Publicatie: the 3P initiative

Op 19 juli gepubliceerd in Acta Oncologica:

Nationwide comprehensive gastro-intestinal cancer cohorts: the 3P initiative.

Ook te lezen in pdf: 2017-acta-oncol-nationwide-comprehensive-gastro-intestinal-cancer-cohorts-the-3p-initiative-2.pdf.

Prognostic value of patient-reported quality of life for survival in oesophagogastric cancer: analysis from the population-based POCOP study

Postoperative Complications and Long-Term Quality of Life After Multimodality Treatment for Esophageal Cancer: An Analysis of the Prospective Observational Cohort Study of Esophageal-Gastric Cancer Patients (POCOP)

Background: Esophagectomy has major effects on health-related quality of life (HR-QoL). Postoperative complications might contribute to a decreased HR-QOL. This population-based study aimed to investigate the difference in HR-QoL between patients with and without complications after esophagectomy for cancer.
Methods: A prospective comparative cohort study was performed with data from the Netherlands Cancer Registry (NCR) and Prospective Observational Cohort Study of Esophageal-Gastric Cancer Patients (POCOP). All patients with esophageal and gastroesophageal junction (GEJ) cancer after esophagectomy in the period 2015-2018 were enrolled. The study investigated HR-QoL at baseline, then 3, 6, 9, 12, 18, and 24 months postoperatively, comparing patients with and without complications as well as with and without anastomotic leakage.
Results: The 486 enrolled patients comprised 270 patients with complications and 216 patients without complications. Significantly more patients with complications had comorbidities (69.6% vs 57.3%; p = 0.001). No significant difference in HR-QoL was found over time between the patients with and without complications. In both groups, a significant decline in short-term HR-QoL was found in various HR-QoL domains, which were restored to the baseline level during the 12-month follow-up period. No significant difference was found in HR-QoL between the patients with and without anastomotic leakage. The patients with grades 2 and 3 anastomotic leakage reported significantly more "choking when swallowing" at 6 months (ß = 14.5; 95% confidence interval [CI], - 24.833 to - 4.202; p = 0.049), 9 months (ß = 22.4, 95% CI, - 34.259 to - 10.591; p = 0.007), and 24 months (ß = 24.6; 95% CI, - 39.494 to - 9.727; p = 0.007) than the patients with grade 1 or no anastomotic leakage.
Conclusion: In general, postoperative complications were not associated with decreased short- or long-term HR-QoL for patients after esophagectomy for esophageal or GEJ cancer. The temporary decrease in HR-QoL likely is related to the nature of esophagectomy and reconstruction itself.

Are gastrointestinal problems, nutritional care, and nutritional care needs associated with quality of life in patients with advanced cancer? Results of the observational eQuiPe study

Purpose: To assess the association of gastrointestinal problems, received nutritional care, and nutritional care needs with quality of life (QoL) in patients with advanced cancer.
Methods: A cross-sectional analysis within the observational prospective eQuiPe cohort study on experienced quality of care and QoL in patients with advanced cancer was performed. QoL and gastrointestinal problems were measured using the European Organization for the Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ)-C30. Received nutritional care (yes/no) and nutritional care needs (yes/a little bit/no) were measured by two questions. Gastrointestinal problems were categorized as clinically important based on the Giesinger thresholds. Univariable and multivariable linear regression analyses adjusted for age, gender, and treatment were used to analyze the association of gastrointestinal problems, received nutritional care, and nutritional care needs with QoL.
Results: Half of the 1080 patients with advanced cancer had clinically important gastrointestinal problems, 17% experienced nutritional care needs, and 14% received nutritional care. Multivariable analyses revealed that the presence of clinically important gastrointestinal problems (β (95% CI): -13.0 (-15.6; -10.4)), received nutritional care (β (95% CI): -5.1 (-8.5; -1.7)), and nutritional care needs (β (95% CI): -8.7 (-11.9; -5.5)) were associated with a low QoL.
Conclusion: Many patients with advanced cancer experience gastrointestinal problems, while only few patients receive nutritional care. These gastrointestinal problems, nutritional care needs, and nutritional care are associated with lower QoL, probably due to reversed causality or the irreversible nature of these problems in the palliative phase. More research on the relation of nutritional care, gastrointestinal problems, and QoL is needed to optimize nutritional support in end-of-life care.

Quality of life and quality of care as experienced by patients with advanced cancer and their relatives: A multicentre observational cohort study (eQuiPe)

Aim: This study aims to assess the quality of life and quality of care as experienced by patients with advanced cancer and their relatives while taking their interdependency into account.
Methods: A prospective multicentre observational study (eQuiPe study) was conducted. Quality of life scores (EORTC QLQ-C30) was compared to a matched normative population and logistic regression analyses were conducted to assess the relation between high emotional functioning (EF, measured with the EORTC QLQ-C30) and experienced quality of care (IN-PATSAT32, CQ-index PC).
Results: In total, 1103 (65%) patients and 831 (71%) relatives completed the baseline questionnaire, including 699 unique patient-relative couples. Patients experienced lower EF than the normative population (78 versus 87, p < .001). Compared to patients, relatives reported clinically relevantly lower EF (69 versus 78, p < .001). Being more satisfied with care in general (p < .05) and clarity about the key health-care provider (p < .05) was positively associated with high EF in patients. For relatives, experienced continuity of care (p < .01) and information for the patient (p < .05) were positively associated with high EF. The EF of patients (p < .001) and relatives (p < .001) were positively associated with each other and continuity of care as perceived by relatives was positively associated with high EF in patients (p < .01).
Conclusions: Patients with advanced cancer reported low levels of EF but their relatives reported even lower levels of EF. Experienced integrated organisation and satisfaction with care were positively related to EF. The interdependent relation between patients' and relatives' EF and their care experiences suggests that a family-centred approach can optimise palliative cancer care.

Perception of prognosis and health-related quality of life in patients with advanced cancer: results of a multicentre observational study (eQuiPe)

Purpose: To assess perception of prognosis in patients with advanced cancer, its association with patient's characteristics and health-related quality of life (HRQoL).
Methods: In a multicentre observational cohort study (eQuiPe), conducted on patients with advanced cancer, perceived prognosis, coping strategies, and HRQoL were assessed. Clinical data were obtained from the Netherlands Cancer Registry. Patients with vs. without a perception of prognosis, patients who perceived their prognosis as limited (< 1 year) vs. longer (> 1 year), and patients who did not want to know their prognosis vs. those who did not know for other reasons were compared.
Results: Of 1000 patients with advanced cancer, 29% perceived their prognosis as > 1 year, 13% < 1 year, and 4% non-life threatening. Thirty-six percent did not know their prognosis and another 15% did not want to know. Patients without a perception were older, lower educated, coped differently (less accepting, planning, active; more denial), and received treatment more often (p < 0.05). Global QoL was lower in patients with vs. without a perceived prognosis (66 (SD21) vs. 69 (SD19), p = 0.01), specifically in patients who perceived a limited rather than a longer prognosis (57 (SD22) vs. 70 (SD19), p < 0.01). Global QoL of patients who did not want to know their prognosis was comparable to patients who did not know for other reasons (71 (SD19) vs. 69 (SD19), p = 0.22).
Conclusion: More than half of the patients with advanced cancer have no perception of their prognosis. Patients with a perceived prognosis have lower HRQoL, but only in patients who perceived their prognosis as limited (< 1 year) and were probably closer to the end of life, which more likely determines their poorer HRQoL, rather than prognostic perception. Ignorance of prognosis is not associated with lower HRQoL, however, should not hamper appropriate palliative care.