Family Medicine

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World Book of Family Medicine – European Edition 2015 Cross-sectional data from electronic health records of populations is used to create new knowledge. Original abstract http://www.woncaeurope.org/content/140-how-build-ideal-healthcare-information-system References Grossman C, Gooldby A, Olsen LA, McGinnis M. Engineering a learning health care system. A look at the future: workshop summary. Institute of Medicine and National Academy of Engineering. The National Academies Press, Washington 2011. http://www.nap.edu/catalog.php?record_id=12213 Hoffman TC, Montori VM, Del Mar C. The connection between evidence-based medicine and shared decision-making. JAMA 2014;312:1295-1296. Kawamoto K, Houlihan CA, Balas EA, Lobach DF. Improving clinical practice using clinical decision support systems: a systematic review of trials to identify features critical to success. BMJ 2005;330:765 Koopman RJ, Kochendorfer KM, Moore JL et al. A diabetes dashboard and physician efficiency and accuracy in accessing data needed for high-quality diabetes care. Ann Fam Med 2011;9:398-405. Wang CJ, Huang AT. Integrating technology into health care. JAMA 2012;307:569-570. 272
World Book of Family Medicine – European Edition 2015 Merete Jorgensen, MD mejor@sund.ku.dk 89 – Making Sense of Chronic Disease Merete Jorgensen, MD University of Copenhagen, Dept. of General Practice, Denmark Co-author Kirsti Malterud MD, PhD Research Unit for General Practice, Uni Research Health Bergen, Norway The number of people with chronic disease is increasing due to longer lifespan under better conditions and improved capacity for prevention and treatment of many lifethreatening diseases. A chronic disease always induces changes in a person’s life and might result in negative effects on quality of life and well-being. From a socioeconomic point of view and from the doctor’s perspective, there is a lot of knowledge about chronic diseases. But how do patients perceive life with a chronic disease? Patients do not always perceive themselves as ill when diagnosed (1). Patients have various ways of coping with a chronic disease. Can we as family doctors (FDs) contribute to a more successful coping process? We performed a qualitative study based on analysis of audiotaped consultations initiated by two key questions. The patients had a variety of chronic diseases. Twenty women and seven men seeing their FD (the first author, their FD) in family practice were included. The key questions dealt with the feeling of mastering life with a chronic disease (2). To have a feeling of control was important for our patients (3). Developing a personal explanatory illness model appeared necessary to gain control. Our patients created inner images of their illnesses by combining the perception of symptoms with the information provided by their doctor. If the explanation from the doctor did not coincide with the perceived symptoms, it caused a lot of anxiety and distress. Emotions played an important part in the coping process (4). Visualizing the disease could be helpful in improving understanding. A patient with chronic lower back pain was for example, shown a plastic spine and then said that she understood the anatomy and cause of the pain. Another patient saw the inside of her knee during arthroscopy and then fully understood her symptoms. The future and issues related to treatment were of the utmost importance to our participants. We usually emphasize that the prognosis is important. Giving the condition a name was equally important, because how can the doctors treat a disease that they cannot even name? Naming the disease was also important for the participants when talking to friends and family about the disease. For two of our patients the disease was an advantage in their new life. A younger father with a heart problem could be at home and take care of his son when he returned from school. An elderly woman with post-polio syndrome was glad that she could stay at home and read a lot of books, her favourite occupation. Her sons tried to persuade her to go for a daily walk. The participants explained why it is important that the doctor listens to the patient. A young man with epilepsy wanted to tell the doctor his experiences about the associations between stress and attacks, but the doctor was more interested in the concentration of anti-epileptic drugs in the blood tests. The young man was 273
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Family Medicine

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