TY - JOUR
T1 - First patient-centred set of outcomes for pulmonary sarcoidosis
T2 - A multicentre initiative
AU - Kampstra, Nynke A.
AU - Grutters, Jan C.
AU - Van Beek, Frouke T.
AU - Culver, Daniel A.
AU - Baughman, Robert P.
AU - Renzoni, Elisabetta A.
AU - Wuyts, Wim
AU - Kouranos, Vaslis
AU - Wijsenbeek, Marlies S.
AU - Biesma, Douwe H.
AU - Van Der Wees, Philip J.
AU - Van Der Nat, Paul B.
N1 - Funding Information:
Acknowledgements We thank the sarcoidosis patient association (SBN) for the research grant awarded in 2016 for this project. We would like to thank Dr Wim F van den Bosch for his help at the start of this study, who worked as a senior advisor at the quality and safety department at the St. Antonius Hospital (Nieuwegein, the Netherlands). Furthermore, we would like to thank Dr Bernt van den Blink for his helpful input during the start of the study, during which he worked as a pulmonologist at the Erasmus Medical Center (Rotterdam, the Netherlands).
Publisher Copyright:
© Author(s) (or their employer(s)) 2019.
PY - 2019/2/1
Y1 - 2019/2/1
N2 - Introduction Routine and international comparison of clinical outcomes enabling identification of best practices for patients with pulmonary sarcoidosis is lacking. The aim of this study was to develop a standard set of outcome measures for pulmonary sarcoidosis, using the value-based healthcare principles. Methods Six expert clinics for interstitial lung diseases in four countries participated in a consensus-driven RAND-modified Delphi study. A mixed-method approach was applied for the identification of an outcome measures set and initial conditions for patients with pulmonary sarcoidosis. The expert team consisted of multidisciplinary professionals (n=14) from Cleveland Clinic, Cincinnati MC, Erasmus MC, Leuven UZ, Royal Brompton and St. Antonius Hospital. During a ranking process, participants were instructed to rank variables on a scale from 1 to 10 based on whether it has (1) impact of the outcome on quality of life, (2) impact of quality of care on the outcome and (3) the number of patients negatively affected by the outcome. Results An outcome measures set was defined consisting of seven outcome measures: Mortality, pulmonary function, soluble interleukin-2 receptor change as an activity biomarker, weight gain, quality of life, osteoporosis and clinical outcome status. Discussion Collecting outcomes in pulmonary sarcoidosis internationally and the use of a broadly accepted set can enable international comparison. Differences in outcomes can potentially be used as a starting point for quality improvement initiatives.
AB - Introduction Routine and international comparison of clinical outcomes enabling identification of best practices for patients with pulmonary sarcoidosis is lacking. The aim of this study was to develop a standard set of outcome measures for pulmonary sarcoidosis, using the value-based healthcare principles. Methods Six expert clinics for interstitial lung diseases in four countries participated in a consensus-driven RAND-modified Delphi study. A mixed-method approach was applied for the identification of an outcome measures set and initial conditions for patients with pulmonary sarcoidosis. The expert team consisted of multidisciplinary professionals (n=14) from Cleveland Clinic, Cincinnati MC, Erasmus MC, Leuven UZ, Royal Brompton and St. Antonius Hospital. During a ranking process, participants were instructed to rank variables on a scale from 1 to 10 based on whether it has (1) impact of the outcome on quality of life, (2) impact of quality of care on the outcome and (3) the number of patients negatively affected by the outcome. Results An outcome measures set was defined consisting of seven outcome measures: Mortality, pulmonary function, soluble interleukin-2 receptor change as an activity biomarker, weight gain, quality of life, osteoporosis and clinical outcome status. Discussion Collecting outcomes in pulmonary sarcoidosis internationally and the use of a broadly accepted set can enable international comparison. Differences in outcomes can potentially be used as a starting point for quality improvement initiatives.
KW - outcomes
KW - pulmonary sarcoidosis
KW - value-based healthcare
UR - http://www.scopus.com/inward/record.url?scp=85061961080&partnerID=8YFLogxK
U2 - 10.1136/bmjresp-2018-000394
DO - 10.1136/bmjresp-2018-000394
M3 - Article
AN - SCOPUS:85061961080
VL - 6
JO - BMJ open respiratory research
JF - BMJ open respiratory research
IS - 1
M1 - e000394
ER -