After a trajectory of almost 5 years I finished my thesis about the development and evaluation of the Assessment of Burden of COPD tool (in Dutch: Ziektelastmeter COPD). When I started my project I wasn’t even sure if there was going to be a project. The Dutch Lung Alliance installed an expert group with the assignment: develop and evaluate a tool that can measure experienced burden of COPD. I was invited into this expert group as a PhD student, to work out all the ideas that the expert team came up with during meetings. The expert team was a national team of experts, from Groningen to Maastricht and from Leiden/Rotterdam to Nijmegen. A versatile team, which was very impressive for me as a first year to be part of. My first assignment was: perform a literature study to make sure there is not yet an instrument available in literature that measures experienced burden of disease. If I would find an instrument, this would mean that there was no need to develop another instrument. But this would also mean that there would be no project for me to work on as a PhD student. As you might have guessed, the literature review showed that there was no instrument available yet. So, we started with the development of the tool, defining burden of disease, setting conditions an instrument should meet, make sure we comply with the ideas of patients and healthcare providers, and eventually developing a questionnaire and a computer program with a visual display and a treatment algorithm. We called this new instrument, the Assessment of Burden of COPD (ABC) tool. It was a difficult process to include all relevant elements, but still make sure the tool is usable and feasible in daily care. After the development process we also had to evaluate the effectiveness of the tool. Therefore, we had to write a research protocol. We evaluated the tool with a large cluster randomised controlled trial. We found that in the group who used the ABC tool in daily care, significantly more patients experienced a clinically relevant improvement in experienced quality of life. Furthermore, the patients in the intervention group had a better evaluation of their experienced quality of care. Based on these findings, the Dutch Lung Alliance decided to start an implementation process, aiming at a nationwide implementation of the ABC tool.
Working on a project with such a high impact on COPD care is very impressive and inspiring. At no point in my trajectory I had doubts or thoughts about quitting. My PhD project is finished, but the ABC tool is not finished. We are currently implementing the tool in daily care and I am working as a post-doc researcher to evaluate the possibilities of expanding the ABC tool in a tool that can also be used in patients with asthma and diabetes.
My PhD project offered me many possibilities to expand my network, work with many experts, develop personal and work-related skills, and finally contribute to the healthcare in the Netherlands.
I would like to finish with a proposition I included in my thesis, which I think is suitable in many different situations: “People are generally better persuaded by the reasons which they have themselves discovered, than by those which have come from the mind of others.” (Blaise Pascal)