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Project: Assessing quality of life in cancer patients diagnosed with poor prognoses: adapting existent measures to achieve better sensitivity in follow-up studies

01/01/13 – 31/12/16

Quality of life (QOL) of the patient and his or her family is the core outcome variable in palliative care. Although medical staff can adequately judge the progress of a disease, it remains unclear how patients personally experience their terminal illness and how it determines their QOL. It is found that there are some serious problems in assessing quality of life adequately in end-of-life care. The main problem is that outcomes of QOL measures are often found to remain rather stable even despite obvious changes in the patient’s condition. This problem is called a “lack of sensitivity” for the often-fast changing health conditions. A related problem is referred to as “the response shift”, namely the rapidly changing frame of reference when a patient is approaching death. Current, widely used measures of QOL do not perform well in this respect, either because of a poor construct validity or a lack of sensitivity. This project addresses the problem of poor validity and sensitivity in QOL assessment with 3 consecutive studies: 1) a systematic review of the literature for probable causes of invalidity and insensitivity of QOL measures in end-of-life patients, 2) in-depth interviews with patients and focus groups with medical staff and relatives of patients will be performed to scrutinize flaws in the questionnaires, and 3) improvements suggested by these previous 2 studies, will be implemented in existing questionnaires and these will be tested with patients diagnosed with cancer on 2 successive occasions. In conclusion, a novel QOL measure, with optimized clinimetric performance and improved sensitivity will result, that is 1) adapted to use with palliative patients, 2) not just designed for use with a specific disease or organ or therapy, 3) optimized for clinimetric performance and 4) has improved sensitivity to objective changes.