Tranzo Pearl | Quality Indicators

People with Down syndrome often face a variety of health problems. It is, therefore, especially important for them that the care they receive is of good quality. Quality indicators (QIs) can help improve the quality of care.

Development of quality indicators

QIs are measurable and carefully defined components of health care that provide insight into the quality of health care. To develop these indicators, topics were collected from people with Down syndrome, their parents, caregivers, patient organizations, and health care providers. These can be divided into three themes: Effectiveness (such as timely recognition and treatment of health complaints); Organization of Care (such as good coordination of all caregivers involved) and Person-Centeredness (is the caregiver looking closely at what this person with Down syndrome needs?). In Francine van den Driessen Mareeuw’s PhD research, indicators were drawn up for each theme (46 in total). In addition, the research also provides insight into the role that care plays in the lives of people with Down syndrome.

The importance of quality indicators

QIs can provide clues to healthcare reforms, inform clinical decisions, and help patients find needed care. Indicators that provide insight into health care for people with Down syndrome were scarce. This study established an empirical basis and a first draft of such indicators. It also provides practical recommendations for the further development and actual use of QIs in healthcare practice.

Further development and implementation of quality indicators

The 46 indicators from the study reflect the total package of care that people with Down syndrome may need. In practice, it will probably not be possible to implement all the indicators at once. Therefore, the study recommends, for example, first checking whether the information to be collected for the indicators is already in registration systems. Data experts can easily extract this information and make it usable. This way, healthcare providers do not have to enter additional data into the systems. Healthcare providers could also be given the opportunity to choose which indicators they use. They could then choose different ones each year, for example. Or they could choose indicators that deal with topics they want to improve.

Broader perspective

Not only quality indicators are important for improving quality of life. We need to see this in a broader perspective and also look at the context in which people with Down syndrome live. The thesis concludes that QIs that provide insight into the themes mentioned are important to improve health care for people with Down syndrome. It is recommended that the indicators be part of a broader package of healthcare innovations.