“It’s so important to involve patients in this type of research”

I-HARP is a tool to help healthcare providers timely identify and address the palliative care needs of people with heart failure. CAPHRI is currently conducting research aimed at adapting I-HARP to a similar tool for people with COPD. “It’s so important to involve patients and their families in this type of research”, says Mariëtte Simons.

As a person with heart failure, she was closely involved in the development of I-HARP. The tool was designed for people with severe forms of heart failure. They live with symptoms such as shortness of breath and fatigue and have an uncertain life expectancy. As their condition gradually worsens, they become increasingly dependent on care and their world becomes smaller. Treatment of patients with heart failure tends to focus on the physical/medical aspects of care. I-HARP helps healthcare providers timely recognise whether these patients would benefit from palliative care.

"Many people associate palliative care with terminal care, but that’s not what this research project is about”, explains project leader Daisy Janssen, professor in old age medicine. “The tool empowers healthcare providers to start a conversation about a patient’s need for care that improves their quality of life. In other words, what does the patient need to feel better? It’s about much more than just physical symptoms. I-HARP is an accessible way to help healthcare providers ask questions about things like the impact of a patient’s disease on their mental health, social life and sense of purpose. This varies from person to person”, says the professor, who specialises in personalised care for people with advanced chronic organ failure. I-HARP consists of three parts. The first part contains a number of open-ended questions to start the conversation and close-ended questions to identify the need for palliative care. The second part contains suggestions for additional questions. Finally, the third part contains tips and advice to address the care needs identified.

Equal member

Mariëtte Simons suffers from heart failure, which runs in her family. She was approached to become involved in the I-HARP research project when she was a member of the Patient’s Advisory Board at Harteraad, the Dutch centre of expertise for people living with cardiovascular disease. She finds it very important that doctors or other healthcare providers timely raise the subject of palliative care needs with persons with heart failure. “That’s why I wanted to participate in the study. I know from experience that what the doctor thinks is important for a patient often differs from what the patient thinks. On top of that, doctors can be fascinated by the heart itself, but they also need to see the patient as a human being.”

The tool was not only developed in partnership with patients and their families, but also tested by them. “I tested it, too”, says Mariëtte Simons. “I really felt like an equal member of the research team. I was a good match with Stephanie Ament, a researcher involved in the project. She and I also provided workshops on I-HARP for healthcare providers, such as nurses, together.” Daisy Janssen nods. “Stephanie went into the project with an open mind. She was not biased by any preconceived notion of what the tool should look like. She was receptive to the ideas of people with heart failure.”

The project resulted in a great tool, says Mariëtte Simons. “It facilitates in-depth conversations about all kinds of topics. The tool also meets the needs of the diverse patient population.” A research project to adapt I-HARP for people with chronic obstructive pulmonary disease (COPD) was initiated last year in collaboration with nurse and nurse scientist Daniël Huijten at Zuyderland Medical Center, with funding from the Dutch Foundation for Asthma Prevention. “As with persons with heart failure, the disease trajectory of persons with COPD is unpredictable and the prognosis is uncertain. Persons with COPD do tend to be a bit younger, which means they have other concerns. These differences will be reflected in the tool”, says Daisy. Stephanie, now staff adviser person-centred care at the Maastricht University Medical Centre+, will advise on the project.

Finally, Daisy says that she and the Centre of Expertise for Palliative Care also plan to study how best to implement these tools, and what impact they have on patients and their families, healthcare providers and healthcare costs. “I don’t think we should develop a new tool for each disease, though. It would be better to develop a generic tool with specific questions for specific diseases.”

Text: Karin Burhenne
Translation: Emdash