19 research outputs found
Results of the standard set forpulmonary sarcoidosis: Feasibility and multicentre outcomes
Our study presents findings on a previously developed standard set of clinical outcome data for pulmonary sarcoidosis patients. We aimed to assess whether changes in outcome varied between the different centres and to evaluate the feasibility of collecting the standard set retrospectively. This retrospective observational comparative benchmark study included six interstitial lung disease expert centres based in the Netherlands, Belgium, the UK and the USA. The standard set of outcome measures included 1) mortality, 2) changes in pulmonary function (forced vital capacity (FVC), forced expiratory volume in 1 s, diffusing capacity of the lung for carbon monoxide), 3) soluble interleukin-2 receptor (sIL-2R) change, 4) weight changes, 5) quality-of-life (QoL) measures, 6) osteoporosis and 7) clinical outcome status (COS). Data collection was considered feasible if the data were collected in ⩾80% of all patients. 509 patients were included in the retrospective cohort. In total six patients died, with a mean survival of 38±23.4 months after the diagnosis. Centres varied in mean baseline FVC, ranging from 110 (95% CI 92–124)% predicted to 99 (95% CI 97–123)% pred. Mean baseline body mass index (BMI) of patients in the different centres varied between 27 (95% CI 23.6–29.4) kg·m−2 and 31.8 (95% CI 28.1–35.6) kg·m−2. 310 (60.9%) patients were still on systemic therapy 2 years after the diagnosis. It was feasible to measure mortality, changes in pulmonary function, weight changes and COS. It is not (yet) feasible to retrospectively collect sIL-2R, osteoporosis and QoL data internationally. This study shows that data collection for the standard set of outcome measures for pulmonary sarcoidosis was feasible for four out of seven outcome measures. Trends in pulmonary function and BMI were similar for different hospitals when comparing different practices
First patient-centred set of outcomes for pulmonary sarcoidosis: a multicentre initiative
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 valuebased healthcare principles.
Methods Six expert clinics for interstitial lung diseases in
four countries participated in a consensus-driven RANDmodified 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
Results of the standard set for pulmonary sarcoidosis: feasibility and multicentre outcomes
Contains fulltext :
215519.pdf (publisher's version ) (Open Access)Our study presents findings on a previously developed standard set of clinical outcome data for pulmonary sarcoidosis patients. We aimed to assess whether changes in outcome varied between the different centres and to evaluate the feasibility of collecting the standard set retrospectively. This retrospective observational comparative benchmark study included six interstitial lung disease expert centres based in the Netherlands, Belgium, the UK and the USA. The standard set of outcome measures included 1) mortality, 2) changes in pulmonary function (forced vital capacity (FVC), forced expiratory volume in 1 s, diffusing capacity of the lung for carbon monoxide), 3) soluble interleukin-2 receptor (sIL-2R) change, 4) weight changes, 5) quality-of-life (QoL) measures, 6) osteoporosis and 7) clinical outcome status (COS). Data collection was considered feasible if the data were collected in >/=80% of all patients. 509 patients were included in the retrospective cohort. In total six patients died, with a mean survival of 38+/-23.4 months after the diagnosis. Centres varied in mean baseline FVC, ranging from 110 (95% CI 92-124)% predicted to 99 (95% CI 97-123)% pred. Mean baseline body mass index (BMI) of patients in the different centres varied between 27 (95% CI 23.6-29.4) kg.m(-2) and 31.8 (95% CI 28.1-35.6) kg.m(-2). 310 (60.9%) patients were still on systemic therapy 2 years after the diagnosis. It was feasible to measure mortality, changes in pulmonary function, weight changes and COS. It is not (yet) feasible to retrospectively collect sIL-2R, osteoporosis and QoL data internationally. This study shows that data collection for the standard set of outcome measures for pulmonary sarcoidosis was feasible for four out of seven outcome measures. Trends in pulmonary function and BMI were similar for different hospitals when comparing different practices