Quality of life and care in leukemia, myeloma and non-malignant disease. Opinions of patients and relatives, and effects of geography and time
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In a questionnaire study 140 subjects answered 4200 questions in 1980 and 1986. They consisted of patients with myeloma, acute leukemia, lung carcinoma, and non-malignant disease and their relatives. In 22 additional cases the questionnaire was not answered.
The results show that myeloma patients are less content with the general care than leukemia patients (P < 0.05). Similarly, relatives of deceased myeloma patients are less satisfied with the information given to them than relatives of deceased leukemia patients (P < 0.001). The information has improved with time, however, since the patients were more satisfied in 1986 than in 1980 (P < 0.001) and relatives of myeloma patients still alive were more satisfied than relatives of patients who had died earlier (P < 0.001).
The opinions of patients were similar to those of their relatives. However, the relatives of leukemia patients were even more satisfied with the contact with the medical staff than the patients themselves (P < 0.05).
As many as 10–30% of the relatives never gave up hope for their relative’s survival. Only two out of 27 deaths were considered not dignified.
The lung carcinoma patients reported a less good quality of life (P < 0.001), and less satisfaction with the information given (P < 0.01), than the hematological patients from the same year. Similarly, their attitude to the medical care improved less (P < 0.01), and they were less content with the general care than the leukemia group (P < 0.05).
The non-malignant patients rated their quality of life less highly than the hematological patients from the same year (P < 0.001). They were also less satisfied with the contacts with the staff (P < 0.001) and with the information given (P < 0.001).
Key wordsMultiple myeloma Leukemia Quality of life and care
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