Quality of life and symptom intensity over time in people with cancer receiving palliative care : results from the international European Palliative Care Cancer Symptom study

Background People with advanced cancer experience multiple symptoms during their illness trajectory, which can fluctuate in intensity. Aim To describe the course of self-reported quality of life, emotional functioning, physical functioning and symptom intensity over time in cancer patients receiving palliative care. Design Longitudinal study with monthly assessments, using the EORTC QLQ-C15-PAL. Data were analysed (1) prospectively, from baseline to >= 8-month follow-up; and (2) retrospectively, by taking death as index date and comparing results from three cross-sectional subsamples at different stages of illness (time to death >= 6, 5-3 and 2-0 months). Linear mixed models were calculated. Setting/participants A total of 1739 patients (mean age 66, 50% male) from 30 palliative care centers in 12 countries were included. Results In prospective analyses, quality of life, functioning and symptoms-except nausea/vomiting-remained generally stable over time. In retrospective analyses, patients 2-0 months before death reported significantly lower quality of life and physical functioning scores than those 5-3 months before death, who in turn scored lower than those >= 6 months before death, suggesting progressive decline. Emotional functioning remained initially unchanged, but decreased in the last months. Pain, fatigue and appetite loss showed a stable increase in intensity towards death. Dyspnea, insomnia and constipation increased from 5-3 to 2-0 months before death. Nausea/vomiting only increased when comparing those >= 6 months before death with those 2-0 months before death. Conclusion While the prospective approach showed predominantly stable patterns for quality of life, functioning and symptom severity throughout study duration, retrospective analyses indicated that deterioration was already apparent before the terminal phase and accelerated close to death. Our findings support the importance of early symptom identification and treatment in this population, and highlight the need for further studies to explore what characterizes those with either lower or higher symptom burden at different time points towards death

The role of health literacy in perceived information provision and satisfaction among women with ovarian tumors:A study from the population-based PROFILES registry

Objective To assess the association of subjective health literacy (HL) and education with perceived information provision and satisfaction. Methods Women (N = 548) diagnosed with an ovarian or borderline ovarian tumor between 2000 and 2010, registered in the Eindhoven Cancer Registry, received a questionnaire including subjective HL, educational level, perceived information provision, and satisfaction with the information received. Multiple linear and logistic regression analyses were performed, controlled for potential confounders. Results Fifty percent of the women responded (N = 275). Thirteen percent had low and 41% had medium subjective HL. Women with low HL reported less perceived information provision about medical tests, and were less satisfied with the information received compared to women with high HL. Low educated women reported that they received more information about their disease compared to highly educated women. Conclusion Low subjective HL among women with ovarian tumors is associated with less perceived information provision about medical tests and lower information satisfaction, whereas low education is associated with more perceived information provision about the disease. Practice implications HL should not be overlooked as a contributing factor to patients’ perceived information provision and satisfaction. Health care providers may need training about recognizing low HL

Coping strategies of patients with advanced lung or colorectal cancer in six European countries : insights from the ACTION study

Objective: Even when medical treatments are limited, supporting patients\u27 coping strategies could improve their quality of life. Greater understanding of patients\u27 coping strategies, and influencing factors, can aid developing such support. We examined the prevalence of coping strategies and associated variables. Methods: We used sociodemographic and baseline data from the ACTION trial, including measures of Denial, Acceptance and Problem-focused coping (COPEBrief COPE inventory), of patients with advanced cancer from six European countries. Clinicians provided clinical information. Linear mixed models with clustering at hospital level were used. Results: Data from 675 patients with stage III/ IV lung (342, 51%) or stage IV colorectal (333, 49%) cancer were usedmean age 66 (10 SD) years. Overall, patients scored low on Denial and high on Acceptance and Problem-focused coping. Older age was associated with higher scores on Denial than younger age ([beta] = 0.05CI[0.0230.074]), and patients from Italy ([beta] = 1.57 CI[0.7602.388]) and Denmark ([beta] = 1.82 CI[0.8812.750]) scored higher on Denial than patients in other countries. Conclusions: Patients with advanced cancer predominantly used Acceptance and Problem-focused coping, and Denial to a lesser extent. Since the studied coping strategies of patients with advanced cancer vary between subpopulations, we recommend taking these factors into account when developing tailored interventions to support patients\u27 coping strategies