ABSTRACT

This PhD study was carried out at the Department of Haematology, Odense University Hospital, and the Institue of Publich Health, Department of General Practice, University of Southern Denmark.

The aim of the study was 1) to describe AML-patients' illness perspective and 2) their way of coping with illness and treatment, including 3) their information needs and information seeking. In addition 4) to describe delay regarding establishment of diagnosis.

During a one-year period twenty-one newly diagnosed patients were included consecutively in a qualitative interview study. The patients were planned interviewed three times during 12 months. Fifty-nine patients were included consecutively during two years in a questionnaire study. The time period from onset of symptoms to the initial medical contact (patient delay); and the time period from the first medical contact to definitive establishment of diagnosis (doctor delay) were described.

The results of the analyses of patient's perspective (illness) are described under the headings: Illness aetiology, onset of symptoms, pathophysiological processes - what happens in the body, hospitalisation, treatment and the prognosis. The patients' illness aetiology models answered existential questions and helped the patients making sense and coherence of their illness. In general, the patients focused on personal and concrete aspects of illness. Their bodily experiences and practical consequences were important for their way of understanding illness; whereas general, theoretical, biomedical aspects of the illness did not interest them.

The patients' ways of coping with illness, including their information needs and seeking, were closely related to illness. Many saw no need for detailed, medical information about their disease. They did not focus on statistically based estimates like survival rates, but estimated their prognosis on the basis of their own individual experiences. In contrast, many relatives did seek general, medical information, especially on the Internet. However, none of the patients were interested in receiving this kind of information. Younger patients often expressed that they "ought" to be informed and to seek medical information. However, these intentions were never carried out. In fact, none of the patients sought medical information outside the hospital. A reason for the younger patients expressing interest in medical information (without actually seeking information) might be explained as their wish to fulfil the role of the well-informed, late modern society's "ideal patient".

Patient and doctor delay were 12 and 14 days respectively (medians). Factors related to longer patient's delay were symptoms of anaemia, old age and a low education. Patients with a preceding myelodysplasia experienced a significantly longer doctor delay than patients with de novo AML.