Survivors of acute leukaemia and highly malignant lymphoma: retrospective views of daily life problems during treatment and when in remission

Fifty-four former patients, in remission after acute leukaemia or highly malignant lymphoma, responded to a questionnaire covering physical problems, view of help received, who was most helpful during the treatment phase, and the impact of the disease and treatment on their current life. Energy loss and nutritional problems were most troublesome during the treatment phase, signifying many other physical problems. Patients with acute leukaemia had more problems, and thought the care was worse than did patients with highly malignant lymphoma. Serious physical problems correlated with low satisfaction with practical help received, indicating that the nurses failed to meet the needs of those suffering the most. Reduced psychological and sexual energy persisted in remission, showed no correlation with the extent of physical  problems during the treatment phase, but correlated with current existential problems and sensitivity to infections, with a great need for intimate help and counselling and with a low Sense of Coherence. Family relationships were said to have improved, while work and finances were negatively affected. The results indicate that nursing care should actively focus physical problems, especially the energy loss and nutritional problems. The overwhelming fatigue hinders the patient to take care of physical aspects for her/him self, and may be overlooked by nurses since their motor capability seem intact. The long term effect of the illness means reduced psychological and sexual energy and high degree of existential problems and sensitivity to infections, which indicates the importance of follow-up care and perhaps especially for counselling for the long-term reactions with disturbed equilibrium.