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Purpose Despite the detrimental impact of chronic (chemotherapy-induced) peripheral neuropathy PN on patients’ lives, treatment options remain limited. We examined the association between mindfulness and chronic PN symptom severity and impairments in related patient-reported outcomes (PROs) among colorectal cancer (CRC) patients up to 2 years after diagnosis. Methods Newly diagnosed stage I–IV CRC patients from four Dutch hospitals were eligible for participation. Patients (N = 336) completed a questionnaire on mindfulness (MAAS) at 1 year after diagnosis, and questionnaires on sensory (SPN) and motor peripheral neuropathy (MPN) (EORTC QLQ-CIPN20), anxiety and depressive symptoms (HADS), sleep quality (PSQI), and fatigue (EORTC QLQ-C30) before initial treatment (baseline) and 1 and 2 years after diagnosis. Results At 1-year follow-up, 115 patients (34%) and 134 patients (40%), respectively, reported SPN or MPN symptoms. In multivariable regression analyses, higher mindfulness at 1-year follow-up was associated with less severe MPN and fewer anxiety and depressive symptoms, better sleep quality, and less fatigue. Of the patients with SPN or MPN at 1-year follow-up, symptoms had not returned to baseline level at 2-year follow-up in 59 (51%) and 72 (54%) patients, respectively. In this subgroup, higher mindfulness was associated with less severe SPN and fewer anxiety symptoms, depressive symptoms, and fatigue at 2-year follow-up. Conclusion Mindfulness was associated with less severe PN and better related PROs among CRC patients with chronic PN. More research is needed to examine the role of mindfulness in the transition from acute to chronic PN.

Contains fulltext : 287919.pdf (Publisher’s version ) (Open Access) BACKGROUND: In 2016, the International Consortium for Health Outcomes Measurement (ICHOM) defined an international consensus recommendation of the most important outcomes for lung cancer patients. The European Health Outcomes Observatory (H2O) initiative aimed to develop an updated patient-centered core outcome set (COS) for lung cancer, to capture the patient perspective of the impact of lung cancer and (novel) treatments using a combination of patient-reported outcome (PRO) instruments and clinical data as a means to drive value-based health-care. MATERIAL AND METHODS: An international, expert team of patient representatives, multidisciplinary healthcare professionals, academic researchers and pharmaceutical industry representatives (n = 17) reviewed potential outcomes generated through literature review. A broader group of patients/patient representatives (n = 31), healthcare professionals / academic researchers (n = 83), pharmaceutical industry representatives (n = 26), and health authority representatives (n = 6) participated in a Delphi study. In two survey rounds, participants scored the relevance of outcomes from a preliminary list. The threshold for consensus was defined as ≥ 70 % of participants scoring an outcome as 'highly relevant'. In concluding consensus-meeting rounds, the expert multidisciplinary team finalized the COS. RESULTS: The preliminary list defined by the core group consisted of 102 outcomes and was prioritized in the Delphi procedure to 64. The final lung cancer COS includes: 1) case-mix factors (n = 27); 2) PROs related to health-related quality of life (HRQoL) (n = 25); 3) clinical outcomes (n = 12). Patient-reported symptoms beyond domains included in the ICHOM lung cancer set in 2016 were insomnia, nausea, vomiting, anxiety, depression, lack of appetite, gastric problems, constipation, diarrhoea, dysphagia, and haemoptysis. CONCLUSIONS: We will implement the lung cancer COS in Europe within the H2O initiative by collecting the outcomes through a combination of clinician-reported measures and PRO measures. The COS will support the adoption and reporting of lung cancer measures in a standardized way across Europe and empower patients with lung cancer to better manage their health care.

Background: Health‐related quality of life (HRQOL) is a critical aspect to consider when making treatment decisions for patients with non‐Hodgkin‐lymphoma (NHL). This international study by the European Organisation for Research and Treatment of Cancer (EORTC) tested the psychometric properties of two newly developed measures for patients with high‐grade (HG)‐ and low‐grade (LG)‐NHL: the EORTC QLQ‐NHL‐HG29 and the EORTC QLQ‐NHL‐LG20 to supplement the core questionnaire (EORTC QLQ‐C30). Methods: Overall, 768 patients with HG‐NHL (N = 423) and LG‐NHL (N = 345) from 12 countries completed the QLQ‐C30, QLQ‐NHL‐HG29/QLQ‐NHL‐LG20 and a debriefing questionnaire at baseline, and a subset at follow‐up for either retest (N = 125/124) or responsiveness to change (RCA; N = 98/49). Results: Confirmatory factor analysis showed an acceptable to good fit of the 29 items of the QLQ‐NHL‐HG29 on its five scales (symptom burden [SB], neuropathy, physical condition/fatigue [PF], emotional impact [EI], and worries about health/ functioning [WH]), and of the 20 items of the QLQ‐NHL‐LG20 on its four scales (SB, PF, EI, and WH). Completion took on average 10 minutes. Test–retest reliability, convergent validity, known‐group comparisons, and RCA find satisfactory results of both measures. A total of 31%–78% of patients with HG‐NHL and 22%–73% of patients with LG‐NHL reported symptoms and/or worries (e.g., tingling in hands/ feet, lack of energy, and worries about recurrence). Patients reporting symptoms/ worries had substantially lower HRQOL compared to those without. Discussion: The use of the EORTC QLQ‐NHL‐HG29 and QLQ‐NHL‐LG20 questionnaires in clinical research and practice will provide clinically relevant data to better inform treatment decision‐making. Plain language summary � The European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Group developed two questionnaires. � These questionnaires measure health‐related quality of life. � The questionnaires are for patients with high‐grade or low‐grade non‐Hodgkin lymphoma. � They are called the EORTC QLQ‐NHL‐HG29 and QLQ‐NHL‐LG20. � The questionnaires are now internationally validated. � This study demonstrates that the questionnaires are reliably and valid, which are important aspects of a questionnaire. � The questionnaires can now be used in clinical trials and practice. � With the information gathered from the questionnaires, patients and clinicians can better evaluate treatments and discuss the best choice for a patient.

PurposeReturning patient-reported outcomes to patients might aid patients in detecting symptoms and might facilitate early intervention. This descriptive study evaluates the use of an individual feedback report on patient-reported outcomes for colorectal cancer patients and aims to assess differences in patient, tumor, and treatment characteristics and cohort retention between patients who opt and do not opt for the feedback report.MethodsPatients with colorectal cancer participating in the nationwide Prospective Dutch ColoRectal Cancer Cohort, who filled in questionnaires digitally between June 2018 and January 2019, were included. Participants were given the option to receive a feedback report at baseline, 3, 6, and 12 months. The usefulness, content, and layout of the feedback report were evaluated. Differences in patient, tumor, and treatment characteristics, patient-reported outcomes, and cohort retention at subsequent questionnaires between participants who did and did not opt for feedback were assessed.ResultsA total of 484 participants were included of whom 293 (61%) opted for feedback. The feedback report was considered useful by 92%. No differences in patient, tumor, and treatment characteristics, and patient-reported outcomes were found between participants who did and did not opt for feedback. The response rate was higher among patients who opted for feedback compared to patients who did not opt for feedback at T3 (84 vs 74%), but not at T6 and T12.ConclusionThe feedback report was used by 6 out of 10 patients. The feedback report was considered valuable and associated with a higher subsequent response rate.

PurposeTo develop optimal cancer survivorship care programs, this study assessed the quality of prostate cancer follow-up care as experienced by patients shortly after completion of primary treatment.MethodsWe surveyed 402 patients with localized prostate cancer participating in a randomized controlled trial comparing specialist versus primary care–based follow-up. For the current study, we used patient-reported data at the time of the first follow-up visit at the hospital, prior to randomization. We assessed patients’ ratings of the quality of follow-up care using the Assessment of Patient Experiences of Cancer Care survey. This survey includes 13 scales about different aspects of care and an overall rating of care. Multivariable linear regression analysis was used to identify factors associated with perceived follow-up quality.ResultsPatients reported positive experiences at first follow-up for 9 of 13 scales, with mean (M) scores ranging from 79 to 97 (on a 0–100 response scale). Patients reported most frequently (over 70%) suboptimal care regarding symptom management (84%; M = 44, SD = 37), health promotion (75%; M = 45, SD = 39), and physician’s knowledge about patients’ life (84%; M = 65, SD = 23). Overall, patients’ lower quality of follow-up ratings were associated with younger age, higher education level, having more than one comorbid condition, having undergone primary surgery, and experiencing significant symptoms.ConclusionPatients with prostate cancer are generally positive about their initial, hospital-based follow-up care. However, efforts should be made to improve symptom management, health promotion, and physician’s knowledge about patients’ life. These findings point to areas where prostate cancer follow-up care can be improved.

Additional file 1: Table S1. Search strategy for MEDLINE (accessed through PubMed), Embase (accessed through Ovid Platform), PsycINFO (accessed through Ovid Platform) and CINAHL.

Purpose: The purpose of this study is to develop a European Organisation for Research and Treatment of Cancer Quality of Life Group (EORTC QLG) questionnaire that captures the full range of physical, mental, and social health-related quality of life (HRQOL) issues relevant to disease-free cancer survivors. In this phase III study, we pretested the provisional core questionnaire (QLQ-SURV111) and aimed to identify essential and optional scales. Methods: We pretested the QLQ-SURV111 in 492 cancer survivors from 17 countries with one of 11 cancer diagnoses. We applied the EORTC QLG decision rules and employed factor analysis and item response theory (IRT) analysis to assess and, where necessary, modify the hypothesized questionnaire scales. We calculated correlations between the survivorship scales and the QLQ-C30 summary score and carried out a Delphi survey among healthcare professionals, patient representatives, and cancer researchers to distinguish between essential and optional scales. Results: Fifty-four percent of the sample was male, mean age was 60 years, and, on average, time since completion of treatment was 3.8 years. Eleven items were excluded, resulting in the QLQ-SURV100, with 12 functional and 9 symptom scales, a symptom checklist, 4 single items, and 10 conditional items. The essential survivorship scales consist of 73 items. Conclusions: The QLQ-SURV100 has been developed to assess comprehensively the HRQOL of disease-free cancer survivors. It includes essential and optional scales and will be validated further in an international phase IV study. Implications for Cancer Survivors: The availability of this questionnaire will facilitate a standardized and robust assessment of the HRQOL of disease-free cancer survivors.

BACKGROUND Follow‐up care for a growing population of survivors of lymphoma and chronic lymphocytic leukemia (CLL) together with the adverse effects these survivors may experience as a result of their cancer and treatment have led to more pressure being placed on health care services. The objectives of the current study were to: 1) compare the use of medical care services by survivors with that of a normative population; 2) evaluate the use of medical and psychosocial care services among distressed and nondistressed survivors; and 3) identify associated sociodemographic and clinical factors. METHODS Survivors of lymphoma and CLL diagnosed between 1999 and 2012 were selected via the population‐based Netherlands Cancer Registry and completed the Hospital Anxiety and Depression Scale questionnaire and questions regarding health care. Outcomes were compared with an age‐matched and sex‐matched normative population. RESULTS A total of 1444 survivors responded (69%). Survivors of lymphoma and CLL contacted their general practitioner (3.8 vs 2.3; P, Follow‐up care for a growing population of survivors of lymphoma and chronic lymphocytic leukemia (CLL) together with the adverse effects they may experience as a result of their cancer and treatment have increased pressure on health care services. Survivors of lymphoma and CLL, especially psychologically distressed survivors, report an increased use of health care services compared with a normative population without cancer.

To understand cultural differences in the impact of cancer (IOC), by (1) performing an independent psychometric evaluation of the Dutch version of the Impact of Cancer Scale version 2 (IOCv2) in a non-Hodgkin lymphoma (NHL) sample and (2) examining differences between Dutch and American NHL survivors in perceived impact of cancer and identify associations with socio-demographic and clinical characteristics.

Purpose Attrition and subsequent missing data pose a challenge in longitudinal research in oncology. This study examined factors associated with attrition in the PROFILES registry, and its impact on observed health-related quality of life (HRQOL) estimates. Methods Sociodemographic, clinical, and HRQOL data were collected annually from a cohort of 2625 colorectal cancer survivors between 2010 and 2015. Participant characteristics according to time of dropout were compared using analysis of variance and chi-square tests. Predictors of attrition were examined in logistic regression analysis. Multilevel linear mixed models were constructed to investigate associations between attrition and HRQOL over time. Results Participants who dropped out were more likely to be female (OR = 1.23, CI = 1.02–1.47), older (OR = 1.20, CI = 1.09–1.33), less educated (OR = 1.64, CI = 1.30–2.11), and to have depressive symptoms (OR = 1.84, CI = 1.39–2.44) than full responders, and less likely to have high socioeconomic status (OR = 0.74, CI = 0.61–0.94). Participants who dropped out earlier reported significantly worse HRQOL, functioning, and psychosocial symptoms, which declined at a steeper rate over time, than full responders. Conclusions Cancer survivors’ HRQOL may be overestimated in longitudinal research due to attrition of the most unwell participants. Implications for Cancer Survivors Cancer survivors with the poorest health are at risk of dropping out of PROFILES and possibly withdrawing from other activities. Optimizing participation in PROFILES—a potential mechanism for providing information and access to support—is an avenue for keeping this group engaged. Electronic supplementary material The online version of this article (10.1007/s11764-019-00793-7) contains supplementary material, which is available to authorized users.