Acute leukaemia or highly malignant lymphoma patients' quality of life over two years: a pilot study

The aim of this study was, first, to investigate the quality of life and sense of coherence for acute leukaemia and malignant lymphoma patients at the start of treatment and over 2 years. A second aim was to compare questionnaire responses with patients' statements in open-ended interviews. A consecutive sample of 16 patients responded to the Quality of Life Questionnaire (QLQ-C30), Lund Gerontological Centre questionnaire and the Sense of Coherence Scale at the start of treatment and after 12 and 24 months. The QLQ-C30 questionnaire was administered also after 4, 8, 16 and 20 months. Tape-recorded open-ended interviews were conducted every 4 months before the patients responded to the questionnaires. Quality of life (QoL) and sense of coherence were scored more highly at the beginning of treatment for patients who did not relapse, than for those who relapsed. This difference remained throughout the study period. There was no correspondence in responses between questionnaire and personal interviews, although the results from the interviews, in some aspects, validated the result from the QLQ-C30. Those patients who relapsed may have had different prerequisites or been in a worse position at the onset of the disease and, reasonably, they needed more compensatory nursing care. More knowledge about the correspondence between a person's perceived QoL when discussed in personal interviews compared with responses given in standardised QoL questionnaires is needed before any assumption about clinical relevance can be made.