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01 april 2023, Item does not contain fulltext, OBJECTIVE: High psychological distress is reported by one third of colorectal cancer survivors (CRCS). However, intervention studies for CRCS have reported low participation rates. In this study, reasons for non-participation and low uptake in a psychological intervention trial were investigated. METHODS: CRCS were recruited for a randomized clinical trial on the efficacy of blended cognitive behavior therapy for psychological distress via databases, follow-up consultations, advertisements and an ongoing population-based study. The recruitment flow and reasons for non-participation were analyzed for patients recruited between 2016 and 2020. Subgroups were compared based on demographic, clinical and screening data. High distress as study entry criterion was measured with the Distress Thermometer (DT ≥ 5) and the problem list (PL). RESULTS: From all recruitment methods together, 1326 CRCS responded to the invitation letter of whom 510 (38%) were interested in receiving a screening questionnaire. Interested CRCS were significantly younger than non-interested CRCS (p < 0.001). Most non-interested CRCS reported having no complaints. Of interested CRCS, 448 (88%) completed screening with the DT of which 213 (48%) CRCS scored above the DT cutoff for high distress. The majority expressed no need for help resulting in 84 (4% of eligible) CRCS included in the trial. Younger age, shorter time since diagnosis and more problems on the PL were positively related to participation. CONCLUSIONS: In this study a low participation rate was found. However, patients with high distress and most in need for help were included in the trial. For future research it is recommended to perform pilot- and feasibility studies to optimize recruitment.

Contains fulltext : 253507.pdf (Publisher’s version ) (Open Access), Simple Summary: An emerging group of advanced cancer patients are living long term on systemic treatment. However, studies examining the psychosocial impact of this prolonged cancer treatment trajectory are scarce. This scoping review summarizes findings on these psychosocial issues, as well as the terminology used to refer to these patients. Prominent psychosocial outcomes included uncertainty, anxiety, and fear of disease progression or death, hope, loss and worries about loved ones and changes in social life. These themes were not extensively investigated in research using validated psychological questionnaires. More quantitative research in this area should be conducted to further understand these psychological constructs. A large variety of terms used to refer to the patient group was observed, which calls for a uniform definition to better address this specific patient group in research and in practice. By identifying key themes and gaps in the literature, directions for future research and clinical practice can be provided. Abstract: (1) Background: Studies examining the psychosocial impact of living long term on systemic treatment in advanced cancer patients are scarce. This scoping review aimed to answer the research question "What has been reported about psychosocial factors among patients living with advanced cancer receiving life-long systemic treatment?", by synthesizing psychosocial data, and evaluating the terminology used to address these patients; (2) Methods: This scoping review was conducted following the five stages of the framework of Arksey and O'Malley (2005); (3) Results: 141 articles published between 2000 and 2021 (69% after 2015) were included. A large variety of terms referring to the patient group was observed. Synthesizing qualitative studies identified ongoing uncertainty, anxiety and fear of disease progression or death, hope in treatment results and new treatment options, loss in several aspects of life, and worries about the impact

Introduction A better understanding of the molecular, genetic and immunological characteristics of cancer and the introduction of new systemic treatment regimens in the last decades, has led to better treatment outcomes and increased survival rates for patients with previously short lived cancers. However, there is no uniform description to refer to this growing group of patients with advanced cancer who now respond to new systemic treatments for longer periods. Furthermore, little is known about the unique psychological challenges these patients face, living with ongoing uncertainty about the course of their disease and life expectancy. The objective of this scoping review is to identify the psychological aspects experienced by, and the definitions used to refer to patients with advanced cancer receiving lifelong systemic treatment. Methods and analysis This review will be among the first to summarise literature on the psychological issues in the growing group of advanced cancer patients undergoing long-Term systemic treatment. Articles will be retrieved from six databases (MEDLINE, Embase, Web of Science, PsycINFO, CINAHL and the Cochrane Database of Systematic Reviews) and reviewed for eligibility by two investigators independently. Definitions and psychological challenges will be extracted and narratively summarised following a descriptive approach. Furthermore, results will contribute in providing a uniform definition for this patient group, and help to identify knowledge gaps to give direction to further research in this field. Ethics and dissemination No ethical approval is required. The results of the scoping review will be submitted for publication to a scientific journal and presented at relevant conferences.

Contains fulltext : 231142.pdf (publisher's version ) (Open Access), Introduction: A better understanding of the molecular, genetic and immunological characteristics of cancer and the introduction of new systemic treatment regimens in the last decades, has led to better treatment outcomes and increased survival rates for patients with previously short lived cancers. However, there is no uniform description to refer to this growing group of patients with advanced cancer who now respond to new systemic treatments for longer periods. Furthermore, little is known about the unique psychological challenges these patients face, living with ongoing uncertainty about the course of their disease and life expectancy. The objective of this scoping review is to identify the psychological aspects experienced by, and the definitions used to refer to patients with advanced cancer receiving lifelong systemic treatment. Methods and analysis: This review will be among the first to summarise literature on the psychological issues in the growing group of advanced cancer patients undergoing long-term systemic treatment. Articles will be retrieved from six databases (MEDLINE, Embase, Web of Science, PsycINFO, CINAHL and the Cochrane Database of Systematic Reviews) and reviewed for eligibility by two investigators independently. Definitions and psychological challenges will be extracted and narratively summarised following a descriptive approach. Furthermore, results will contribute in providing a uniform definition for this patient group, and help to identify knowledge gaps to give direction to further research in this field. Ethics and dissemination: No ethical approval is required. The results of the scoping review will be submitted for publication to a scientific journal and presented at relevant conferences.

Introduction A better understanding of the molecular, genetic and immunological characteristics of cancer and the introduction of new systemic treatment regimens in the last decades, has led to better treatment outcomes and increased survival rates for patients with previously short lived cancers. However, there is no uniform description to refer to this growing group of patients with advanced cancer who now respond to new systemic treatments for longer periods. Furthermore, little is known about the unique psychological challenges these patients face, living with ongoing uncertainty about the course of their disease and life expectancy. The objective of this scoping review is to identify the psychological aspects experienced by, and the definitions used to refer to patients with advanced cancer receiving lifelong systemic treatment. Methods and analysis This review will be among the first to summarise literature on the psychological issues in the growing group of advanced cancer patients undergoing long-Term systemic treatment. Articles will be retrieved from six databases (MEDLINE, Embase, Web of Science, PsycINFO, CINAHL and the Cochrane Database of Systematic Reviews) and reviewed for eligibility by two investigators independently. Definitions and psychological challenges will be extracted and narratively summarised following a descriptive approach. Furthermore, results will contribute in providing a uniform definition for this patient group, and help to identify knowledge gaps to give direction to further research in this field. Ethics and dissemination No ethical approval is required. The results of the scoping review will be submitted for publication to a scientific journal and presented at relevant conferences.

Contains fulltext : 226497.pdf (publisher's version ) (Open Access), Purpose: Previous studies suggest one-third of breast cancer survivors (BCS) experience elevated fear of cancer recurrence (FCR) and that it remains stable. Most studies include long assessment intervals and aggregated group data. This study aimed to describe the individual trajectories of FCR when assessed monthly using both a statistical and descriptive approach. Methods: Participants were curatively-treated BCS 0-5 years post-surgery. Questionnaire data were collected monthly for 12 months. Primary outcome was FCR [Cancer Worry Scale (CWS)]. For the descriptive approach, 218 participants were classified as low (CWS <= 13 at each assessment), high (CWS >= 14 at each assessment), or fluctuating FCR (CWS scores above and below cut-off). Latent class growth analysis (LCGA; n = 377) was conducted to identify trajectories over time. Results: Around 58% of the women reported fluctuating CWS scores, 22% reported a consistently high and 21% consistently low course. Results of the LCGA confirmed the three-class approach including a stable high FCR group (13%), a low FCR group (40%), and a moderate FCR group (47%). Both the moderate and low scoring groups reported declining scores over time. Younger patients, higher educated patients, and those less satisfied with the medical treatment were more likely to belong to the moderate or high trajectory. Conclusion: Assessed monthly, the majority of BCS report fluctuating levels of FCR. Stepped-care models should assess FCR on multiple occasions before offering tailored interventions.

Contains fulltext : 226232pub.pdf (Publisher’s version ) (Closed access)

OBJECTIVE:To develop and evaluate the usability of iConquerFear, an online self-management adaptation of an efficacious face-to-face therapist-delivered treatment for fear of cancer recurrence (FCR). METHODS:iConquerFear development was theory based and person based. Development was guided by Ritterband et al's behaviour change model for internet interventions. iConquerFear end users (cancer survivors) provided iterative feedback in accordance with Yardley et al's person-based approach to maximise engagement and usability. Online focus groups and cognitive interviews were conducted to evaluate the usability of iConquerFear. Discussions were recorded, transcribed verbatim, and thematically analysed. RESULTS:Five online FCR modules were developed. Twenty-three cancer survivors (47% of those eligible) participated; 11/23 (58%) were breast cancer survivors, and average age was 53 years (SD = 10.8). Thematic saturation was reached after six focus groups (n = 16) and seven individual think-aloud interviews. Thematic analysis produced five overarching themes: easy navigation essential; satisfaction and engagement with content; flexible access is key; normalising and empowering; and a useful first step. CONCLUSIONS:Online self-management interventions like iConquerFear have the potential to address the unmet supportive care needs reported by burgeoning numbers of cancer survivors. However, that potential may not be realised unless interventions are rigorously developed and user tested, as benefits are constrained by limited engagement. Themes from the usability testing of iConquerFear highlight the importance of developing flexible, tailored, interactive, and contextual online self-management interventions for people with cancer.

Contains fulltext : 215607.pdf (publisher's version ) (Open Access), PURPOSE: Fear of cancer recurrence (FCR) is a significantly distressing problem that affects a substantial number of patients with and survivors of cancer; however, the overall efficacy of available psychological interventions on FCR remains unknown. We therefore evaluated this in the present systematic review and meta-analysis. METHODS: We searched key electronic databases to identify trials that evaluated the effect of psychological interventions on FCR among patients with and survivors of cancer. Controlled trials were subjected to meta-analysis, and the moderating influence of study characteristics on the effect were examined. Overall quality of evidence was evaluated using the GRADE system. Open trials were narratively reviewed to explore ongoing developments in the field (PROSPERO registration no.: CRD42017076514). RESULTS: A total of 23 controlled trials (21 randomized controlled trials) and nine open trials were included. Small effects (Hedges's g) were found both at postintervention (g = 0.33; 95% CI, 0.20 to 0.46; P < .001) and at follow-up (g = 0.28; 95% CI, 0.17 to 0.40; P < .001). Effects at postintervention of contemporary cognitive behavioral therapies (CBTs; g = 0.42) were larger than those of traditional CBTs (g = 0.24; beta = .22; 95% CI, .04 to .41; P = .018). At follow-up, larger effects were associated with shorter time to follow-up (beta = -.01; 95% CI, -.01 to -.00; P = .027) and group-based formats (beta = .18; 95% CI, .01 to .36; P = .041). A GRADE evaluation indicated evidence of moderate strength for effects of psychological intervention for FCR. CONCLUSION: Psychological interventions for FCR revealed a small but robust effect at postintervention, which was largely maintained at follow-up. Larger postintervention effects were found for contemporary CBTs that were focused on processes of cognition-for example, worry, rumination, and attentional bias-rather than the content, and aimed to change the way in which the individual relates to his

Contains fulltext : 204018.pdf (publisher's version ) (Open Access)

Contains fulltext : 208045.pdf (publisher's version ) (Open Access)

Background: Patients with head and neck cancer (HNC) are vulnerable to fear of cancer recurrence (FCR) and psychiatric morbidity. We investigated the prevalence of high FCR and demographic, clinical, psychological, and psychiatric factors associated with high FCR prior to the start of the treatment. Methods: In a cross-sectional substudy of the large ongoing prospective NET-QUBIC study questionnaires and psychiatric interviews of 216 patients newly diagnosed with HNC were analyzed. Results: High FCR was observed in 52.8% of patients and among those 21.1% also had a lifetime history of selected anxiety or major depressive disorder. FCR was not related to any clinical characteristics; however, younger age, higher anxiety symptoms, introversion, greater needs for support regarding sexuality, and being an exsmoker were significantly associated with higher FCR. Conclusion: Factors associated with high FCR provide us with a better conceptual understanding of FCR in patients newly diagnosed with HNC.

PURPOSE: ConquerFear is an efficacious intervention for fear of cancer recurrence (FCR) that demonstrated greater improvements than an attention control (relaxation training) in a randomized controlled trial. This study aimed to determine mediators and moderators of the relative treatment efficacy of ConquerFear versus relaxation. METHODS: One hundred and fifty-two cancer survivors completed 5 therapy sessions and outcome measures before and after intervention and at 6 months' follow-up. We examined theoretically relevant variables as potential mediators and moderators of treatment outcome. We hypothesized that metacognitions and intrusions would moderate and mediate the relationship between treatment group and FCR level at follow-up. RESULTS: Only total FCR score at baseline moderated treatment outcome. Participants with higher levels of FCR benefited more from ConquerFear relative to relaxation on the primary outcome. Changes in metacognitions and intrusive thoughts about cancer during treatment partially mediated the relationship between treatment group and FCR. CONCLUSIONS: These results show that ConquerFear is relatively more effective than relaxation for those with overall higher levels of FCR. The mediation analyses confirmed that the most likely mechanism of treatment efficacy was the reduction in unhelpful metacognitions and intrusive thoughts during treatment, consistent with the theoretical framework underpinning ConquerFear. IMPLICATIONS FOR CANCER SURVIVORS: ConquerFear is a brief, effective treatment for FCR in cancer survivors with early-stage disease. The treatment works by reducing intrusive thoughts about cancer and changing beliefs about worry and is particularly helpful for people with moderate to severe FCR.

Contains fulltext : 196791.pdf (publisher's version ) (Open Access)

Contains fulltext : 197161.pdf (Publisher’s version ) (Open Access)

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Item does not contain fulltext, Background: Indigenous people experience poorer cancer survival outcomes compared with non-Indigenous people. Currently, there is growing awareness of poor health literacy as a determinant of cancer outcomes. However, little attention has been given to researching cancer-related health literacy amongst Indigenous people. Objectives: To systematically review empirical studies of cancer health literacy amongst Indigenous people worldwide. Methods: Articles were identified in Medline (1946-2013); Pre-Medline; CINAHL; PsycINFO (1967-2013); PubMed; Current Contents/All Editions (1993-2013); Allied Health and Complimentary Medicine (1985-2013), and in the reference lists of retrieved articles and by expert consultation. 64 abstracts were screened for inclusion and 16 articles were retained. Results: There is a paucity of high-quality research concerning of health literacy amongst Indigenous cancer patients. No articles used formal measures of health literacy and data on the prevalence of health literacy was not reported. Of the 7 articles describing interventions only one included a control group and the remainder employed quasi-experimental methods. Conclusions: Research is needed to explore the cultural relevance of existing measures of health literacy and to document the prevalence of health literacy amongst Indigenous people with cancer. A better understanding of Indigenous cancer patients' health literacy is required before health literacy interventions can be designed to improve Indigenous cancer outcomes.

Item does not contain fulltext, Objective: Fear of cancer recurrence (FCR) is one of the major existential unmet needs of cancer survivors. Due to growing availability of evidenced-based interventions for high FCR, valid and reliable brief measures of FCR are needed. This study aimed to validate the 6-item Cancer Worry Scale (CWS) and to establish a cut-off score for high FCR. Methods: Participants in this study were 1033 cancer survivors and patients recruited as part of 5 existing studies on FCR involving patients and survivors with gastro-intestinal stromal tumors, colorectal, breast, and prostate cancer. De-identified data of the CWS, Fear of Cancer Recurrence Inventory (FCRI), Impact of Event Scale, Hospital Anxiety and Depression Scale, and EORTC-QLQ-C30 were amalgamated for the analyses. Confirmatory factor analysis of the CWS was performed. Sensitivity and specificity were tested with the FCRI as gold standard. Results: Results confirmed that the 6-item version of the CWS maintained good construct validity, convergent and divergent validity, and high internal consistency (alpha 0.90). The optimal cut-off for the 6-item CWS was 9 versus 10 using the 12 vs 13 FCRI-SF score (sensitivity 82%, specificity 83%) and the 15 vs 16 FCRI-SF score (sensitivity 88%, specificity 73%). Using the highest FCRI-SF cut-off (21 vs 22), the optimal CWS cut-off was 11 vs 12 (sensitivity 88%, specificity 81%). Conclusions: The present results provide researchers and clinicians with a brief valid and reliable measure of FCR which is suitable for measuring FCR in cancer patients and survivors.

Item does not contain fulltext, In 2013, 3 systematic reviews of fear of cancer recurrence (FCR) and its predictors were published. All 3 concurred that FCR is a highly prevalent problem and amongst the largest unmet needs of cancer survivors, even 5 or more years after treatment. However, between them they identified only 1 study that had investigated the relationship between death anxiety and FCR. This is surprising because it is well acknowledged that a diagnosis of cancer, a potentially life-threatening illness, is associated with a number of existential issues that give rise to psychological sequelae such as intrusive thoughts about death and other post-traumatic symptoms. Outside the cancer literature, there has recently been a call to identify death anxiety as a transdiagnostic construct that underlies many anxiety disorders even in healthy people. And yet, the relevance of death anxiety to FCR has not been studied. We explore the barriers to the study of death anxiety and FCR and the reasons that a potential link between the 2 might have important theoretical and clinical implications. We conclude that establishing the relationship between death anxiety, FCR and other existential issues is essential in order to fully understand FCR, particularly in the context of advanced disease. We further conclude that whether death anxiety underlies FCR has important clinical implications which would potentially allow us to optimise currently available evidence-based treatments.

Contains fulltext : 190974.pdf (Publisher’s version ) (Open Access), OBJECTIVE: High fear of cancer recurrence (FCR) is a frequently reported problem among cancer patients. Previous research has shown that younger age is associated with higher levels of FCR. However, little attention has been given to date about how FCR manifests itself among adolescent and young adult (AYA) cancer patients. This study explores the prevalence, correlates of high FCR, and its association with HRQoL in cancer patients in their late adolescence or young adulthood. METHODS: Seventy-three AYA cancer patients, aged 18-35 years at diagnosis, consulted the AYA team of the Radboud University Medical Center completed questionnaires including the Cancer Worry Scale (CWS), Quality of Life-Cancer Survivors (QOL-CS), and Hospital Anxiety and Depression Scale (HADS). Sociodemographic and medical data was collected by self-reported questionnaire. RESULTS: Forty-five participants experienced high FCR (62%), which was higher than the 31-52% reported in previous studies among mixed adult cancer patient samples. Sociodemographic and medical variables were not associated with levels of FCR. High FCR was significantly associated with lower levels of social and psychological functioning and overall HRQoL and higher levels of anxiety and psychological distress. CONCLUSION: Results illustrate that FCR is a significant problem among AYA cancer patients consulting an AYA team, with participants reporting higher levels of FCR than cancer patients of mixed ages. Health care providers should pay specific attention to this problem by screening and the provision of appropriate psychosocial care when needed.

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