What does pediatric palliative care really look like and how do we make its quality measurable? These are the central questions in the EKO study that will start soon. Judith Aris and Renée Mulder are involved in this 3-year study as senior researchers. “The ultimate goal is to make the quality of pediatric palliative care as high as possible.”

“EKO stands for Epidemiology and Quality of Care and Organization for children in palliative care,” says Judith Aris, senior researcher at the Beatrix Children's Hospital in Groningen. “At the moment it is not clear how many children receive palliative care, what that group looks like and whether we are structurally missing children who would benefit from this form of care.”

“In addition, it is unclear which points healthcare providers and hospitals must meet in order to provide good pediatric palliative care,” says Renée Mulder, guideline specialist and senior researcher at the Princess Máxima Center for pediatric oncology. “There is no overview of characteristics of good care and patient-relevant outcomes.”

The EKO study consists of EKO 1 and EKO 2 and is funded by ZonMw. This allows one PhD candidate to start at UMC Groningen for EKO 1 (in the group of professor Eduard Verhagen, in collaboration with dr. Carine van Capelle at Erasmus MC) and one PhD candidate at the Princess Máxima Center for pediatric oncology (in the group of professor Leontien Kremer) for EKO 2. This involves close collaboration with pediatricians and researchers from the Kinder Comfort Teams, with the Knowledge Center for Pediatric Palliative Care, the Child and Hospital Foundation, the BINKZ and the Association for Children's Cancer NL.

EKO 1: the numbers in pictures

Judith: “With EKO 1 we are trying to gain insight into what the group of children within pediatric palliative care looks like. How many children and what conditions are involved? And what care do they receive when we talk about palliative care? We are investigating this by going through care files of the UMCs. Because we suspect that there is also a group of children who are not known in a UMC, we are also doing a random sample at several general hospitals.”

“We look at which children have a life-threatening or life-shortening condition or a condition for which the child could receive palliative care. In this way, we gain insight into how many of these children actually end up in a palliative care structure. And also: do we see a pattern in the children who – wrongly – do not end up in that care structure?”

Children who have died are also included in the study, says Judith. In these cases, it is examined what the care looked like from diagnosis to death. Are there differences in the number of admissions and the length of stay? What was the number of procedures in the last year and was there a difference in treatment limits?

EKO 2: determining quality indicators

Renée: “Within EKO 2 we are looking for quality indicators for children's palliative care. Quality indicators are measurable elements with which the quality of care can be measured and thus improved. Based on the 'Guideline palliative care for children' we want to develop process, structure and outcome indicators. With this we want to make the quality of children's palliative care measurable.”

Within EKO 2, literature research is conducted and experts are consulted on existing quality indicators and sets of outcomes in palliative care. During a meeting, patient representatives are also asked what they think are characteristics of good pediatric palliative care and what they think are potentially relevant patient outcomes.

“In addition, within the guideline 'palliative care for children' we will search for possible care processes, care structures and patient outcomes and we will distribute a questionnaire among care providers,” Renée adds. “We will start broadly, to collect as much information as possible. We will present this information to experts in this field by means of so-called Delphi questionnaires. We ask them to prioritize all the collected information, so that we arrive at the quality indicators.”

“By creating insight now, we will ultimately improve the quality of care, the quality of life and the quality of dying.”

Insight into numbers, quality level and improvement opportunities

“Thanks to the EKO study, we will soon be able to say with more certainty how many children receive palliative care each year,” says Judith. “It also teaches us how many children die each year from something for which they could have received palliative care and which children are structurally out of sight. With this information, we will recognize earlier in the future when a child is eligible for palliative care. By creating insight now, we will ultimately improve the quality of care, the quality of life and the quality of dying.”

Renée: “Once we have the quality indicators in view, the quality of pediatric palliative care will soon be measurable. This will give medical centers insight into their own progress over time and they can compare their results with other institutes. This provides starting points to further improve the quality of care.”