What Do Patients Want To Know About Their Disease?

As the chair of the Heart & Lung patient organization in Sweden, I organize monthly meetings with patients and provide lectures with information about their diseases.

A year ago I was at a conference called EuroHeartCare (Conference for Cardiovascular Nurses and Allied Professionals) and at that conference a physiotherapist asked me how I know what kind of lectures these patients want. She asked if I actually asked them. Unfortunately, I had to answer that I decided myself what kind of lectures these patients received and I never asked them what they wanted to know. The Physiotherapist told me that they started a research called learning cafés, where they ask patients what information they want. Based on these answers they invited professionals to answer those questions.

When I came home, I was inspired and sent all the patients in the organization an invitation to come with their significant others and discuss what kind of questions they have on their diseases and what kind of information they would like.
I have to admit, I thought I knew the questions they had, but I couldn’t have been more wrong. To my surprise, there was need for other information about heart failure, then I provided. The biggest questions were about sleep, food, and physical activity:
“I am sleeping very bad, what can I do to improve this?”
“If I am sleepy during daytime, what is the best thing to do?”
“Is it true that patients with heart failure are more tired than elderly without this disease?”
“Is it possible to change my diet, so I am not that tired?”
“Is there medication to help with my endurance?”
“I heard that I can’t eat broccoli or strawberries, is this true?”
“Is it okay to take diuretic pills later in the evening if I go out for dinner with my family, without going to the bathroom that often?”
“Is it true that I can’t drink more than 2 liters a day?”
“Is there a limit in how much kcal I can eat a day now I have heart failure?”
“Is it only safe to go to the gym (rehab) or walk to be physically active, or are there more ways of physical activity that are safe?”
“If I am short of breath, how do I know if this is because of my heart failure or because of my COPD?”
Based on these questions, I now invited researchers to the organization to answer those questions and we organized different ways in being physically active, like exergaming (being physically active by a video game) and medical yoga. For the next meetings, I sent out the program and asked if the patients could give suggestions to add in the program. Patients would like to add aqua jogging, have exergaming bowling competitions between organizations, add groups of Nordic walking and they are enthusiastic on trying medical yoga through an app at home (and the oldest participant is 94 years old!). Additionally, they would like to have wine tastings, trips to castles, trips to a museum and have dinners together (we just had a Valentine’s lunch).

patient playing bowling on a computer - example of exergaming 

Patient playing bowling on a computer
The bottom-line of this little blog is that I think that sometimes as researcher we should sit back and ask patients what they would like to know, what is important for them, instead of us deciding for them.

Furthermore, I believe that in able to provide person-centered care, patients and their significant others should co-design interventions and be included in the evaluation of interventions.

Leonie Klompstra Headshot
Leonie Klompstra is a Nurse Scientist at the Linköping University in Sweden. Her primary focus is on heart failure and rehabilitations.