Mariken Stegmann

OPT scores  Most patients rated extending life (34%; n=10) or maintaining independence (31%; n=9) as  the most important goal at baseline. Patients in the late phase less often rated extending life  as most important goal compared with those in the early phase (3/14 vs 7/15), more often  prioritising the reduction of pain or other symptoms (28% vs 7%) (Table 1). Five patients  chose >1 goal as most important, despite the OPT guideline explicitly stating that only one  should be prioritised. Goals changed during the follow‐up period for 16 patients (55%): 4 in  the early phase (27%) and 12 in the late phase (86%). For all goals, we observed both  increases and decreases in the scores. The most frequently observed change was that  extending life became less important in the month before death (21%). However, goals did  not change during the follow‐up period for 13 patients (45%): 11 in the early phase (73%)  and 2 in the late phase (14%).  Qualitative analysis of electronic patient records  In the qualitative analysis, we reached saturation after reviewing 26 of the 29 records, (i.e.  no new codes were used for the last three patients)  12 . We deducted three topics: 1)  reasons  for a specific baseline OPT score ; 2)  reasons for an OPT score change ; and 3)  reasons for OPT  score stability . For each topic, several themes were identified (Table 2; discussed in the  following paragraphs). There were also some differences between GP and specialist records,  with the latter having a tendency to report patients’ conditions more positively (Q1).  Q1a: Patient says he is feeling pretty good  (078, hospital record) Q1b :It is not going well. Chemotherapy has much effect on patient  (078, GP  record, 1 day later) OPT scores: 80‐80‐80‐80 (extending‐independence‐pain‐other)  Table 2 . Topics and themes from the qualitative analysis  Topic  Themes  Reasons for a specific baseline OPT score  Prioritising a specific goal   Rating a goal as unimportant   Treatment choices related to goals  Reasons for goal changes during follow‐up  Change related to symptoms  Change related to disease course  Change related to life events  Reasons for goal stability during follow‐up  Stability related to stable situation  Stability related to disease‐unrelated motivation  Stability despite symptoms  Changed goal: most important treatment goal changed or ≥1 item changed by ≥20 points (scale, 0–100)  between OPT‐based conversations.  Reasons for a specific baseline OPT score  We found three themes regarding the choice of initial goals: prioritising a specific goal ,  rating a goal as unimportant , and  treatment choices related to goals  (Table 2).  Some patients prioritised a specific goal  consciously. In their text entries, health care  providers described that some patients with a high score for extending life and/or  maintaining independence were feeling healthy and wanted to preserve the feeling (Q2).  58 Chapter 5