Mariken Stegmann

Q10:  Severe back pain (…) Stop chemotherapy, start symptom‐oriented palliation. (265 hospital record)  OPT scores: 80‐70‐30‐50 (extending‐independence‐pain‐other)  Discussion  Summary  Extending life was most often (n=10, 34%) prioritised as the most important goal. However,  compared with patients in the early phase of their disease, those in the late phase not only  prioritised extending life less often (n=3, 21% vs n=7, 47%) but also changed their goals more  often (n=12, 86% vs n=4, 27%). Triggers for these changes appeared related to both the  disease (e.g., symptoms, disease course) and to other life events (e.g. death of a close  relative). Goal stability was most often observed in patients without changes in disease  symptoms or without side‐effects from treatment.  Strengths and limitations  As far as we know, this is the first study exploring changes over time in the generic  treatment goals of patients with non‐curable cancer. The qualitative design meant that we  could generate hypotheses about which patients change their goals and what might trigger  those changes, although these hypotheses must now be validated in further research. An  important limitation of the study is that we did not use a purposive sample, which is  recommended to achieve a wide variety of participants in qualitative research. 13  Instead, we  used the intervention group of the OPTion RCT in which more than half of the participants  were men with lung cancer treated in an academic hospital. However, older patients with  lung cancer are often less well educated and are generally more difficult to recruit, making  this an interesting sample.  Another limitation is that we used text entries from the patient records of health care  providers. This is important because these reflect the health care provider’s perception of  the consultation, and there will have been incomplete details of what was discussed. For  example, although we found few entries concerning the benefits and harms of different  treatment options, these may have been discussed but not recorded. Similarly, we could not  discuss prior treatment experiences because we lacked that information.  Comparison with existing literature  Most patients in this study indicated that extending life (34%) or maintaining independence  (31%) was their most important goal. Although other studies among older patients have  shown similar percentages for extending life (31%–35%), they have also shown that  maintaining independence was more often prioritised as the most important outcome  (35%–49%). 5,14  This might be explained by patients in our sample having non‐curable cancer,  in whom there was a notable difference between the early phase (47% and 27% for  extending life and maintaining independence, respectively) and the late phase (21% and 36%  for extending life and maintaining independence, respectively). The relatively high  proportion of patients who prioritised extending life in our early phase group could be  explained not only by the longer life expectancy of this group but also the high proportion of  patients receiving care in a university hospital (60%). Patients can be referred to this centre  for new (targeted) therapies in a research context, which may have led to a more select  5 61 Treatment goals and their changes over time