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Adopting and maintaining favorable lifestyle changes can be challenging for postmenopausal breast cancer (PMBC) survivors. Understanding their experiences and needs can help tailor lifestyle support throughout their care journey. This qualitative study explored 1) perceived determinants relevant for favorable lifestyle change among PMBC survivors, 2) the needs and preferences of PMBC survivors regarding lifestyle support, and 3) perceived determinants relevant for preferred timing of lifestyle support among PMBC survivors. A total of 42 in-depth longitudinal interviews were conducted at one year (n = 24) and 1.5 years (n = 21) following a breast cancer diagnosis. Data were analyzed using thematic analysis. Our analysis revealed 12 main themes: 1) 3 themes describe determinants that may affect the process of favorable lifestyle change (type of lifestyle behavior, previous attempts to change lifestyle, comorbidities), 2) 3 themes express PMBC survivors' needs for lifestyle support from health care professionals (HCPs) (need for information, need for activation by lifestyle support, need for effective communication by HCPs), 3) 6 themes describe determinants influencing PMBC survivors' preferred timing of addressing these needs (type of treatment, coping style, previous experience with cancer, personality, motivation for lifestyle change, social support). Lifestyle support should consider psychological and physical effects of breast cancer diagnosis and treatment, which may hinder some PMBC survivors' ability to make favorable lifestyle choices. Our results suggest that HCPs should offer ongoing individualized lifestyle support throughout the care continuum to meet the varied needs of PMBC survivors.

Peripheral neuropathy (PN) and accelerated biological ageing are common in colorectal cancer (CRC) patients. In vitro and in vivo studies suggest links between biological ageing, oxidative stress, and PN. This longitudinal study examined associations between markers of accelerated ageing (leukocyte telomere length (LTL) and plasma NAD + levels) and oxidative stress (protein carbonyl content (PCC)) with PN in CRC patients. Newly diagnosed CRC patients (n = 457) were recruited in a Dutch prospective cohort. LTL, plasma NAD + levels, PCC, and PN (self-reported using the EORTC QLQ-CIPN20) were measured at baseline (prior to treatment), 1-year, and 2-years follow-up. Associations between biomarkers and PN were analyzed using a confounder-adjusted linear mixed model. Longer LTL was associated with higher PN scores, including Sensory PN (SPN) and Motor PN (MPN), while lower plasma NAD + levels were linked to higher SPN complaints (β:-2.29;95%CI:-4.31,-.27). These associations were primarily driven by inter-individual changes over time. Among chemotherapy-treated patients, lower plasma NAD + levels were associated with higher total PN scores, SPN, and autonomic PN symptoms. Lower NAD + levels were longitudinally associated with higher SPN complaints, especially among those treated with chemotherapy. These findings emphasize the potential for targeting NAD + metabolism to mitigate PN in CRC.

IntroductionThe number of gynaecological cancer survivors is increasing and there is a need for a more sustainable model of follow-up care. Today’s follow-up model is time-consuming and patients have reported unmet needs regarding information about their cancer and strategies for managing the consequences of treatment. The main aim of this study is to assess health-related empowerment—in terms of patient education, psychosocial support, and promotion of physical activity—in a new follow-up model by comparing it to standard follow-up in a quasi-randomised study involving intervention hospitals and control hospitals.Methods and analysisAt the intervention hospitals, patients will be stratified by risk of recurrence and late effects to either 1 or 3 years’ follow-up. Nurses will replace doctors in half of the follow-up visits and focus in particular on patient education, self-management and physical activity. They will provide patients with information and guide them in goal setting and action planning. These measures will be reinforced by a smartphone application for monitoring symptoms and promoting physical activity. At the control hospitals, patients will be included in the standard follow-up programme. All patients will be asked to complete questionnaires at baseline and after 3, 6, 12, 24 and 36 months. Blood samples will be collected for biobanking at 3, 12 and 36 months. The primary outcome is health-related empowerment. Secondary outcomes include health-related quality of life, adherence to physical activity recommendations, time to recurrence, healthcare costs and changes in biomarkers. Changes in these outcomes will be analysed using generalised linear mixed models for repeated measures. Type of hospital (intervention or control), time (measurement point), and possible confounders will be included as fixed factors.Ethics and disseminationThe study is approved by the Regional Committee for Medical Research Ethics (2019/11093). Dissemination of findings will occur at the local, national and international levels.Trial registration numberNCT04122235.

Backround The number of cancer survivors is growing steadily and increasingly, clinical trials are being designed to include long-term follow-up to assess not only survival, but also late effects and health-related quality of life (HRQOL). Therefore it is is essential to develop patient-reported outcome measures (PROMs) that capture the full range of issues relevant to disease-free cancer survivors. The objectives of this project are: 1) to develop a European Organisation for Research and Treatment of Cancer (EORTC) questionnaire that captures the full range of physical, mental and social HRQOL issues relevant to disease-free cancer survivors; and 2) to determine at which minimal time since completion of treatment the questionnaire should be used. Methods We reviewed 134 publications on cancer survivorship and interviewed 117 disease-free cancer survivors with 11 different types of cancer across 14 countries in Europe to generate an exhaustive, provisional list of HRQOL issues relevant to cancer survivors. The resulting issue list, the EORTC core questionnaire (QLQ-C30), and site-specific questionnaire modules were completed by a second group of 458 survivors. Results We identified 116 generic survivorship issues. These issues covered body image, cognitive functioning, health behaviors, negative and positive outlook, health distress, mental health, fatigue, sleep problems, physical functioning, pain, several physical symptoms, social functioning, and sexual problems. Patients rated most of the acute symptoms of cancer and its treatment (e.g. nausea) as no longer relevant approximately one year after completion of treatment. Conclusions Compared to existing cancer survivorship questionnaires, our findings underscore the relevance of assessing issues related to chronic physical side effects of treatment such as neuropathy and joint pain. We will further develop a core survivorship questionnaire and three site-specific modules for disease-free adult cancer survivors who are at least one year post-treatment.

Purpose The use of Patient-Reported Outcome Measures (PROMs) for individual patient management within clinical practice is becoming increasingly important. New evidence about graphic visualization formats for PROMs scores has become available. This systematic literature review evaluated evidence for graphic visualization formats of PROMs data in clinical practice for patients and clinicians, for both individual and group level PROMs data. Methods Studies published between 2000 and 2020 were extracted from CINAHL, PubMed, PsychInfo, and Medline. Studies included patients ≥ 18 years old in daily clinical practice. Papers not available in English, without full-text access, or that did not specifically describe visualization of PROMs data were excluded. Outcomes were: visualization preferences; interpretation accuracy; guidance for clinical interpretation. Results Twenty-five out of 789 papers were included for final analysis. Most frequently studied formats were: bar charts, line graphs, and pie charts. Patients preferred bar charts and line graphs as these were easy and quick for retrieving information about their PROMs scores over time. Clinicians’ interpretation accuracy and preferences were similar among graphic visualization formats. Scores were most often compared with patients’ own previous scores; to further guide clinical interpretation, scores were compared to norm population scores. Different ‘add-ons’ improved interpretability for patients and clinicians, e.g. using colors, descriptions of measurement scale directionality, descriptive labels, and brief definitions. Conclusion There was no predominant graphical visualization format approach in terms of preferences or interpretation accuracy for both patients and clinicians. Detailed clarification of graph content is essential. Plain English summary Patient-Reported Outcome Measures (PROMs) capture patients' self-reported health through the use of questionnaires. PROMs measure health related quality of life, daily functioning, and symptom experience, which are becoming increasingly important to incorporate in clinical practice for individual patient management. To present PROMs within clinical practice, raw or summarized PROMs scores can be visualized in graphical formats. To be useful during clinical encounters, both patients and clinicians ought to interpret such formats correctly. New evidence about graphic visualization formats for PROMs scores has become available. Therefore, we systematically reviewed the literature to evaluate evidence for graphic visualization formats of PROMs data in clinical practice. In 25 included papers, most studies used graphical formats like bar charts, line graphs, and pie charts for presenting PROMs scores. There was no predominant graphical visualization format approach in terms of preferences or interpretation accuracy for both patients and clinicians. Patients preferred bar charts and line graphs as these were easy and quick for retrieving information about their PROMs scores over time. Clinicians’ interpretation accuracy and preferences were similar among graphic visualization formats. The graphical interpretation of PROMs data for patients and clinicians can be improved by using colors, descriptions of measurement scale directionality, descriptive labels, and brief definitions.

Purpose Cancer‐related fatigue (CRF) is one of the most prevalent symptoms experienced by cancer survivors. However, researchers are only beginning to elucidate the risk factors, underlying mechanism(s), and its association with other outcomes. Research on the association between CRF and mortality is limited. Methods The study sample comprised 2059 short‐term (<5 years postdiagnosis) cancer survivors from four PROFILES registry studies. Survivors diagnosed with stage I‐III colorectal cancer (CRC) or stage I‐III endometrial cancer (EC), with no evidence of disease, were identified and followed‐up by the Netherlands Cancer Registry. Fatigue was assessed with the Fatigue Assessment Scale. Cox proportional hazards models adjusted for demographic, clinical, and lifestyle characteristics were performed to assess the association of CRF with all‐cause mortality. Date of censoring was February 1, 2017. Results Prevalence of CRF varied between 35.8% (male CRC) and 43.6% (female CRC). After a median follow‐up period of 9.0 years, a total of 408 survivors (20%) had died. CRF was associated with increased all‐cause mortality in male CRC survivors (HRadj = 1.75, 95% CI [1.31‐2.33]). This association remained statistically significant after excluding survivors experiencing anhedonia. For female CRC (HRadj = 1.32, 95% CI [0.90‐1.97]) and EC (HRadj = 1.27, 95% CI [0.84‐1.90]) survivors, there was no significant association with all‐cause mortality for the fatigued group in multivariable analyses. Conclusion Our study found that CRF is significantly associated with all‐cause mortality in male CRC survivors, irrespective of potential confounders. This result suggests that clinicians should increase their attention towards the recognition and treatment of CRF. Our study found that cancer‐related fatigue is significantly associated with all‐cause mortality in male colorectal cancer survivors. This result suggests that clinicians should increase their attention towards the recognition and treatment of cancer‐related fatigue.

Uptake of decision aids (DAs) in daily routine is low, resulting in limited knowledge about successful DA implementation at a large scale. We assessed implementation rates after multi-regional implementation of three different prostate cancer (PCa) treatment DAs and patient-perceived barriers and facilitators to use a DA. Thirty-three hospitals implemented one out of the three DAs in routine care. Implementation rates for each DA were calculated per hospital. After deciding about PCa treatment, patients (n = 1033) completed a survey on pre-formulated barriers and facilitators to use a DA. Overall DA implementation was 40%. For each DA alike, implementation within hospitals varied from incidental (< 10% of eligible patients receiving a DA) to high rates of implementation (> 80%). All three DAs were evaluated positively by patients, although concise and paper DAs yielded higher satisfaction scores compared with an elaborate online DA. Patients were most satisfied when they received the DA within a week after diagnosis. Pre-formulated barriers to DA usage were experienced by less than 10% of the patients, and most patients confirmed the facilitators. Many patients received a DA during treatment counseling, although a wide variation in uptake across hospitals was observed for each DA. Most patients were satisfied with the DA they received. Sustained implementation of DAs in clinical routine requires further encouragement and attention.

Background Understanding of the physical, functional and psychosocial health problems and needs of cancer survivors requires cross-national and cross-cultural standardization of health-related quality of life (HRQoL) questionnaires that capture the full range of issues relevant to cancer survivors. To our knowledge, only one study has investigated in a comprehensive way whether a questionnaire used to evaluate HRQoL in cancer patients under active treatment is also reliable and valid when used among (long-term) cancer survivors. In this study we evaluated, in an international context, the psychometrics of HRQoL questionnaires for use among long-term, disease-free, survivors of testicular and prostate cancer. Methods In this cross-sectional study, we recruited long-term survivors of testicular and prostate cancer from Northern and Southern Europe and from the United Kingdom who had participated in two phase III EORTC clinical trials. Participants completed the SF-36 Health Survey, the EORTC QLQ-C30 questionnaire, the QLQ-PR25 (for prostate cancer) or the QLQ-TC26 (for testicular cancer) questionnaires, and the Impact of Cancer questionnaire. Testicular cancer survivors also completed subscales from the Nordic Questionnaire for Monitoring the Age Diverse Workforce. Results Two hundred forty-two men (66% response rate) were recruited into the study. The average time since treatment was more than 10 years. Overall, there were few missing questionnaire data, although scales related to sexuality, satisfaction with care and relationship concerns of men without partners were missing in more than 10% of cases. Debriefing showed that in general the questionnaires were accepted well. Many of the survivors scored at the upper extremes of the questionnaires, resulting in floor and ceiling effects in 64% of the scales. All of the questionnaires investigated met the threshold of 0.70 for group level reliability, with the exception of the QLQ-TC26 (mean reliability .64) and the QLQ-PR25 (mean reliability .69). The questionnaires were able to discriminate clearly between patients with and without comorbid conditions. Conclusions The currently available HRQoL questionnaires exhibit acceptable psychometric properties and were well received by patients, but additional efforts are needed to ensure that the full range of survivor-specific issues is assessed.

Patients with melanoma receiving immunotherapy with immune-checkpoint inhibitors often experience immune-related adverse events, cancer-related fatigue, and emotional distress, affecting health-related quality of life (HRQoL) and clinical outcome to immunotherapy. eHealth tools can aid patients with cancer in addressing issues, such as adverse events and psychosocial well-being, from various perspectives. This study aimed to explore the effect of the Cancer Patients Better Life Experience (CAPABLE) system, accessed through a mobile app, on HRQoL compared with a matched historical control group receiving standard care. CAPABLE is an extensively tested eHealth app, including educational material, remote symptom monitoring, and well-being interventions. This prospective pilot study compared an exploratory cohort that received the CAPABLE smartphone app and a multisensory smartwatch for 6 months (intervention) to a 2:1 individually matched historical prospective control group. HRQoL data were measured with the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Core 30 at baseline (T0), 3 months (T1), and 6 months (T2) after start of treatment. Mixed effects linear regression models were used to compare HRQoL between the 2 groups over time. From the 59 eligible patients for the CAPABLE intervention, 31 (53%) signed informed consent to participate. Baseline HRQoL was on average 10 points higher in the intervention group compared with controls, although equally matched on baseline and clinical characteristics. When correcting for sex, age, disease stage, and baseline scores, an adjusted difference in fatigue of -5.09 (95% CI -15.20 to 5.02, P=.32) at month 3 was found. No significant nor clinically relevant adjusted differences on other HRQoL domains over time were found. However, information satisfaction was significantly higher in the CAPABLE group (β=8.71, 95% CI 1.54-15.88, P=.02). The intervention showed a limited effect on HRQoL, although there was a small improvement in fatigue at 3 months, as well as information satisfaction. When aiming at personalized patient and survivorship care, further optimization and prospective investigation of eHealth tools is warranted.