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.