Abstract
This thesis focuses on the development, implementation and evaluation of a patient-relevant standard set of outcome measures for patients with pulmonary sarcoidosis.
Part I. Health outcome measurement and quality improvement
Clinical registries function as an important tool to systematically measure and evaluate
clinical outcomes. In Chapter 2, we conducted a systematic review
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summarizing the results
of studies that use outcome measures from clinical registries to implement and monitor
quality improvement (QI) initiatives.
We concluded that clinical registries are supportive instruments in the
process of continuously improving the quality of care. However, a clinical registry can
only be successful in realizing QI efforts when there is commitment and leadership at both
the physician and manager level. In addition, there should be a benchmarking facility, a
well-integrated computerized system, and a collective (institutional) aim to identify best
practices in place.
Part II. Development and evaluation of the standard set of outcome measures for pulmonary sarcoidosis
For patients with pulmonary sarcoidosis no standard sets of outcome measures had
been developed yet. Therefore, in Chapter 3 we developed a consensus-driven, patient-centered standard set, enabling international comparison of clinical outcomes for patients
with pulmonary sarcoidosis. This standard set of outcome measures was developed in
collaboration with five sarcoidosis expert clinics. Seven outcomes and associated measures were identified: mortality (1 and 5 years), pulmonary function (FEV1, FVC, DLCOc), sIL-2R change as an activity biomarker, weight gain, quality of life (measured with the King’s Sarcoidosis Questionnaire and the Fatigue Assessment Scale), osteoporosis, and clinical outcome status (COS).
Next, in Chapter 4, we present the evaluation of the standard set of outcome measures. We showed that collecting data in a retrospective multicenter international cohort is feasible for the outcomes mortality, pulmonary function, weight changes and COS. Conversely, it was not (yet) feasible to collect data for international comparisons on QoL, sIL-2R and osteoporosis.
Part III. Implementation of best practice & costs
In Chapter 5, we identified cost-related information and described characteristics of
200 patients with sarcoidosis in a Dutch patient cohort using administrative data. The
mean overall healthcare costs of the top 1% patients with sarcoidosis were 22 times
higher compared to that of the random sample of the bottom 95% (€108.296 vs. €4.817,
respectively).
Efforts to further improve the quality of care and clinical outcomes for patients with sarcoidosis could specifically target the most expensive patients, which can potentially reduce the overall costs.
In Chapter 6, we identified an improvement intervention that was selected after evaluating
the standard set of outcome measures presented in Chapter 4. We found that patients with
long-term prednisone use had a higher BMI and that their BMI increased more compared
to patients using prednisone for a shorter time, which was also known from the literature.
Therefore, we developed, implemented and evaluated a new prednisone protocol for
patients with sarcoidosis. The new prednisone protocol included a conservative regimen and was reduced to receiving 20 mg at start as the golden standard in the clinic from the 1st of September 2017 onwards.
The collected outcome data support the observation that a more conservative prednisone regimen might be equally effective.
CONCLUSIONS
In conclusion, this thesis has provided evidence that VBHC principles can be applied
in hospitals treating patients with pulmonary sarcoidosis. We have developed a
standard set of outcome measures that can be used to compare clinical outcomes of
different sarcoidosis centers.
Finally, the collected outcome data support the observation that a more conservative prednisone regimen might be equally effective in treating the inflammation while maintain quality of life and reducing side-effects.
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