Purpose Patient-reported outcome measures (PROMs) are becoming increasingly important in clinical practice. The implementation of PROMS in routine practice is challenging because information regarding psychometric quality of measurement instruments is fragmented and standardization is lacking. The aim of this study is to evaluate the quality of self-administered HRQoL measurement instruments for use in patients with advanced cancer in clinical practice. Methods A systematic literature search was performed in PubMed, Embase, PsycINFO, and CINAHL to identify studies concerning self-administered HRQoL measurement instruments in patients with advanced cancer between January 1990 and September 2016. Quality of the measurement instruments was assessed by predefined criteria derived from the COSMIN checklist. Results Sixty-nine articles relating to 39 measurement instruments met the inclusion criteria. Information regarding important measurement properties was often incomplete. None of the instruments performed sufficient on all measurement properties. Considering available information, the EORTC QLQ-C15-PAL appeared to have adequate psychometric properties, together with the EORTC QLQ-BM22. Conclusions Many of the existing HRQoL measurement instruments have not yet been evaluated in an adequate manner. Validation of self-administered HRQoL measurement instruments is an ongoing development and should be prioritized. This review contributes to improved clarity regarding the availability and quality of HRQoL measurement instruments for patients with advanced cancer and supports health care professionals in an adequate selection of suitable PROMs in clinical practice.

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All aspects of HRQoL are considerably impaired in patients with advanced cancer, with a marked lower HRQoL in the final months of life. This marked decline of HRQoL in the final months of life may be an indicator of approaching death and serve as an important trigger for end-of-life communication and decision-making about subsequent treatment and supportive care.

Background Palliative care is becoming increasingly important because the number of patients with an incurable disease is growing and their survival is improving. Previous research tells us that early palliative care has the potential to improve quality of life (QoL) in patients with advanced cancer and their relatives. According to limited research on palliative care in the Netherlands, patients with advanced cancer and their relatives find current palliative care suboptimal. The aim of the eQuiPe study is to understand the experienced quality of care (QoC) and QoL of patients with advanced cancer and their relatives to further improve palliative care. Methods A prospective longitudinal observational cohort study is conducted among patients with advanced cancer and their relatives. Patients and relatives receive a questionnaire every 3 months regarding experienced QoC and QoL during the palliative trajectory. Bereaved relatives receive a final questionnaire 3 to 6 months after the patients’ death. Data from questionnaires are linked with detailed clinical data from the Netherlands Cancer Registry (NCR). By means of descriptive statistics we will examine the experienced QoC and QoL in our study population. Differences between subgroups and changes over time will be assessed while adjusting for confounding factors. Discussion This study will be the first to prospectively and longitudinally explore experienced QoC and QoL in patients with advanced cancer and their relatives simultaneously. This study will provide us with population-based information in patients with advanced cancer and their relatives including changes over time. Results from the study will inform us on how to further improve palliative care. Trial registration Trial NL6408 (NTR6584). Registered in Netherlands Trial Register on June 30, 2017.

Background:We conducted a population-based study to investigate long-term survival in patients diagnosed with a (suspected) pancreatic adenocarcinoma.

Background: Pancreatic cancer carries a poor prognosis. To date, there has been little research devoted to decision-making regarding treatment options in pancreatic cancer, including the rationale for choosing to withhold tumor targeting treatment (TTT). This study aims to gain insight into the characteristics of patients receiving no TTT, the reasons for this decision and their survival. Methods: All patients diagnosed in the Netherlands between 1 January 2014 and 30 June 2015 with a proven pancreatic adenocarcinoma or a pathologically unverified pancreatic tumor were identified in the Netherlands Cancer Registry. Information on initial management, patient characteristics, main reasons for no TTT (as reported in medical charts) and survival were analyzed. Results: A total of 3090 patients was included. Of these patients, 1818 (59%) received no TTT. Median age of no TTT patients was 74 years (range 35-99) versus 66 years (30-87) for TTT patients. In the no TTT group 77% had a clinical stage III/IV versus 57% of patients who received TTT. Main reasons for not starting TTT were patient's choice (27%) and extensive disease (21%). Median survival of patients who did not receive TTT was 1.9 months, ranging from a median survival of 0.8 months (when main reason to withhold TTT was short life expectancy) to 4.4 months (main reason to withhold TTT: old age). In the latter group, a relatively large proportion of clinical stage I tumors was present (37%). Conclusion: The majority of patients with pancreatic cancer received no TTT and had a very poor median survival. In most patients, patient's choice not to start treatment was the main reason for withholding treatment, suggesting patient's involvement in decision-making.

Little is known about the impact of adrenocortical carcinoma (ACC) on health-related quality of life (HRQoL), and no disease-specific questionnaire exists. This qualitative study aimed to identify relevant domains of HRQoL for patients with ACC. In 2 focus group interviews, we discussed concerns regarding living with ACC and its treatments. The first group consisted of 6 patients on mitotane therapy and their partners or relatives, the second group of 4 patients after surgery alone and their partners. Inductive qualitative content analysis was used to analyze the interviews. We identified 4 domains related to HRQoL in patients with ACC, namely physical complaints, mental consequences, social consequences, and functional limitations. For example, physical complaints included symptoms of the disease and side effects of mitotane therapy; mental consequences included feeling insecure and living from scan to scan; and functional limitations included daily activities and mobility. We further found that patients’ experiences with the health care system and health care professionals and partner perspectives influence HRQoL. In conclusion, ACC has a large impact on HRQoL in 4 domains. These results can be used to improve communication about HRQoL issues. We will use our findings to generate a disease-specific questionnaire to measure HRQoL in patients with ACC.

ObjectivesA significant proportion of women with advanced-stage ovarian cancer receive no cancer-directed treatment and limited research has been devoted to this group. This population-based study aimed to gain insight into treatment patterns and trends in patients with advanced epithelial ovarian cancer in the Netherlands and the main reasons for deciding for no cancer-directed treatment.MethodsAll patients diagnosed with advanced epithelial ovarian cancer, International Federation of Gynecology and Obstetrics (FIGO) classification IIB−IV, between 2008 and 2016 were identified from the Netherlands Cancer Registry. Trends in the number of patients receiving cancer-directed treatment were analyzed. Multivariable logistic regression analysis was used to identify factors associated with no cancer-directed treatment. The main reasons for no cancer-directed treatment were analyzed.ResultsA total of 9303 patients were included, of whom 14% (n=1270) received no cancer-directed treatment while 67% (n=6218) received a combination of cytoreductive surgery and chemotherapy. Some 15% (n=1399) received chemotherapy only, and 4.5% (n=416) surgical resection or hormonal therapy only. The proportion of patients receiving no cancer-directed treatment was higher in 2014–2016 (16%, n=496/3175) compared with 2008–2010 (11%, n=349/3057, p<0.001). Associated factors with no cancer-directed treatment were higher age, FIGO stage IV, lower socioeconomic status, co-morbidity, and more recent years of diagnosis (p<0.001). Main reasons for no cancer-directed treatment were patient’s choice (40%) and poor condition of the patient (29%).ConclusionsThe proportion of patients with advanced epithelial ovarian cancer not receiving cancer-directed treatment has increased in the last decade in the Netherlands. Patient’s choice was the main reason for the decision to undergo no cancer-directed treatment, which indicates patient involvement in the decision-making process. The second most common reason for no cancer-directed treatment was poor condition of the patient, which might indicate careful selection of patients for treatment. Decision-making regarding treatment is well-considered, but more insight is needed, especially from the patient's perspective.