Project “Value based healthcare in pulmonary sarcoidosis”

Op 11 Mei 2017 wint Santeon (7 Top-klinische ziekenhuizen, waaronder St. Antoniusziekenhuis) voor 2e keer VBHC Collaboration Award. Het project “Value based healthcare in pulmonary sarcoidosis” is een voorbeeld van deze samenwerking binnen de Santeon ziekenhuizen en ziekenhuizen en partijen buiten Santeon. (link en zie ook vbhc website)

Value-based healthcare in pulmonary sarcoidosis

Despite advances since sarcoidosis was first described, much remains unknown regarding the aetiology of the disease. Due to the heterogeneous clinical manifestation, treatment can vary from no treatment to thorough follow-up with a variety of medications. The appropriate treatment for pulmonary sarcoidosis patients has not been well defined (Costabel et al. 1999). As stated in the Sarcoidosis Statement Committee, the symptoms that need corticosteroid therapy remain controversial. In order to tailor treatment well to the individual level, the availability of centre-specific outcome data has the potential to provide important advantages for quality improvement efforts.

The standard outcome set was designed specifically for pulmonary sarcoidosis patients. In order to be able to compare treatment outcomes among hospitals, not only the outcome measure and initial conditions need to be defined, but also a clear and uniform definition of the patient population itself is needed. The patient group is defined in line with the joint statement on sarcoidosis (Costabel et al. 1999). The international team acknowledges sarcoidosis is a very heterogeneous population. Therefore, it was decided there has to be pulmonary involvement, as 90 percent of sarcoidosis patients show pulmonary involvement. Specifically, the patient has to be: 1) Diagnosed with pulmonary sarcoidosis. 2) The diagnosis has to be performed by a pulmonologist (based on the joint statement on sarcoidosis) and 3) Extra-pulmonary sarcoidosis is not excluded. Lees verder…

Nynke Kampstra was born on February 26th, 1988, in Leeuwarden, The Netherlands. She studied Nutrition for her BSc and finished her two-year Master’s programme Public Health & Society at the Wageningen University in 2014. During her studies she worked at the World Health Organization (WHO) headquarters for her thesis project. For her internship and a consultancy period, Nynke worked with the World Food Programme (WFP), where she conducted and implemented research in Burkina Faso studying the effect of increased energy density of porridges on total energy and nutrient intake in young infants.

Nynke Kampstra started her four-year PhD research project at the ILD Center of Excellence, Department of Pulmonology,  St. Antonius Hospital, Nieuwegein, The Netherlands in February 2015, with prof. dr. Jan Grutters, prof. dr. Douwe Biesma, dr. Paul van der Nat and dr.Philip van der Wees as her supervisors. Her research project is titled: ‘Value-based health care (VBHC) in pulmonary sarcoidosis’, funded by ZonMw. The aim of the study is to investigate whether with steering on health outcomes improvement of the management of pulmonary sarcoidosis patients can be achieved (defined as outcomes relative to costs) and, if so, how the use of outcomes measures should be implemented within hospitals. In addition to the ILD Center of Excellence, St. Antonius Hospital, five other centers of expertise are participating: the Cleveland Clinic (USA ), the Erasmus Medical Center (Netherlands), Royal Brompton Hospital (UK), the University of Cincinnati Medical Center (USA ) and the University Hospital Leuven (Belgium). In 2015 she received the ‘Research Support 2016’ grant from the Dutch Sarcoidosis Patients Society (Sarcoïdose Belangenvereniging Nederland) to support the research-project mentioned before.  In September 2016 she started with the Postgraduate Epidemiology Master at the Utrecht University, a Master’s programme for PhD candidates.

Nederlandse samenvatting:

Het onderzoeksproject value-based healthcare (VBHC) in pulmonale sarcoïdose is genomineerd voor de VBHC-prijs. De VBHC-prijs beloont de projecten die een fundamenteel nieuwe denkwijze hebben en toegevoegde waarde voor patiënten creëren. Elk jaar wordt aan een excellent initiatief de VBHC-prijs toegekend, een prestigieuze prijs die op vele manieren het initiatief stimuleert. De VBHC-prijswinnaar wordt geselecteerd door een gerenommeerde jury, en wordt op 11 mei door Harvard professor Michael Porter uitgereikt.

Het onderzoeksproject streeft naar het vergelijken van behandelingsresultaten voor pulmonale sarcoïdose patiënten. Deelnemende ziekenhuizen verzamelen en bespreken de uitkomsten met het oog op het identificeren van ‘best practices’. De studie is geïnitieerd door prof. dr. Jan Grutters, longarts en hoofd van het ILD Expertisecentrum,  St. Antonius Ziekenhuis, te Nieuwegein. Een internationaal team van longartsen met toonaangevende expertise op het gebied van pulmonale sarcoïdose is samengesteld. Naast het ILD Expertisecentrum zijn er vijf andere expertisecentra die meedoen: Cleveland Clinic Cleveland, (USA), Erasmus Medisch Centrum, Rotterdam (Nederland), Royal Brompton Hospital, Londen (UK), the University of Cincinnati Medical Center, Cincinatti (USA) en Universitaire Ziekenhuizen Leuven (België). Het onderzoek wordt gefinancierd door ZonMw (Experiment TopZorg). Nynke Kampstra is in februari 2015 begonnen met haar studie in het ILD Expertisecentrum. Haar supervisors zijn prof. dr. Jan Grutters, prof. dr. Douwe Biesma, dr. Paul van der Nat en dr. Philip van der Wees. Deze studie staat geregistreerd onder dossier nummer 80-84200-98-14103.


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