egon A van der Bijl; Femke Bonte-Mineur; Marieke P D de Buck; Meeke A E de Kanter; Hanneke K A Knaapen-Hans; Jacob M van Laar; Udo D J Mulder; Judith Potjewijd; Lian A J de Pundert; Thea H M Schoonbrood; Anne A Schouffoer; Alja J Stel; Ward Vercoutere; Alexandre E Voskuyl; Jeska K de Vries-Bouwstra; Madelon C Vonk Journal: Rheumatology (Oxford) Date: 2020-06-01 Impact factor: 7.580
Authors: Marie-Nicole Discepola; Andrea Carboni-Jiménez; Linda Kwakkenbos; Richard S Henry; Jill Boruff; Ankur Krishnan; Carina Boström; S Nicole Culos-Reed; Marie Hudson; David M Leader; Malin Mattsson; Luc Mouthon; Robyn Wojeck; Elizabeth Yakes Jimenez; Maureen Sauve; Joep Welling; Geneviève Guillot; Andrea Benedetti; Brett D Thombs Journal: BMJ Open Date: 2021-05-04 Impact factor: 2.692
Authors: Julia Spierings; Rita Schriemer; Sonja Dittmar; Lian de Pundert; Jeska de Vries-Bouwstra; Els van den Ende; Madelon Vonk Journal: J Scleroderma Relat Disord Date: 2020-09-10