Publication

How do patients with systemic sclerosis experience currently provided healthcare and how should we measure its quality?

Spierings, J., van den Ende, C. H. M., Schriemer, R. M., Moens, H. J. B., van der Bijl, E. A., Bonte-Mineur, F., de Buck, M. P. D., de Kanter, M. A. E., Knaapen-Hans, H. K. A., van Laar, J. M., Mulder, DJ., Potjewijd, J., de Pundert, L. A. J., Schoonbrood, T. H. M., Schouffoer, A. A., Stel, A. J., Vercoutere, W., Voskuyl, A. E., de Vries-Bouwstra, J. K. & Vonk, M. C., 20-Sep-2019, In : Rheumatology.

Research output: Contribution to journalArticleAcademicpeer-review

APA

Spierings, J., van den Ende, C. H. M., Schriemer, R. M., Moens, H. J. B., van der Bijl, E. A., Bonte-Mineur, F., ... Vonk, M. C. (2019). How do patients with systemic sclerosis experience currently provided healthcare and how should we measure its quality? Rheumatology. https://doi.org/10.1093/rheumatology/kez417

Author

Spierings, Julia ; van den Ende, Cornelia H M ; Schriemer, Rita M ; Moens, Hein J Bernelot ; van der Bijl, Egon A ; Bonte-Mineur, Femke ; de Buck, Marieke P D ; de Kanter, Meeke A E ; Knaapen-Hans, Hanneke K A ; van Laar, Jacob M ; Mulder, DJ ; Potjewijd, Judith ; de Pundert, Lian A J ; Schoonbrood, Thea H M ; Schouffoer, Anne A ; Stel, Alja J ; Vercoutere, Ward ; Voskuyl, Alexandre E ; de Vries-Bouwstra, Jeska K ; Vonk, Madelon C. / How do patients with systemic sclerosis experience currently provided healthcare and how should we measure its quality?. In: Rheumatology. 2019.

Harvard

Spierings, J, van den Ende, CHM, Schriemer, RM, Moens, HJB, van der Bijl, EA, Bonte-Mineur, F, de Buck, MPD, de Kanter, MAE, Knaapen-Hans, HKA, van Laar, JM, Mulder, DJ, Potjewijd, J, de Pundert, LAJ, Schoonbrood, THM, Schouffoer, AA, Stel, AJ, Vercoutere, W, Voskuyl, AE, de Vries-Bouwstra, JK & Vonk, MC 2019, 'How do patients with systemic sclerosis experience currently provided healthcare and how should we measure its quality?', Rheumatology. https://doi.org/10.1093/rheumatology/kez417

Standard

How do patients with systemic sclerosis experience currently provided healthcare and how should we measure its quality? / Spierings, Julia; van den Ende, Cornelia H M; Schriemer, Rita M; Moens, Hein J Bernelot; van der Bijl, Egon A; Bonte-Mineur, Femke; de Buck, Marieke P D; de Kanter, Meeke A E; Knaapen-Hans, Hanneke K A; van Laar, Jacob M; Mulder, DJ; Potjewijd, Judith; de Pundert, Lian A J; Schoonbrood, Thea H M; Schouffoer, Anne A; Stel, Alja J; Vercoutere, Ward; Voskuyl, Alexandre E; de Vries-Bouwstra, Jeska K; Vonk, Madelon C.

In: Rheumatology, 20.09.2019.

Research output: Contribution to journalArticleAcademicpeer-review

Vancouver

Spierings J, van den Ende CHM, Schriemer RM, Moens HJB, van der Bijl EA, Bonte-Mineur F et al. How do patients with systemic sclerosis experience currently provided healthcare and how should we measure its quality? Rheumatology. 2019 Sep 20. https://doi.org/10.1093/rheumatology/kez417


BibTeX

@article{40dadb5cf51a47aaac3f0c70c890037a,
title = "How do patients with systemic sclerosis experience currently provided healthcare and how should we measure its quality?",
abstract = "OBJECTIVES: To gain insight into SSc patients' perspective on quality of care and to survey their preferred quality indicators.METHODS: An online questionnaire about healthcare setting, perceived quality of care (CQ index) and quality indicators, was sent to 2093 patients from 13 Dutch hospitals.RESULTS: Six hundred and fifty patients (mean age 59 years, 75{\%} women, 32{\%} limited cutaneous SSc, 20{\%} diffuse cutaneous SSc) completed the questionnaire. Mean time to diagnosis was 4.3 years (s.d. 6.9) and was longer in women compared with men (4.8 (s.d. 7.3) vs 2.5 (s.d. 5.0) years). Treatment took place in a SSc expert centre for 58{\%}, regional centre for 29{\%} or in both for 39{\%} of patients. Thirteen percent of patients was not aware of whether their hospital was specialized in SSc. The perceived quality of care was rated with a mean score of 3.2 (s.d. 0.5) (range 1.0-4.0). There were no relevant differences between expert and regional centres. The three prioritized process indicators were: good patient-physician interaction (80{\%}), structural multidisciplinary collaboration (46{\%}) and receiving treatment according to SSc guidelines (44{\%}). Absence of disease progression (66{\%}), organ involvement (33{\%}) and digital ulcers (27{\%}) were the three highest rated outcome indicators.CONCLUSION: The perceived quality of care evaluated in our study was fair to good. No differences between expert and regional centres were observed. Our prioritized process and outcome indicators can be added to indicators suggested by SSc experts in earlier studies and can be used to evaluate the quality of care in SSc.",
author = "Julia Spierings and {van den Ende}, {Cornelia H M} and Schriemer, {Rita M} and Moens, {Hein J Bernelot} and {van der Bijl}, {Egon A} and Femke Bonte-Mineur and {de Buck}, {Marieke P D} and {de Kanter}, {Meeke A E} and Knaapen-Hans, {Hanneke K A} and {van Laar}, {Jacob M} and DJ Mulder and Judith Potjewijd and {de Pundert}, {Lian A J} and Schoonbrood, {Thea H M} and Schouffoer, {Anne A} and Stel, {Alja J} and Ward Vercoutere and Voskuyl, {Alexandre E} and {de Vries-Bouwstra}, {Jeska K} and Vonk, {Madelon C}",
note = "{\circledC} The Author(s) 2019. Published by Oxford University Press on behalf of the British Society for Rheumatology. All rights reserved. For permissions, please email: journals.permissions@oup.com.",
year = "2019",
month = "9",
day = "20",
doi = "10.1093/rheumatology/kez417",
language = "English",
journal = "Rheumatology",
issn = "1462-0324",
publisher = "Oxford University Press",

}

RIS

TY - JOUR

T1 - How do patients with systemic sclerosis experience currently provided healthcare and how should we measure its quality?

AU - Spierings, Julia

AU - van den Ende, Cornelia H M

AU - Schriemer, Rita M

AU - Moens, Hein J Bernelot

AU - van der Bijl, Egon A

AU - Bonte-Mineur, Femke

AU - de Buck, Marieke P D

AU - de Kanter, Meeke A E

AU - Knaapen-Hans, Hanneke K A

AU - van Laar, Jacob M

AU - Mulder, DJ

AU - Potjewijd, Judith

AU - de Pundert, Lian A J

AU - Schoonbrood, Thea H M

AU - Schouffoer, Anne A

AU - Stel, Alja J

AU - Vercoutere, Ward

AU - Voskuyl, Alexandre E

AU - de Vries-Bouwstra, Jeska K

AU - Vonk, Madelon C

N1 - © The Author(s) 2019. Published by Oxford University Press on behalf of the British Society for Rheumatology. All rights reserved. For permissions, please email: journals.permissions@oup.com.

PY - 2019/9/20

Y1 - 2019/9/20

N2 - OBJECTIVES: To gain insight into SSc patients' perspective on quality of care and to survey their preferred quality indicators.METHODS: An online questionnaire about healthcare setting, perceived quality of care (CQ index) and quality indicators, was sent to 2093 patients from 13 Dutch hospitals.RESULTS: Six hundred and fifty patients (mean age 59 years, 75% women, 32% limited cutaneous SSc, 20% diffuse cutaneous SSc) completed the questionnaire. Mean time to diagnosis was 4.3 years (s.d. 6.9) and was longer in women compared with men (4.8 (s.d. 7.3) vs 2.5 (s.d. 5.0) years). Treatment took place in a SSc expert centre for 58%, regional centre for 29% or in both for 39% of patients. Thirteen percent of patients was not aware of whether their hospital was specialized in SSc. The perceived quality of care was rated with a mean score of 3.2 (s.d. 0.5) (range 1.0-4.0). There were no relevant differences between expert and regional centres. The three prioritized process indicators were: good patient-physician interaction (80%), structural multidisciplinary collaboration (46%) and receiving treatment according to SSc guidelines (44%). Absence of disease progression (66%), organ involvement (33%) and digital ulcers (27%) were the three highest rated outcome indicators.CONCLUSION: The perceived quality of care evaluated in our study was fair to good. No differences between expert and regional centres were observed. Our prioritized process and outcome indicators can be added to indicators suggested by SSc experts in earlier studies and can be used to evaluate the quality of care in SSc.

AB - OBJECTIVES: To gain insight into SSc patients' perspective on quality of care and to survey their preferred quality indicators.METHODS: An online questionnaire about healthcare setting, perceived quality of care (CQ index) and quality indicators, was sent to 2093 patients from 13 Dutch hospitals.RESULTS: Six hundred and fifty patients (mean age 59 years, 75% women, 32% limited cutaneous SSc, 20% diffuse cutaneous SSc) completed the questionnaire. Mean time to diagnosis was 4.3 years (s.d. 6.9) and was longer in women compared with men (4.8 (s.d. 7.3) vs 2.5 (s.d. 5.0) years). Treatment took place in a SSc expert centre for 58%, regional centre for 29% or in both for 39% of patients. Thirteen percent of patients was not aware of whether their hospital was specialized in SSc. The perceived quality of care was rated with a mean score of 3.2 (s.d. 0.5) (range 1.0-4.0). There were no relevant differences between expert and regional centres. The three prioritized process indicators were: good patient-physician interaction (80%), structural multidisciplinary collaboration (46%) and receiving treatment according to SSc guidelines (44%). Absence of disease progression (66%), organ involvement (33%) and digital ulcers (27%) were the three highest rated outcome indicators.CONCLUSION: The perceived quality of care evaluated in our study was fair to good. No differences between expert and regional centres were observed. Our prioritized process and outcome indicators can be added to indicators suggested by SSc experts in earlier studies and can be used to evaluate the quality of care in SSc.

U2 - 10.1093/rheumatology/kez417

DO - 10.1093/rheumatology/kez417

M3 - Article

JO - Rheumatology

JF - Rheumatology

SN - 1462-0324

ER -

ID: 101574722