Final Activity Report Summary - QOL AND CANCER (Monitoring care and treatment of cancer patients in clinical practice by the use of QoL assessments)
Quality of life (QoL) is increasingly used in clinical trials, but rarely in clinical practise. To systematically monitor cancer patients with QoL instruments in clinical practice might be a way to individualise care, enhance patient-physician communication with regard to psychosocial concerns, inform clinical decision-making, and improve patient outcomes, primarily QoL.
Some studies have explored the possibility of improving the care of patients by using QoL assessments in clinical practice. Two recent randomised, controlled trials show that the use of the cancer specific QoL instrument EORTC-QLQ-C30 before the consultation increases the patients and the doctors readiness to discuss QoL aspects on care and treatment, and has a positive impact on a few QoL domains. These studies indicate that it is possible to achieve positive effects using QoL instruments in clinical practice, but the findings have limited generalisability because of the specific framework of these studies. So there is a need for studies using the EORTC-QLQ-C30 in other settings, e.g. Sweden. Developments of computer administrated instruments also means that some of the practical obstacles of carrying out QoL assessments in clinical practice can be overcome.
Previous studies in clinical practice have used standardised QoL instruments, although it has been suggested that more individualised instruments might be preferable. The individualised instrument SEIQoL (The Schedule for the Evaluation of Individual Quality of life) has proved to be a valid, reliable and acceptable measure of QoL in a population of terminally ill patients. Furthermore, patients perceive that the validity of SEIQoL-DW (a modified version of SEIQoL) in measuring their QoL is higher than that of traditional health-related QoL-instruments, exemplified by SIP (Sickness Impact Profile) and SF-36 (Short Form-36). The flexibility of the instrument to capture the individuals definition of QoL is especially important in cancer care, since health state changes have been found to change the individuals internal standards, values and the conceptualisation of QoL.
Specific aims:
- To evaluate the efficacy of QoL instruments as a means of individualizing cancer care and treatment.
- To identify the most appropriate instrument for this purpose, the cancer specific instrument EORTC-QLQ-C30 or the individualised instrument SEIQoL-DW.
- To identify the minimal important differences (MID) for SEIQoL and EORTC-QLQ-C30, and,
- To explore the experiences of, and attitudes towards, QoL assessment in clinical practice among patients and health care personnel.
Several consecutive qualitative and quantitative studies have been carried out to ensure that the feasibility of the intervention and the validity of the computer based version of the SEIQoL are satisfactory. Results show that the computer-administrated version of SEIQoL-DW provides the same results as the paper and pen version, and can be considered a valid alternative. In summary, our pilot studies have included a total of 40 patients with gastrointestinal cancer, and have shown that all patients, including older ones, found it feasible to use the touch-screen computer version of the SEIQoL-DW to assess their QoL. Most patients appreciated to receive information about their own QoL, and physicians perceived the use of SEIQoL-DW as positive and potentially clinical meaningful.
Both patients and physicians appreciated that the instrument enables systematic follow-up of the patients QoL, and facilitates the detection of psychosocial problems. However, the QoL results were only brought up in a few consultations, mainly due to time pressure and the doctor not understanding how to use the results. These findings underscore the importance of thorough information about the intervention to the concerned physicians before the study start.
So far, we have included all of the planned number of 80 historical controls. We have also started to analyse a selection of the audio-taped visits using a qualitative approach.
Some studies have explored the possibility of improving the care of patients by using QoL assessments in clinical practice. Two recent randomised, controlled trials show that the use of the cancer specific QoL instrument EORTC-QLQ-C30 before the consultation increases the patients and the doctors readiness to discuss QoL aspects on care and treatment, and has a positive impact on a few QoL domains. These studies indicate that it is possible to achieve positive effects using QoL instruments in clinical practice, but the findings have limited generalisability because of the specific framework of these studies. So there is a need for studies using the EORTC-QLQ-C30 in other settings, e.g. Sweden. Developments of computer administrated instruments also means that some of the practical obstacles of carrying out QoL assessments in clinical practice can be overcome.
Previous studies in clinical practice have used standardised QoL instruments, although it has been suggested that more individualised instruments might be preferable. The individualised instrument SEIQoL (The Schedule for the Evaluation of Individual Quality of life) has proved to be a valid, reliable and acceptable measure of QoL in a population of terminally ill patients. Furthermore, patients perceive that the validity of SEIQoL-DW (a modified version of SEIQoL) in measuring their QoL is higher than that of traditional health-related QoL-instruments, exemplified by SIP (Sickness Impact Profile) and SF-36 (Short Form-36). The flexibility of the instrument to capture the individuals definition of QoL is especially important in cancer care, since health state changes have been found to change the individuals internal standards, values and the conceptualisation of QoL.
Specific aims:
- To evaluate the efficacy of QoL instruments as a means of individualizing cancer care and treatment.
- To identify the most appropriate instrument for this purpose, the cancer specific instrument EORTC-QLQ-C30 or the individualised instrument SEIQoL-DW.
- To identify the minimal important differences (MID) for SEIQoL and EORTC-QLQ-C30, and,
- To explore the experiences of, and attitudes towards, QoL assessment in clinical practice among patients and health care personnel.
Several consecutive qualitative and quantitative studies have been carried out to ensure that the feasibility of the intervention and the validity of the computer based version of the SEIQoL are satisfactory. Results show that the computer-administrated version of SEIQoL-DW provides the same results as the paper and pen version, and can be considered a valid alternative. In summary, our pilot studies have included a total of 40 patients with gastrointestinal cancer, and have shown that all patients, including older ones, found it feasible to use the touch-screen computer version of the SEIQoL-DW to assess their QoL. Most patients appreciated to receive information about their own QoL, and physicians perceived the use of SEIQoL-DW as positive and potentially clinical meaningful.
Both patients and physicians appreciated that the instrument enables systematic follow-up of the patients QoL, and facilitates the detection of psychosocial problems. However, the QoL results were only brought up in a few consultations, mainly due to time pressure and the doctor not understanding how to use the results. These findings underscore the importance of thorough information about the intervention to the concerned physicians before the study start.
So far, we have included all of the planned number of 80 historical controls. We have also started to analyse a selection of the audio-taped visits using a qualitative approach.