Insights into what extent certain care needs are experienced from diagnosis onwards and the role of various care givers
Palliative care is an approach to care that improves the quality of life of people with life- threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. Although palliative care is often still seen as a final option for cancer patients, when disease-modifying treatments are no longer an option, there is more and more evidence and recognition that an earlier integration of palliative care into the regular oncological care, possibly alongside curative and life-prolonging care, can improve peoples quality of life and quality of dying. A palliative care approach can be specialist (when it is delivered by services or specialist palliative care providers specifically trained in palliative care) or generalist (when it is delivered by the regular care providers or services such as community nurses or family physicians).The findings of the dissertation of Kim Beernaert shows that patients do not receive palliative care or receive it too late. Consequently there might be too little time to achieve the goals of palliative care. Qualitative interviews conducted within the same PhD pointed out that palliative care needs may already occur from diagnosis onwards.
To achieve an optimal and timely initiation and integration of palliative care into regular oncology care, and hence to promote the quality of life and care of the cancer patient, quantitative research is needed to show to what extent certain care needs occur from diagnosis and to investigate the role of different caregivers (with emphasis on the regular care providers). In response to this missing but necessary knowledge, we proposed this project.
We collected self-reported data from 620 patients with cancer in the University Hospital of Ghent, Belgium. They completed a questionnaire on quality of life (using the EORTC QLQ-C30), the obtained care and unmet palliative care needs. The treating oncologist collected clinical data such as type of tumor, phase in the illness trajectory and prognosis. We also used European reference values of the EORTC QLQ- C30 to compare the mean scores with a norm group. This project will allow us to analyze the collected data thoroughly and determine in which areas of palliative care and at what moments certain patients need more care and for whom a palliative care approach might be appropriate.