Assessment of the quality of life of patients with advanced and end- stage cancer or serious infections with a symptom-based or an impact-based instrument

In 1992 a project was started in which home care technology was made available to patients with cancer or serious infections. Primary care providers were trained and supported to administer parenteral drugs and fluids in the home setting. Between 1992 and 1995 we applied the Rotterdam Symptom Checklist (RSCL) and the Sickness Impact Profile (SIP) as questionnaires for quality of life (QoL) assessment in a group of 112 hospitalized patients who were prepared to receive further treatment at home. Scores on the RSCL revealed a high level of symptomatology in both the physical and the psychological dimension. Factor analysis showed a five- factor rather than a two-factor structure. The SIP showed considerable restrictions in daily living, particularly in the physical dimension. Whereas the RSCL and the SIP correlated well in the psychological and physical dimensions in advanced cancer patients, this correlation disappeared in the group of end-stage cancer patients. The data indicate that the health- related QoL of end-stage cancer patients cannot be reliably be assessed with a symptom-based instrument alone; it needs to be supplemented by other instruments, such as the SIP.