Patient characteristics
In total, 41 LAPC patients were included in this study with a median age of 63 years (range 41–76 years). Table 1 presents the patient characteristics. All patients had received at least eight cycles of FOLFIRINOX before inclusion. After FOLFIRINOX, twelve patients (29.3%) showed partial response of the tumor, the other 29 patients (70.7%) stable disease. The median time between the last cycle of FOLFIRINOX and filling out the questionnaires and start of Actiwatch registration was 28 days (range 5–96 days). At the time of analysis, after a median follow-up of 7.9 months, 26 patients (63.4%) had progressive disease, and 14 patients (34.2%) had died.
Table 1 Patient characteristics Quality of life after FOLFIRINOX treatment
EORTC QLQ-C30 questionnaires were available for 40 patients. One patient withdraw from the study shortly after inclusion and did therefore not fill out any of the questionnaires and did not wear an Actiwatch. The reported answers per questionnaire item can be found in Table 2. The mean score for global health status in this cohort was 78.3 (± standard deviation 17.3). This score was significantly higher than the reported reference values for cancer patients (61.3 ± 24.2, P < 0.001), stage III–IV cancer patients (61.5 ± 23.6, P < 0.001), liver/bile/pancreas cancer patients (55.9 ± 25.1, P < 0.001), and general population (71.2 ± 22.4, P = 0.045), as presented in Fig. 1a. In Supplementary Table 3, all EORTC QLQ-C30 scores for our LAPC cohort and reference values are shown.
Table 2 Single-item answers to the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30) for the LAPC cohort (n = 40) Patients in this LAPC cohort scored higher on the emotional functioning scale (83.6 ± 16.0) compared to all reference cohorts (P < 0.001 for cancer cohorts, P = 0.043 for general population), shown in Fig. 1b. LAPC patients also scored higher on the physical functioning scale (83.2 ± 12.4) compared the stage III–IV cancer (P = 0.003) and liver/bile/pancreas cancer (P = 0.025) reference cohorts. On physical functioning (83.2 ± 12.4 vs 89.8 ± 16.2, P = 0.010), role functioning (73.3 ± 27.1 vs 84.7 ± 25.4, P = 0.005), and social functioning (78.4 ± 29.2 vs 87.5 ± 22.9, P = 0.012), LAPC patients scored lower than the general population reference cohort.
In Fig. 1c reported symptom scores are presented. Compared to the liver/bile/pancreas cancer reference cohort, our LAPC cohort scored lower on the symptom scales for nausea/vomiting (4.2 ± 10.5 vs 14.2 ± 22.5, P = 0.005), pain (14.2 ± 23.1 vs 29.6 ± 32.8, P = 0.003), insomnia (19.1 ± 24.9 vs 32.2 ± 34.4, P = 0.016), appetite loss (15.8 ± 23.8 vs 32.3 ± 37.2, P = 0.005), constipation (8.5 ± 19.7 vs 20.4 ± 31.3, P = 0.016), and financial difficulties (5.0 ± 17.7 vs 21.9 ± 32.5, P = 0.001). Compared to the general population, LAPC patients reported a higher score for fatigue (32.7 ± 21.2 vs 24.1 ± 24.0, P = 0.024), appetite loss (15.8 ± 23.8 vs 6.7 ± 18.3, P = 0.002), and diarrhea (14.1 ± 21.2 vs 7.0 ± 18.0, P = 0.013).
Pain after FOLFIRINOX treatment
In accordance with the EORTC QLQ-C30 outcome, the LAPC patients in this cohort did not often report symptoms of pain, measured with NRS scores. Only two patients reported an NRS score of > 3: 1 patient NRS 4 and 1 patient NRS 7. The patient with NRS 4 immediately started opioid treatment after inclusion. The patient with NRS 7 showed very early progression of disease, within 2 months after inclusion. Four of the patients reporting any symptoms of pain did not use any pain medication at the time of measurement.
Sleep quantity and quality after FOLFIRINOX treatment
Objective outcome of sleep, measured with the Actiwatch, was available from 36 patients. Due to technical issues with extraction of the data from the Actiwatch, sleep data was not available for the other four patients. The mean sleep duration was 8.0 h/night (± 1.2 h/night), based on a registration period of seven consecutive nights. The mean sleep efficiency was 69.6% (± 9.0%).
RCSQ questionnaires were available from 38 patients. The questionnaires were filled out during the first five consecutive nights of Actiwatch registration. The mean RCSQ score calculated from all five items during five nights was 72.0 (± 11.4). The scores per item per night are shown in Table 3. Patients reported the lowest scores for sleep depth (mean score 66.2 ± 18.7), and the highest scores for returning to sleep after being awaken (mean score 77.5 ± 11.9).
Table 3 Single-item answers to the Richards-Campbell Sleep Questionnaire (RCSQ) for the LAPC cohort (n = 38) There was not a significant correlation between patient-reported RCSQ scores and global health status/quality of life (Pearson r = 0.18; 95% confidence interval (CI) − 0.17 to 0.48, P = 0.306), as presented in Supplementary Fig. 1.
Activity level after FOLFIRINOX treatment
Objective activity registration, measured with the Actiwatch, was available for 32 patients. For the other eight patients, technical problems with extraction of data made it impossible to analyze activity data. Only 11/32 patients (34.4%) registered a period of moderate to vigorous activity at one or multiple days. The mean duration of moderate or vigorous activity was 5.3 min/day (± 14.8 min/day), based on a registration period of 7 consecutive days. When only including patients with at least one moderate-vigorous activity registered, the mean duration of moderate-vigorous activity was 37 min/week (± 103 min/week). Only three patients (9.4%) did more than 75 min of moderate-vigorous activity during the week, as recommended by the WHO.
Quality of life in patients with short overall survival after FOLFIRINOX
In Table 4, the most important EORTC QLQ-C30, RCSQ, and Actiwatch results are shown for patients with an overall survival of at least 12 months (n = 11) and patients who died within 12 months (n = 11) after completion of FOLFIRINOX. There were no differences between groups in patient-reported quality of life, based on the EORTC QLQ-C30 global health status item (mean score 80.4 ± 13.9 for long survival, 76.5 ± 21.5 for short survival patients, P = 0.619). There was a difference in patient-reported fatigue (P = 0.024): patients with a survival longer than 12 months reported more fatigue symptoms (mean score 45.4 ± 22.7), while patients with a short survival reported lower fatigue symptoms (24.1 ± 17.8). In both groups, 3/11 (27.3%) of patients reported a pain score of NRS > 0. Sleep efficiency, but not sleep duration or sleep quality, was better in patients with OS > 12 months (76.1 ± 5.0%) compared to patients with OS < 12 months (68.3 ± 9.8%, P = 0.039).
Table 4 Comparison of EORTC QLQ-C30, RCSQ, and Actiwatch results between patients with long and short overall survival (OS) after completion of FOLFIRINOX