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Purpose: Elevated levels of maternal cortisol have been hypothesized as the intermediate process between symptoms of depression and psychosocial stress during pregnancy and adverse birth outcomes. Therefore, we examined associations between cortisol levels in the second trimester of pregnancy and risks of three common birth outcomes in a nested case–control study. Methods: This study was embedded in the PRIDE Study (n = 3,019), from which we selected all cases with preterm birth (n = 64), low birth weight (n = 49), and small-for-gestational age (SGA; n = 65), and 260 randomly selected controls, among the participants who provided a single awakening saliva sample in approximately gestational week 19 in 2012–2016. Multivariable linear and logistic regression was performed to assess the associations between continuous and categorized cortisol levels and the selected outcomes. Results: We did not observe any associations between maternal cortisol levels and preterm birth and low birth weight. However, high cortisol levels (≥ 90th percentile) seemed to be associated with SGA (adjusted odds ratio 2.1, 95% confidence interval 0.9–4.8), in particular among girls (adjusted odds ratio 3.7, 95% confidence interval 1.1–11.9, based on eight exposed cases) in an exploratory analysis. Conclusion: The results of this study showed no suggestions of associations between maternal awakening cortisol levels in mid-pregnancy and adverse birth outcomes, except for an increased risk of SGA. [ABSTRACT FROM AUTHOR]

Background:Trying to simultaneously achieve developmental milestones and cope with a life-threatening disease may place adolescents and young adults (AYAs) at risk for impaired health-related quality of life (HRQoL) later in life. The aim of this study was to examine differences in HRQoL between AYA lymphoma survivors and a normative population and to determine sociodemographic, clinical and long-term symptom-related factors associated with HRQoL. Material and methods:This study was part of a longitudinal, population-based survey among lymphoma survivors diagnosed between 1999 and 2012. The AYA survivor sample (18–39 years at time diagnosis) was compared to a sex- and age-matched normative population on HRQoL (EORTC-QLQ-C30) and psychological distress (HADS). Multiple linear regression analyses were conducted to determine factors associated with HRQoL among survivors. Results:One hundred and ninety-eight AYA lymphoma survivors (58%) responded to the study invitation. Compared to an age- and sex-matched normative population (N = 380), significantly and clinically relevant poorer HRQoL was observed for AYA lymphoma survivors in seven specific domains of HRQoL: physical, role, cognitive, emotional, social functioning, fatigue and financial difficulties (all p < 0.05). In addition, AYA lymphoma survivors less often had a spouse/partner and more often had a lower educational level compared to the normative population. Linear regression analyses showed that being unemployed, female gender, having one or more comorbid conditions, high levels of fatigue and psychological distress were most strongly associated with HRQoL. Conclusions:These findings identify specific domains of life in which cancer has a significant and long-term impact for AYA lymphoma survivors. Future investigations are needed to identify and test administrations and timing of psychosocial support interventions having potential to reduce long-term late effects in specific HRQoL domains and promote function and adaptability after cancer treatment. [ABSTRACT FROM AUTHOR]

Background: Distress in patients with cancer influences their quality of life. Worldwide, screening on distress with the Distress Thermometer (DT) in patients with cancer is recommended. However, the effects of the use of the DT on the psychosocial wellbeing of the patient are unknown. A study to assess the psychosocial consequences of the systematic use of the DT and its discussion by a nurse as compared to the usual care provided to outpatients who are treated for primary breast cancer is needed.Methods/design: The effectiveness of a nurse-led intervention with the DT will be tested in a non-blinded randomized controlled trial. Patients treated with curative intent for breast cancer will be recruited from the Radboud University Medical Center. The intervention consists of the DT together with discussion of the results with the patient by a trained oncology nurse added to the usual care. Patients will be randomly allocated (1:1) to either receive usual care or the usual care plus the intervention. Primary outcome measure is global quality of life measured with the EORTC QLQ-C30. The functional and symptom scales of the EORTC QLQ-C30 and BR23, Hospital Anxiety and Depression Scale, Impact of Event Scale, Illness Cognition Questionnaire and DT (baseline and final measurement only) will be used to measure secondary outcomes. Questionnaires are obtained in both arms at baseline, after completion of each type of cancer treatment modality and during follow up, with a three and six months' interval during the first and second year respectively.Discussion: This study will be the first randomized controlled longitudinal study about the effectiveness of the DT as nurse led-intervention. In case of proven effectiveness, future implementation and standardization of use of the DT as part of routine care will be recommended.Trial Registration: This study is registered at clinicaltrial.gov march 17, 2010 ( NCT01091584 ). [ABSTRACT FROM AUTHOR]

Purpose: Resilience has become an important concept in health research, addressing mental health outcomes. The purpose of this study was to translate, adapt, and evaluate psychometric properties of the Slovenian version of the 14-item Resilience Scale (RS-14), using a sample of general population and cancer survivors. Methods: The original version of the RS-14 was first back-translated and pilot tested. The factor structure was assessed with an exploratory analysis and confirmed with a confirmatory analysis. To assess reliability, internal consistency (Cronbach's alpha) and test–retest (ICC, t student test) were determined. Measurement validity was assessed with demographic (age and gender) and psychological characteristics (symptoms of anxiety and depression and health-related quality of life). Results: An exploratory factor analysis revealed one-factor solution in both samples and the fit indexes showed an acceptable model fit. Internal consistency showed excellent values (0.91–0.96), and test–retest reliability was found to be acceptable (ICC = 0.89). Significant correlations were found between RS-14 and anxiety and depression HADS subscales in Sample 1 (r = − 0.62, − 0.72 for anxiety and depression) and Sample 2 (r = − 0.43, r = − 0.51 for anxiety and depression) and the majority of EQ-5D subscales (usual activities, pain, anxiety/depression). Conclusion: The study showed that the Slovenian version of the RS-14 test scores is valid and stable. Trial registration number: 0120–25/2019/6 [ABSTRACT FROM AUTHOR]

Objective: The Pictorial Representation of Self and Illness Measure (PRISM) measures in a simple, graphic way the burden of suffering due to illness. The question addressed in this study is whether the PRISM is a valid instrument to measure suffering in cancer survivors experiencing severe fatigue. Method: Quantitative and qualitative data of a previous randomized controlled trial demonstrating the efficacy of cognitive behavior therapy (CBT) especially designed for postcancer fatigue was used to assess convergent validity and sensitivity to change in a sample of 83 cancer survivors. Measures: The PRISM, yielding self-illness separation (SIS-fatigue = suffering due to fatigue; SIS-cancer = suffering due to cancer), fatigue severity (Checklist Individual Strength; CIS-fatigue), functional impairment, psychological well-being, quality of life, and coping with the experience of cancer (Impact of Event Scale; IES). Results: Moderate significant correlations were found with the PRISM and the above mentioned measures. On the basis of SIS scores, the sample was divided into two separate groups: cancer survivors who suffered more because of fatigue and cancer survivors who suffered more because they had cancer in the past. The two groups had different scores on CIS-fatigue and IES, in line with that aspect that caused them the most suffering. The qualitative data confirmed this finding. Participants in the CBT condition demonstrated a significant difference between SIS-fatigue at baseline versus 6 months later compared with those in the waiting list condition. No change of SIS-cancer was found. Conclusion: The PRISM seems to be a valuable tool in fatigue research and clinical practice. [ABSTRACT FROM AUTHOR]

Background: Violence in families affects children. Exposure to violence is seen as child abuse. Figures show that about one third of children exposed to violence become victim or perpetrator in their adult life: known as intergenerational transmission. Violence also affects sexual and reproductive health. To prevent problems in adult life, children need help and support. However, while trying to protect their parents, children often do not seek help, or perceive the threshold as too high. Since almost all children of the current generation have access to the internet, an online intervention will make help better available for this target group. In 2011, an internet-based selfsupport method for children, adolescents and young adults exposed to family violence was developed in the Netherlands: "Feel the ViBe". The intervention was developed in close collaboration with the target group. This article describes the protocol of the RCT to study the effectiveness of this intervention. Methods/design: This study is a randomized controlled trial using the method of minimization to randomize the participants in two parallel groups with a 1:1 allocation ratio, being an intervention group, having access to "Feel the ViBe" and usual care (UC), and a control group, having access to minimally enhanced usual care (mEUC) followed by access to the intervention after twelve weeks. Outcomes are measured with questionnaires on PTSD symptoms, mental health and sexual and reproductive health. Routine Outcome Measurement (ROM) will be used to measure a direct effect of participating in the intervention. Data from a web evaluation questionnaire (WEQ), user statistics and qualitative analysis of online data will be used to support the findings. To compare results Cohen's d effect sizes will be used. Discussion: A RCT and process evaluation will test effectiveness and provide information of how the effects can be explained, how the intervention meets the expectation of participants and which possible barriers and facilitators for implementation exist. A qualitative analysis of the data will add information to interpret the quantitative data. This makes "Feel the ViBe" unique in its field. [ABSTRACT FROM AUTHOR]

Purpose: The aim of this study was to compare conventional medical follow-up with follow-up containing additional nursing consultations regarding the psychosocial adjustment and health-related quality of life (HRQOL) of head and neck cancer patients. Methods: Using a quasi-experimental design, patients were enrolled consecutively into two groups. Experimental care covered six 30-min bimonthly nursing follow-up consultations during the first year posttreatment. Data were collected at posttreatment months 1 (baseline), 6, and 12 for both groups. Results: The intervention group was significantly worse at baseline, based on two of the seven adjustment scales and on the majority of HRQOL scales. However, their outcome at 6 and 12 months was consistent with that of the group which received conventional follow-up. Thus, the intervention group had a larger improvement in scores, and this was significant for one of the seven adjustment scales and 19 of the 33 HRQOL scales at 6 and 12 months, respectively. Most of the differences in HRQOL scales were clinically relevant at 6 months. Conclusion: These results suggest that nurse-led consultations for patients with head and neck cancer have a positive effect, primarily with respect to HRQOL. Nurse-led follow-up leads to a similar psychosocial adjustment as conventional follow-up, even among patients who showed worse performance at the start of follow-up. Thus, nurse-led follow-up may be a cost-effective way to improve follow-up care for this patient group. [ABSTRACT FROM AUTHOR]

Objective: Non‐adherence to adjuvant endocrine therapy (AET) for breast cancer leads to increased recurrence and mortality risk and healthcare costs. Evidence on feasible, effective AET adherence interventions is scarce. This paper describes the systematic adaptation of the cost‐effective adherence improving self‐management strategy (AIMS) for patients with HIV to AET for women after breast cancer treatment. Methods: We followed the intervention mapping protocol for adapting interventions by conducting a needs assessment, reviewing target behaviours and determinants, reassessing behaviour change methods and adapting programme content. Therefore, we performed a literature review, consulted behavioural theory and organised nine advisory board meetings with patients and healthcare professionals. Results: Non‐adherence occurs frequently among AET users. Compared to HIV treatment, AET is less effective, and AET side effects are more burdensome. This drives AET treatment discontinuation. However, the key determinants of non‐adherence are largely similar to HIV treatment (e.g. motivation, self‐regulation and patient–provider relationship); therefore, most strategies in AIMS‐HIV also seem suitable for AIMS‐AET. Modifications were required, however, regarding supporting patients with coping with side effects and sustaining treatment motivation. Conclusion: AIMS seems to be a suitable framework for adherence self‐management across conditions and treatments. Intervention mapping offered a transparent, systematic approach to adapting AIMS‐HIV to AET. [ABSTRACT FROM AUTHOR]

Objective: To perform a systematic review of articles published in the last 25 years on prevalence and course of distress and quality of life surrounding the diagnostic process of suspected cancer, and the influence of rapid diagnostic programs. Methods: Twenty-three articles were identified via Pubmed, PsycINFO, and reference lists of articles. Except for three randomized clinical trials and one case control study all studies were uncontrolled cohort studies. Results: Most studies involved patients with suspected breast cancer and therefore had a sex selection bias. Four studies on the effect of rapid outpatient diagnostic programs were found. Studies showed very high prevalence of anxiety, decreasing in case of a benign diagnosis but increasing or sustaining in patients waiting for results or after cancer diagnosis though not significantly more in rapid programs. Quality of life was low and showed varying patterns. Conclusions: Distress in the diagnostic phase of cancer is a major problem and the rapid decrease of anxiety in patients eventually not diagnosed with cancer suggests a benefit of rapid diagnostic programs. The available evidence however is limited and shows some inconsistencies. Studies differ in subjects, objective and are limited by quality and quantity. Conflicting results prohibit a conclusion on patients ultimately diagnosed with cancer. Copyright © 2011 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Background: Patients with mild cognitive impairment (MCI) have to deal with an uncertain prognosis and also face a multitude of memory-related problems and psychosocial consequences. A newly developed group programme proved to be feasible, however, it needed confirmation by a controlled study. Aim: This controlled study evaluates this group therapy for MCI patients aimed to help them accept and manage the memory problems and the psychosocial consequences. The programme combines elements from psychoeducation, cognitive rehabilitation and cognitive-behavioural therapy. Patients and Methods: Ninety-three MCI patients received treatment, with 30 patients being first assigned to a waiting list, thus serving as their own control group. Pre- and post-treatment acceptance and helplessness were assessed using subscales of the Illness Cognition Questionnaire, while distress and general well-being were gauged with the Geriatric Depression Scale and subscales of the RAND-36. Results: Linear mixed model analyses showed that, relative to the controls, acceptance had increased more in the intervention group compared to the waiting-list period (p = 0.034). Distress and general well-being showed no changes. Treatment responders demonstrating a clinically significant effect on acceptance and two of three secondary outcome measures had higher baseline levels of helplessness and fewer self-reported memory complaints in daily life than patients who did not improve. Conclusion: The intervention helped the patients deal better with their uncertain future in that they were overall better able to accept their condition, with especially the female patients showing a decrease in helplessness cognitions, although the effects were relatively small. Copyright © 2010 S. Karger AG, Basel [ABSTRACT FROM AUTHOR]

Abstract: Objective: Chronic fatigue syndrome (CFS) is considered to be one of the functional somatic syndromes (FSS). Cognitions and behavior are thought to perpetuate the symptoms of CFS. Behavioral interventions based on the existing models of perpetuating factors are quite successful in reducing fatigue and disabilities. The evidence is reviewed that cognitive processes, particularly those that determine the perception of fatigue and its effect on behavior, play a central role in the maintenance of symptoms. Method: Narrative review. Results: Findings from treatment studies suggest that cognitive factors mediate the positive effect of behavioral interventions on fatigue. Increased fitness or increased physical activity does not seem to mediate the treatment response. Additional evidence for the role of cognitive processes is found in studies comparing the subjective beliefs patients have of their functioning with their actual performance and in neurobiological research. Conclusion: Three different cognitive processes may play a role in the perpetuation of CFS symptoms. The first is a general cognitive representation in which fatigue is perceived as something negative and aversive and CFS is seen as an illness that is difficult to influence. The second process involved is the focusing on fatigue. The third element is formed by specific dysfunctional beliefs about activity and fatigue. [Copyright &y& Elsevier]

Summary During the past two decades, there has been heated debate about chronic fatigue syndrome (CFS) among researchers, practitioners, and patients. Few illnesses have been discussed so extensively. The existence of the disorder has been questioned, its underlying pathophysiology debated, and an effective treatment opposed; patients' organisations have participated in scientific discussions. In this review, we look back on several controversies over CFS with respect to its definition, diagnosis, pathophysiology, and treatment. We review issues of epidemiology and clinical manifestations, focusing on the scientific status of CFS. Modern neuroscience and genetics research offer interesting findings for new hypotheses on the aetiology and pathogenesis of the illness. We also discuss promising future issues, such as psychopathophysiology and mechanisms of improvement, and suggest multidisciplinary prospective studies of CFS and fatigue in the general population. These studies should pay particular attention to similarities to and differences from functional somatic syndromes and other fatiguing conditions. [ABSTRACT FROM AUTHOR]

Several randomized controlled trials have indicated that cognitive behaviour therapy is an effective treatment (or chronic fatigue syndrome. In 1 of these studies 13 therapists applied cognitive behaviour therapy for chronic fatigue syndrome in 83 chronic fatigue syndrome patients. In the present study therapists' adherence and perceptions of the manual are studied. Following completion ot the study the therapists were asked to complete a questionnaire. Audiotaped sessions were conducted to verily the therapists' adherence. Analyses of the audiotapes showed that in 87% of the sessions this appeared to be the case. The questionnaire revealed that the therapists found it more difficult to treat patients with chronic fatigue syndrome than to treat patients with psychological or other physical problems. Treatment aspect posing the most problems were integrating individual problems into the standardized treatment dealing with the patients lack of confidence in the treatment and handling insufficient motivation. [ABSTRACT FROM AUTHOR]

Objective: Fatigue is investigated in 57 severely fatigued disease-free breast cancer patients and in 57 gender- and age-matched patients with chronic fatigue syndrome (CFS) using multidimensional and multimethod assessment. A comparison between these groups of patients is important to determine whether a cognitive behavioural intervention to reduce fatigue in CFS patients would be appropriate as well for severely fatigued disease-free breast cancer patients.Methods: Measurement included computerised questionnaires and a standardised neuropsychological test. Furthermore, patients filled out a daily Self-Observation List (SOL) and wore an actometer during a period of 12 days.Results: In comparison to severely fatigued disease-free breast cancer patients, CFS patients score more problematic with regard to the level of fatigue, functional impairment, physical activity, pain and self-efficacy. However, a subgroup of severely fatigued disease-free breast cancer patients reports the same amount of problems as CFS patients with regard to psychological well-being, sleep and concentration. Finally, CFS patients and severely fatigued breast cancer patients score equal on measures of social support.Conclusion: There seem to be some similarities but also many differences between severely fatigued breast cancer survivors and females with CFS. Therefore, cognitive behaviour therapy (CBT) to reduce fatigue after treatment for cancer should also differ in certain aspects from cognitive behaviour therapy as it has been developed for patients with CFS. [ABSTRACT FROM AUTHOR]

Summary:Background: Cognitive behaviour therapy (CBT) seems a promising treatment for chronic fatigue syndrome (CFS), but the applicability of this treatment outside specialised settings has been questioned. We compared CBT with guided support groups and the natural course in a randomised trial at three centres.Methods: Of 476 patients diagnosed with CFS, 278 were eligible and willing to take part. 93 were randomly assigned CBT (administered by 13 therapists recently trained in this technique for CFS), 94 were assigned the support-group approach, and 91 the control natural course. Multidimensional assessments were done at baseline, 8 months, and 14 months. The primary outcome variables were fatigue severity (on the checklist individual strength) and functional impairment (on the sickness impact profile) at 8 and 14 months. Data were analysed by intention to treat.Findings: 241 patients had complete data (83 CBT, 80 support groups, 78 natural course) at 8 months. At 14 months CBT was significantly more effective than both control conditions for fatigue severity (CBT vs support groups 5.8 [2.2-9.4]; CBT vs natural course 5.6 [2.1-9.0]) and for functional impairment (CBT vs support groups 263 [38-488]; CBT vs natural course 222 [3-441]). Support groups were not more effective for CFS patients than the natural course. Among the CBT group, clinically significant improvement was seen in fatigue severity for 20 of 58 (35%), in Karnofsky performance status for 28 of 57 (49%), and self-rated improvement for 29 of 58 (50%). Prognostic factors for outcome after CBT were a higher sense of control predicting more improvement, and a passive activity pattern and focusing on bodily symptoms predicting less improvement.Interpretation: CBT was more effective than guided support groups and the natural course in a multicentre trial with many therapists. Our study showed a lower proportion of patients with improvement than CBT trials with a few highly skilled therapists. [ABSTRACT FROM AUTHOR]

Background: Chronic Fatigue Syndrome (CFS) is characterized by severe debilitating fatigue for at least six months. The lack of a known origin could have consequences for the way general practitioners deal with the diagnosis CFS and their perception of CFS patients. The aims of the study were to investigate the use of the diagnosis CFS by GPs and their reactions to self-diagnosis and to explore opinions of GPs about causes of CFS and the communication with CFS patients as well as opinions of CFS patients about their GPs. Method: One hundred twenty-one GPs completed questionnaires and 12 were interviewed. Data of 211 CFS patients were analyzed as well. Results: Only half of the GPs used the diagnosis CFS. The main reason for not diagnosing CFS was ignorance of the criteria. GPs reported self-diagnosis in 68% of the CFS patients. More than half of the GPs could sympathize less with the complaints of CFS patients compared with other patients. These GPs experienced more problems in communicating with CFS patients and judged co-operation and contact as poor. As to the causes for CFS a discrepancy was found. GPs mainly attributed the complaints to psychosocial factors, whereas patients mainly had physical attributions. Conclusion: In CFS, GPs should be explicit about the diagnosis. As to the discrepancy in presumed causes of CFS between GPs and CFS patients, it may be helpful for GPs to discuss the distinction between initiating and perpetuating factors of CFS. We argue that this attitude of GPs would be beneficial to the course of the complaints of CFS patients. [ABSTRACT FROM PUBLISHER]

Background: Patients with chronic fatigue syndrome (CFS) often have concentration and memory problems. Neuropsychological test performance is impaired in at least a subgroup of patients with CFS. Cognitive behavioural therapy (CBT) for CFS leads to a reduction in fatigue and disabilities. Aim: To test the hypothesis that CBT results in a reduction of self-reported cognitive impairment and in an improved neuropsychological test performance. Methods: Data of two previous randomised controlled trials were used. One study compared CBT for adult patients with CFS, with two control conditions. The second study compared CBT for adolescent patients with a waiting list condition. Self-reported cognitive impairment was assessed with questionnaires. Information speed was measured with simple and choice reaction time tasks. Adults also completed the symbol digit-modalities task, a measure of complex attentional function. Results: In both studies, the level of self-reported cognitive impairment decreased significantly more after CBT than in the control conditions. Neuropsychological test performance did not improve. Conclusions: CBT leads to a reduction in self-reported cognitive impairment, but not to improved neuropsychological test performance. The findings of this study support the idea that the distorted perception of cognitive processes is more central to CFS than actual cognitive performance. [ABSTRACT FROM AUTHOR]

A letter to the editor is presented in response to the article "70-Gene signature as an aid to treatment decisions in early-stage breast cancer," by F. Cardoso and colleagues in the August 25, 2016 issue.

Cancer survivors may experience unmet needs beyond the end of their treatment. This paper aimed to explore the prevalence and most frequently found unmet needs and to identify factors associated with higher levels of total unmet needs and with each domain separately. Five databases were searched using the keywords neoplasms, survivors, needs assessment, health services' needs and demands. The results were presented based on the strength of the evidence (strong, moderate and weak association) and the categorisation of the pooled prevalence of at least one unmet need (high, moderate, low). Twenty‐six studies were included in the review. A higher prevalence of at least one reported unmet need was observed in survivors with less time since treatment and in women with breast cancer. The most frequently reported unmet needs were fear of cancer recurrence and requesting up to date information. Strong evidence was found for an association between a higher number of unmet needs and younger age, higher anxiety and poorer quality of life. Future studies on unmet needs should report how unmet needs are associated with each domain separately. This might solve the inconclusive evidence found for the stage of the disease at diagnosis and depression. [ABSTRACT FROM AUTHOR]

Objective: Few evidence‐based interventions addressing high levels of fear of cancer recurrence (FCR) have been implemented. Understanding how these might be implemented is crucial to bridge the research‐practice gap. This study investigated the feasibility of implementing the blended Survivors' Worries of Recurrent Disease (SWORD) intervention in real‐world psycho‐oncology practice. Methods: SWORD was offered for 15 months (2021–2022) as the standard care for clinical FCR in a university hospital, a general hospital, and psycho‐oncological center. We evaluated using a mixed‐methods design six feasibility outcomes based on Bowen's framework: demand, limited effectiveness, degree of execution, acceptability, practicality, and integration. Anonymous data were collected for all oncology patients on referral. Study participants completed questionnaires before and after treatment, including the Cancer Worry Scale (CWS‐6) as the primary measure of effectiveness. Qualitative data included interviews with patients and psychologists, and field notes. Results: Regarding demand, 81 of 644 patients referred (13%) were eligible for SWORD. The uptake of SWORD was 79% (n = 63/80) and the completion rate 73% (n = 46/63). SWORD was effective in reducing FCR (p < 0.001, ηp2 = 0.694). Regarding execution, a variability in the length, planning and number of treatment sessions was found between different settings. Adherence to the treatment manual's content was high (89%). Regarding acceptability, most patients were satisfied with SWORD (average 8.2/10) and psychologists valued the blended format. Psychologists reported SWORD was practical to deliver given their knowledge and skills. Although differences between settings were found, SWORD integrated well into practice. Referral for FCR and a reluctance to contract new eHealth providers were barriers for implementation. Conclusions: Despite differences between healthcare settings, the implementation of SWORD was evaluated well. The feasibility of SWORD in different settings should inform a national implementation strategy. [ABSTRACT FROM AUTHOR]

Objective: Colorectal cancer survivors (CRCS) often experience high levels of distress. The objective of this randomized controlled trial was to evaluate the effect of blended cognitive behavior therapy (bCBT) on distress severity among distressed CRCS. Methods: CRCS (targeted N = 160) with high distress (Distress Thermometer ≥5) between 6 months and 5 years post cancer treatment were randomly allocated (1:1 ratio) to receive bCBT, (14 weeks including five face‐to‐face, and three telephone sessions and access to interactive website), or care as usual (CAU). Participants completed questionnaires at baseline (T0), four (T1) and 7 months later (T2). Intervention participants completed bCBT between T0 and T1. The primary outcome analyzed in the intention‐to‐treat population was distress severity (Brief Symptom Inventory; BSI‐18) immediately post‐intervention (T1). Results: 84 participants were randomized to bCBT (n = 41) or CAU (n = 43). In intention‐to‐treat analysis, the intervention significantly reduced distress immediately post‐intervention (−3.86 points, 95% CI −7.00 to −0.73) and at 7 months post‐randomization (−3.88 points, 95% CI −6.95 to −0.80) for intervention compared to CAU. Among secondary outcomes, at both time points, depression symptoms, anxiety symptoms, cancer worry, and cancer‐specific distress were significantly lower in the intervention arm. Self‐efficacy scores were significantly higher. Overall treatment satisfaction was high (7.4/10, N = 36) and 94% of participants would recommend the intervention to other colorectal cancer patients. Conclusions: The blended COloRectal canceR distrEss reduCTion intervention seems an efficacious psychological intervention to reduce distress severity in distressed CRCS. Yet uncertainty remains about effectiveness because fewer participants than targeted were included in this trial. Trial Registration: Netherlands Trial Register NTR6025. [ABSTRACT FROM AUTHOR]

Survivors of childhood and adult-onset cancer are at lifelong risk for the development of late effects of treatment that can lead to serious morbidity and premature mortality. Regular long-term follow-up aiming for prevention, early detection and intervention of late effects can preserve or improve health. The heterogeneous and often serious character of late effects emphasizes the need for specialized cancer survivorship care clinics. Multidisciplinary cancer survivorship care requires a coordinated and well integrated health care environment for risk based screening and intervention. In addition survivors engagement and adherence to the recommendations are also important elements. We developed an innovative model for integrated care for cancer survivors, the "Personalized Cancer Survivorship Care Model", that is being used in our clinic. This model comprises 1. Personalized follow-up care according to the principles of Person Centered Care, aiming to empower survivors and to support self management, and 2. Organization according to a multidisciplinary and risk based approach. The concept of person centered care is based on three components: initiating, integrating and safeguarding the partnership with the patient. This model has been developed as a universal model of care that will work for all cancer survivors in different health care systems. It could be used for studies to improve self efficacy and the cost-effectiveness of cancer survivorship care. [ABSTRACT FROM AUTHOR]

Purpose: Breast cancer is associated with high levels of psychological distress. Mindfulness-based stress reduction (MBSR) has proven to be effective in reducing distress in cancer patients. In several studies, patients who are currently undergoing somatic anticancer treatment are excluded from participating in MBSR. Little is known about what would be the most suitable stage of disease to offer MBSR. We examined whether stage of disease facilitated and/or hindered participation in MBSR for breast cancer patients.Method: A mixed method design was used. Self-report questionnaires on psychological distress (HADS) and quality of life (EORTC QLQ-C30) were administered before and after MBSR. Five focus groups and three semi-structured individual interviews were conducted. Qualitative data were analyzed with the constant comparative method in order to develop a grounded theory.Results: Sixty-four females participated in MBSR. In 52 patients who completed the questionnaires, psychological distress improved significantly. Qualitative data showed that participating in MBSR both during and after anticancer treatment has specific advantages and disadvantages. Interestingly, being emotionally ready to take part in MBSR seems equally important as physical ability. Informing patients at an early stage seemed to strengthen autonomy and self-management skills.Conclusions: In contrast to the common practice to tailoring the timing of MBSR to physical impairments or demands of the anticancer treatment, our findings revealed that emotional readiness is equally important to take into account. These findings might support professionals in their choices whether and when to inform and refer patients to MBSR. [ABSTRACT FROM AUTHOR]

Purpose: The current study determined the prevalence of severe fatigue in adolescent and young adult (AYA) cancer patients (aged 18-35 years at diagnosis) consulting a multidisciplinary AYA team in comparison with gender- and age-matched population-based controls. In addition, impact of severe fatigue on quality of life and correlates of fatigue severity were examined.Methods: AYAs with cancer (n = 83) completed questionnaires including the Checklist Individual Strength (CIS-fatigue), Quality of Life (QoL)-Cancer Survivor, Hospital Anxiety and Depression Scale (reflecting psychological distress), and the Cancer Worry Scale (reflecting fear of cancer recurrence or progression).Results: The vast majority of participants had been treated with chemotherapy (87%) and had no active treatment at the time of participation (73.5%). Prevalence of severe fatigue (CIS-fatigue score ≥35) in AYAs with cancer (48%, n = 40/83) was significantly higher in comparison with matched population-based controls (20%, n = 49/249; p < .001). Severely fatigued AYAs with cancer reported lower QoL compared to non-severely fatigued AYAs with cancer (p < .05). Female gender, being unemployed, higher disease stage (III-IV) at diagnosis, receiving active treatment at the time of study participation, being treated with palliative intent, having had radiotherapy, higher fear of recurrence or progression, and higher psychological distress were significantly correlated with fatigue severity (p < .05).Conclusions: Severe fatigue based on a validated cut-off score was highly prevalent in this group of AYAs with cancer. QoL is significantly affected by severe fatigue, stressing the importance of detection and management of this symptom in those patients affected by a life-changing diagnosis of cancer in late adolescence or young adulthood. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Objectives: Fear of cancer recurrence (FCR) is common and burdensome to patients, but often remains undetected. Oncology professionals report need for tools to improve FCR detection in routine care. Oncology care guidelines recommend the Distress Thermometer (DT) for distress screening, but it has not been validated for FCR. This study evaluated the capacity of the DT and accompanying problem list to detect FCR. Methods: Amalgamated data of two studies with 149 breast cancer and 74 colorectal cancer survivors were used. We evaluated the Dutch DT including the DT score, problem list fears item and emotional domain score using Receiver Operating Characteristic analyses. The Dutch Cancer Worry Scale‐6 (CWS‐6) was used as reference measure, with validated cut‐off scores ≥10 and ≥12 for high FCR. Sensitivity, specificity, negative and positive predictive values were calculated. Results: The DT score showed poor performance in discriminating between low and high FCR. The recommended cut‐off ≥4 had low sensitivity (65% for CWS‐6≥10; 72% for CWS‐6 ≥12) and specificity (67% and 58%). No other cut‐off had an acceptable combination of sensitivity and specificity. The fears item had low sensitivity (29% and 44.9%) and high specificity (95% and 94%). The emotional domain score had fair performance in discriminating between low and high FCR but there was no cut‐off with acceptable sensitivity and specificity. Conclusion: The DT as currently recommended in oncology care guidelines is not suitable to effectively detect FCR in routine care. To improve patients access to psychosocial care, it should be investigated how FCR‐specific measures can be integrated in oncology practice. [ABSTRACT FROM AUTHOR]

Background: Violence in families affects children. Exposure to violence is seen as child abuse. Figures show that about one third of children exposed to violence become victim or perpetrator in their adult life: known as intergenerational transmission. Violence also affects sexual and reproductive health. To prevent problems in adult life, children need help and support. However, while trying to protect their parents, children often do not seek help, or perceive the threshold as too high. Since almost all children of the current generation have access to the internet, an online intervention will make help better available for this target group. In 2011, an internet-based self-support method for children, adolescents and young adults exposed to family violence was developed in the Netherlands: "Feel the ViBe". The intervention was developed in close collaboration with the target group. This article describes the protocol of the RCT to study the effectiveness of this intervention.Methods/design: This study is a randomized controlled trial using the method of minimization to randomize the participants in two parallel groups with a 1:1 allocation ratio, being an intervention group, having access to "Feel the ViBe" and usual care (UC), and a control group, having access to minimally enhanced usual care (mEUC) followed by access to the intervention after twelve weeks. Outcomes are measured with questionnaires on PTSD symptoms, mental health and sexual and reproductive health. Routine Outcome Measurement (ROM) will be used to measure a direct effect of participating in the intervention. Data from a web evaluation questionnaire (WEQ), user statistics and qualitative analysis of online data will be used to support the findings. To compare results Cohen's d effect sizes will be used.Discussion: A RCT and process evaluation will test effectiveness and provide information of how the effects can be explained, how the intervention meets the expectation of participants and which possible barriers and facilitators for implementation exist. A qualitative analysis of the data will add information to interpret the quantitative data. This makes "Feel the ViBe" unique in its field.Trial Registration: The Netherlands National Trial Register (NTR), trial ID NTR3692. [ABSTRACT FROM AUTHOR]

Objective: Adolescents and young adults (AYA) exposed to family violence are in need of professional healthcare. However, only one-third of them seek professional help.Methods: This study investigates healthcare needs of twelve AYA exposed to family violence. Semi-structured face-to-face interviews using purposive sampling to reach diversity. Open thematic coding was used to identify the most important themes.Results: Participants experienced emotional problems, distrusted others and felt unsafe as an important consequence of their exposure to family violence. All participants expressed a need for help, but as help involved informing others, they considered it unsafe. Trust, safety and control regarding healthcare interventions emerged as vital needs. The anonymity of the Internet was considered as offering safeguards in seeking and receiving help.Conclusion: Trust, safety and control regarding healthcare interventions emerged as vital needs for AYA exposed to family violence. The great importance of being in control of healthcare interventions has not been reported earlier. A personal bond can lower the need for control.Practice Implications: To comply with the three basic needs, healthcare providers should grant AYA as much control as possible while still monitoring patient safety. The Internet can be an important resource for offering low-threshold professional and peer support. [ABSTRACT FROM AUTHOR]

Background: Lung cancer patients and their partners report high rates of distress. Although distress is of importance, psychiatric disorders might be more important in terms of prognostic value and additional psychological treatment. This study examined the suitability of the Hospital Anxiety and Depression Scale (HADS), Distress Thermometer (DT), Beck Depression Inventory (BDI-II) and State subscale of State Trait Anxiety Inventory (STAI-S) to screen for psychiatric disorders in lung cancer patients and partners.Methods: A consecutive sample of lung cancer patients and partners completed the screening instruments. The Structured Clinical Interview DSM-IV (SCID-I) was used to diagnose psychiatric axis I disorders.Results: In 144 patients, overall ability of HADS total score (HADS-T) screening for patients with psychiatric disorders was good, whereas DT appeared less suitable. In 98 partners, the performance of HADS-T was good. Although no instrument was successful in identifying psychiatric disorders, HADS-T came closest with a fair performance in patients and partners.Limitations: Several patients and partners declined participation because they perceived participation as too distressing. As decliners possibly have the highest rates of disorders, our findings might underestimate the prevalence of psychiatric disorders. A low prevalence negatively affects the positive predictive value and complicates efficient screening for psychiatric disorders.Conclusion: The HADS-T appears to be a suitable screening instrument for ruling out those lung cancer patients and partners without a psychiatric disorder. Regarding identifying those with a psychiatric disorder, HADS-T should be used to refer both patients and partners for further diagnostics and treatment to a psychiatrist/psychologist. [ABSTRACT FROM AUTHOR]

Approximately one in three women worldwide experiences intimate partner violence and abuse (IPVA) in her lifetime. Despite its frequent occurrence and severe consequences, women often refrain from seeking help. eHealth has the potential to remove some of the barriers women face in help seeking and disclosing. To guarantee the client-centeredness of an (online) intervention it is important to involve the target group and people with expertise in the development process. Therefore, we conducted an interview study with survivors and professionals, in order to assess needs, obstacles, and wishes with regard to an eHealth intervention for women experiencing IPVA. Semi-structured interviews were conducted with 16 women (8 survivors and 8 professionals) between 22 and 52 years old, with varied experiences of IPVA and help. Qualitative data was analyzed using a grounded theory approach and open thematic coding. During analysis we identified a third stakeholder group within the study population: survivor-professionals, with both personal experiences of and professional knowledge on IPVA. All stakeholder groups largely agree on the priorities for an eHealth intervention: safety, acknowledgment, contact with fellow survivors, and help. Nevertheless, the groups offer different perspectives, with the survivor-professionals functioning as a bridge group between the survivors and professionals. The groups prioritize different topics. For example, survivors and survivor-professionals highlighted the essential need for safety, while professionals underlined the importance of acknowledgment. Survivor-professionals were the only ones to emphasize the importance of addressing various life domains. The experiences of professionals and survivors highlight a broad range of needs and potential obstacles for eHealth interventions. Consideration of these findings could improve the client-centeredness of existing and future (online) interventions for women experiencing IPVA. [ABSTRACT FROM AUTHOR]

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. (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 of disease on loved ones and changes in social life to be prominent psychosocial themes. Of 82 quantitative studies included in the review, 76% examined quality of life, 46% fear of disease progression or death, 26% distress or depression, and 4% hope, while few studies reported on adaptation or cognitive aspects. No quantitative studies focused on uncertainty, loss, or social impact; (4) Conclusion and clinical implications: Prominent psychosocial themes reported in qualitative studies were not included in quantitative research using specific validated questionnaires. More robust studies using quantitative research designs should be conducted to further understand these psychological constructs. Furthermore, the diversity of terminology found in the literature calls for a uniform definition to better address this specific patient group in research and in practice. [ABSTRACT FROM AUTHOR]

Objective: Knowledge of factors associated with fear of cancer recurrence (FCR) may inform intervention development and improve patient care. The aims were (1) to compare FCR severity between cancer types and (2) to identify associations between FCR, demographics, medical characteristics, information provision and health-related quality of life.Methods: Cross-sectional data were obtained from the Patient Reported Outcomes Following Initial Treatment and Long-Term Evaluation of Survivorship registry. We included stage I and II survivors diagnosed with melanoma (n = 469), colorectal cancer (n = 861), endometrial cancer (n = 688), thyroid cancer (n = 218), Hodgkin (n = 103) and non-Hodgkin lymphoma (n = 276). Cancer survivors completed questionnaires on FCR (Impact of Cancer scale - Health Worries subscale), satisfaction with information provision (European Organization for Research and Treatment of Cancer, Quality of Life Questionnaire (EORTC-QLQ) INFO25, satisfaction scale) and health-related quality of life (EORTC-QLQ C30, Short Form 36-item).Results: A total of 2615 survivors completed the Impact of Cancer scale - Health Worries subscale. No significant differences in FCR severity were found between any of the cancer types (p = 0.063). A younger age, female gender, stage II disease, a shorter time since diagnosis, scheduled follow-up appointments and comorbidity were associated with higher FCR (p < 0.01). Satisfaction with information provision was negatively correlated with FCR severity (r = -0.16, p < 0.05). Demographic and medical factors accounted for 6% of explained variance in FCR. The full model, also including health-related quality of life, explained 15% and 19%, respectively.Conclusion: Fear of cancer recurrence seems to be a universal concern of cancer survivors rather than a cancer type-specific problem. Gender, age and medical factors were identified as risk factors. Copyright © 2015 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Purpose: Peer support groups for cancer patients show mixed findings regarding effectiveness on psychological wellbeing. When embedded in a psychosocial intervention, such as mindfulness-based stress reduction (MBSR), peer support might be of more benefit to participants. This study is a qualitative exploration of how women with breast cancer experience the possible benefits and impediments of participating with fellow patients in an MBSR training.Methods: Five focus groups (n = 37) and three individual interviews (n = 3) were conducted with breast cancer patients who participated in MBSR. The qualitative data were analysed with the constant comparative method in order to develop a grounded theory.Results: We could identify a process where at the start of MBSR, patients experienced anticipatory fear for facing the suffering of fellow patients, especially for those who could not be cured anymore. In most women, this fear gradually subsided during the first two sessions. The atmosphere in the MBSR training was experienced as safe and supportive, providing a context where participants could connect with and trust one another. In turn, this facilitated participants to learn from one another.Conclusions: Our findings do not only show that the peer group facilitates the learning process in MBSR, but the MBSR also seemed to provide an atmosphere that promotes the experienced social support in participants. In addition, the results emphasize the importance for mindfulness teachers to acknowledge and explore the fear for facing fellow patients in the group. Future research should examine whether the results are generalizable to patients with other cancer types. [ABSTRACT FROM AUTHOR]

Purpose: Although long-term colorectal cancer (CRC) survivors generally report a good quality of life, fear of cancer recurrence (FCR) remains an important issue. This study investigated whether the Cancer Worry Scale (CWS) can detect high FCR, the prevalence, and characteristics of FCR in CRC survivors.Methods: Two hundred and eleven patients who had undergone successful CRC surgery in the period 2003-2010 in the Radboud University Medical Center in the Netherlands were asked to participate. All patients were sent an information letter plus questionnaires for collecting information on demographic and medical variables, FCR, distress, and quality of life.Results: Seventy-six patients (36 %; median age of 67.7 years range 41-88 years) completed the questionnaires a median of 5.1 years after surgery. A cut-off score of 14 or higher on the CWS was optimal to detect high FCR. Twenty-nine patients (38 %) experienced high levels of FCR, characterized by higher levels of distress, post-traumatic stress symptoms, and lower quality of life. These individuals particularly reacted to disease-related triggers, felt helpless, were worried, and experienced limitations in daily functioning. High FCR was not associated with demographic or medical variables.Conclusion: Long after successful CRC surgery, FCR is a serious problem that impairs the quality of life for a substantial proportion of patients. With the CWS, it is possible to detect high FCR and thereby assist survivors in receiving appropriate care. [ABSTRACT FROM AUTHOR]

Germline mutations in BRCA1 and BRCA2 genes were discovered twenty years ago. Female BRCA mutation carriers have an increased risk of breast and ovarian cancer at a relatively young age. Several choices have to be made with respect to cancer risk management, and consequences of these choices may affect quality of life. A review of the literature was performed to evaluate quality of life in unaffected BRCA mutation carriers and the influence of these medical choices. Overall, general quality of life appears not to be permanently affected in BRCA mutation carriers or by their choices. Risk-reducing salpingo-oophorectomy and its subsequent premature menopause affect (menopause specific) quality of life most. Hormone replacement therapy does not fully alleviate climacteric symptoms and therefore, there is a strong need for alternative strategies to reduce ovarian cancer risk and/or for improvements in postoperative care. Future research should focus on these needs. [ABSTRACT FROM AUTHOR]

Background. Gastrointestinal stromal tumors (GIST) are rare and before 2000, patients had a dismal prognosis with a median survival of less than a year after tumor metastasis. However, the median overall survival has increased to more than five years following the introduction of imatinib and other tyrosine kinase inhibitors (TKI). Little is known about the psychosocial consequences of treatment of GIST, but this is important because patients now are treated and live for longer. This cross-sectional study assessed quality of life, distress, and fear of cancer recurrence or progression in patients with GIST. Material and methods. Eighty-six patients with localized or metastatic GIST were asked to participate. Patients completed self-report questionnaires including the EORTC-Quality of Life Questionnaire, Hospital Anxiety and Depression Scale, Impact of Event Scale, Cancer Worry Scale, and Fear of Cancer Recurrence Inventory. Results. Fifty-four patients (median age 63.3 years) completed the questionnaires, 33 (61%) of whom were receiving TKI treatment at the time of the study. Overall, the GIST patients had a good global quality of life, but 28 patients had high levels of fear of cancer recurrence/progression. This high level of fear was not related to patient- or treatment-related variables. These patients experienced significantly higher levels of psychological distress, functional impairments, and difficulty making plans for the future than did patients with lower levels of fear. Conclusions. More attention should be paid to specific cancer-related problems, such as fear of cancer recurrence/progression, in addition to general quality of life issues in patients with GIST. [ABSTRACT FROM AUTHOR]

Background: To investigate associations between psychological problems and the use of healthcare and informal care and total costs among head and neck cancer (HNC) patients. Method: Data were used of the NETherlands QUality of Life and Biomedical Cohort study. Anxiety and depression disorder (diagnostic interview), distress, symptoms of anxiety and depression (HADS), and fear of cancer recurrence (FCR) and cancer worry scale (CWS) were measured at baseline and at 12-month follow-up. Care use and costs (questionnaire) were measured at baseline, 3-, 6-, 12-, and 24-month follow-up. Associations between psychological problems and care use/costs were investigated using logistic and multiple regression analyses. Results: Data of 558 patients were used. Distress, symptoms of anxiety or depression, FCR, and/or anxiety disorder at baseline were significantly associated with higher use of primary care, supportive care, and/or informal care (odds ratios (ORs) between 1.55 and 4.76). Symptoms of anxiety, FCR, and/or depression disorder at 12-month follow-up were significantly associated with use of primary care, supportive care, and/or informal care (ORs between 1.74 and 6.42). Distress, symptoms of anxiety, and FCR at baseline were associated with higher total costs. Discussion: HNC patients with psychological problems make more use of healthcare and informal care and have higher costs. This is not the result of worse clinical outcomes. [ABSTRACT FROM AUTHOR]

Objective: Breast cancer survivors (BCS) may experience problems to adjust to their situation after cancer treatment completion. In case of severe distress, an adjustment disorder (AD) might develop. This study investigates the course of AD symptoms during 1 year and its predictors in BCS up to 5 years post-treatment.Methods: BCS completed the Hospital Anxiety and Depression Scale (HADS) at baseline, 3, 6, and 12 months. HADS total scores were defined as no mental disorder (MD) symptoms (≤ 10), AD symptoms (11-14), and any other MD symptoms (≥ 15). Over the course of four assessments, symptom trajectories were a priori defined as no MD symptoms, AD symptoms, fluctuating AD symptoms below and above cut-offs, or any other MD symptoms. Complementary, latent class growth analysis (LCGA) was used to identify data-driven trajectories.Results: Among 293 BCS with complete data, the majority was classified as no MD symptoms (54.4%), followed by 37.5% in the fluctuating AD symptoms trajectory. Only 1.4% had AD symptoms, and 6.8% had any other MD symptoms. With LCGA (N = 459), three trajectories were found: stable no MD symptoms (58.6%), stable AD symptoms (32.9%), and high increasing any other MD symptoms (8.5%). Compared to BCS with no MD symptoms, BCS with fluctuating AD symptoms or any other MD symptoms were younger, less able to handle daily activities, and showed more social support discrepancy, neuroticism, and less optimism.Conclusions: Results of our study showed that AD symptoms in BCS up to 5 years post-treatment fluctuate over 1 year. It is thus important to appropriately assess AD over the course of 5 years post-treatment as AD symptoms can fluctuate. [ABSTRACT FROM AUTHOR]

Objective: High cancer risks, as applicable to BRCA1 and BRCA2 pathogenic variant (PV) carriers, can induce significant cancer concerns. We examined the degree of cancer worry and the course of this worry among BRCA1/2-PV carriers undergoing surgery to prevent ovarian cancer, and identified factors associated with high cancer worry. Methods: Cancer worry was evaluated as part of the multicentre, prospective TUBA-study (NCT02321228) in which BRCA1/2-PV carriers choose either novel risk-reducing salpingectomy with delayed oophorectomy or standard risk-reducing salpingo-oophorectomy. The Cancer Worry Scale was obtained before and 3 and 12 months after surgery. Cancer worry patterns were analysed using latent class growth analysis and associated factors were identified with regression analysis. Results: Of all 577 BRCA1/2-PV carriers, 320 (57%) had high (≥ 14) cancer worry pre-surgery, and 54% had lower worry 12 months post-surgery than pre-surgery. Based on patterns over time, BRCA1/2-PV carriers could be classified into three groups: persistently low cancer worry (56%), persistently high cancer worry (6%), and fluctuating, mostly declining, cancer worry (37%). Factors associated with persistently high cancer concerns were age below 35 (BRCA1) or 40 (BRCA2), unemployment, previous breast cancer, lower education and a more recent BRCA1/2-PV diagnosis. Conclusions: Some degree of cancer worry is considered normal, and most BRCA1/2-PV carriers have declining cancer worry after gynaecological risk-reducing surgery. However, a subset of these BRCA1/2-PV carriers has persisting major cancer concerns up to 1 year after surgery. They should be identified and potentially offered additional support. Clinical trial registration: The TUBA-study is registered at ClinicalTrials.gov since December 11th, 2014. Registration number: NCT02321228. [ABSTRACT FROM AUTHOR]

Background Lung cancer is the leading cause of cancer death worldwide and characterized by a poor prognosis. It has a major impact on the psychological wellbeing of patients and their partners. Recently, it has been shown that Mindfulness-Based Stress Reduction (MBSR) is effective in reducing anxiety and depressive symptoms in cancer patients. The generalization of these results is limited since most participants were female patients with breast cancer. Moreover, only one study examined the effectiveness of MBSR in partners of cancer patients. Therefore, in the present trial we study the effectiveness of MBSR versus treatment as usual (TAU) in patients with lung cancer and their partners. Methods/Design A parallel group, randomized controlled trial is conducted to compare MBSR with TAU. Lung cancer patients who have received or are still under treatment, and their partners are recruited. Assessments will take place at baseline, post intervention and at three-month follow-up. The primary outcome is psychological distress (i.e. anxiety and depressive symptoms). Secondary outcomes are quality of life (only for patients), caregiver appraisal (only for partners), relationship quality and spirituality. In addition, cost-effectiveness ratio (only in patients) and several process variables are assessed. Discussion This trial will provide information about the clinical and cost-effectiveness of MBSR compared to TAU in patients with lung cancer and their partners. Trial registration ClinicalTrials.gov NCT01494883. [ABSTRACT FROM AUTHOR]

Objective: This study systematically reviewed the association of psychological problems among cancer patients with healthcare and societal resource use and costs. Methods: PubMed, PsycINFO, and Embase were searched (until 31 January 2021) for studies on psychological symptoms (anxiety, depression, distress, fear of recurrence) or psychiatric disorders (anxiety, depression, adjustment) and healthcare use (e.g., mental, inpatient healthcare), economic losses by patients and family, economic losses in other sectors (e.g., absence from work), and costs. The search, data extraction, and quality assessment were performed by two authors. Results: Of the 4157 identified records, 49 articles were included (psychological symptoms (n = 34), psychiatric disorders (n = 14), both (n = 1)) which focused on healthcare use (n = 36), economic losses by patients and family (n = 5), economic losses in other sectors (n = 8) and/or costs (n = 13). In total, for 12 of the 94 associations strong evidence was found. Psychological symptoms and psychiatric disorders were positively associated with increased healthcare use (mental, primary, inpatient, outpatient healthcare), losses in other sectors (absence from work), and costs (inpatient, outpatient, total healthcare costs). Moderate evidence was found for a positive association between (any) psychiatric disorder and depression disorder with inpatient healthcare and medication use, respectively. Conclusions: Psychological problems in cancer patients are associated with increased healthcare use, healthcare costs and economic losses. Further research is needed on psychological problems in relation to understudied healthcare use or costs categories, productivity losses, and informal care costs. [ABSTRACT FROM AUTHOR]

Context. Cancer patients are at increased risk for distress. The Distress Thermometer (DT) and problem list (PL) are short-tools validated and recommended for distress screening in cancer patients. Objective. To investigate the level of distress and problems experienced by survivors of differentiated non-medullary thyroid carcinoma (DTC), using the DT and PL and whether this correlates with clinical and demographical variables. Participants, design and setting. All 205 DTC patients, under follow-up at the outpatient clinic of our university hospital, were asked to fill in the DT and PL, hospital anxiety and depression scale (HADS), illness cognition questionnaire (ICQ) and an ad hoc questionnaire. Receiver Operator Characteristic analysis (ROC) was used to establish the optimal DT cut-off score according to HADS. Correlations of questionnaires scores with data on diagnosis, treatment and follow-up collected from medical records were analyzed. Results. Of the 159 respondents, 145 agreed to participate [118 in remission, median follow-up 7.2 years (range 3 months-41 years)]. Of these, 34.3% rated their distress score ≥5, indicating clinically relevant distress according to ROC analysis. Patients reported physical (86%) over emotional problems (76%) as sources of distress. DT scores correlated with HADS scores and ICQ subscales. No significant correlations were found between DT scores and clinical or demographical characteristics except for employment status. Conclusion. Prevalence of distress is high among patients with DTC even after long-term remission and cannot be predicted by clinical and demographical characteristics. DT and PL are useful screening instruments for distress in DTC patients and could easily be incorporated into daily practice. [ABSTRACT FROM AUTHOR]

Context. Cancer patients are at increased risk for distress. The Distress Thermometer (DT) and problem list (PL) are short-tools validated and recommended for distress screening in cancer patients. Objective. To investigate the level of distress and problems experienced by survivors of differentiated non-medullary thyroid carcinoma (DTC), using the DT and PL and whether this correlates with clinical and demographical variables. Participants, design and setting. All 205 DTC patients, under follow-up at the outpatient clinic of our university hospital, were asked to fill in the DT and PL, hospital anxiety and depression scale (HADS), illness cognition questionnaire (ICQ) and an ad hoc questionnaire. Receiver Operator Characteristic analysis (ROC) was used to establish the optimal DT cut-off score according to HADS. Correlations of questionnaires scores with data on diagnosis, treatment and follow-up collected from medical records were analyzed. Results. Of the 159 respondents, 145 agreed to participate [118 in remission, median follow-up 7.2 years (range 3 months-41 years)]. Of these, 34.3% rated their distress score ⩾5, indicating clinically relevant distress according to ROC analysis. Patients reported physical (86%) over emotional problems (76%) as sources of distress. DT scores correlated with HADS scores and ICQ subscales. No significant correlations were found between DT scores and clinical or demographical characteristics except for employment status. Conclusion. Prevalence of distress is high among patients with DTC even after long-term remission and cannot be predicted by clinical and demographical characteristics. DT and PL are useful screening instruments for distress in DTC patients and could easily be incorporated into daily practice. [ABSTRACT FROM AUTHOR]

Background: Entering medicine for the first time is highly impressive for students, but we know little about the actual emotional learning processes taking place. Aims: We aimed to get more insight into expectations, experiences and emotions of students during their first clinical experiences in a hospital compared to a nursing home. Methods: We carried out a qualitative and a quantitative survey by administering questionnaires about expectations, impressive experiences and learning activities within two cohorts of first-year medical students before and after a 4-week nursing attachment. Results: Despite different expectations, students reported similar experiences and learning activities for the nursing home and the hospital. Most impressive events were related to patient care, being a trainee, or professional identities being challenged. Students in nursing homes most often referred to their own relationships with patients. Students expressed different emotions, and frequently experienced positive and negative emotions at the same time. Conclusions: Rewarding experiences (not only difficult or stressful events) do matter for medical professional development. Students need to learn how to deal with and feel strengthened by the emotions evoked during clinical experiences, which should be supported by educators. The nursing home and the hospital seem to be equally suited as learning environments. [ABSTRACT FROM AUTHOR]

Abstract: Objective: Cognitive behavior therapy (CBT) leads to a significant reduction in fatigue severity and impairment in patients with chronic fatigue syndrome (CFS). The purpose of the present study was to determine whether the effect of CBT for CFS on fatigue and impairment is mediated by a decrease in avoidance behavior and focusing on fatigue. Methods: For this purpose, we reanalyzed a randomized controlled trial which was previously conducted to test the efficacy of CBT for CFS. Two hundred nineteen patients completed assessment prior and subsequent to treatment or a control group period. Results: Mediation analysis revealed that a decrease in focusing on fatigue mediated the effect of CBT for CFS on fatigue and impairment. Avoidance of activity and avoidance of aversive stimuli were not significantly changed by treatment and were therefore excluded from mediation analysis. Conclusion: A decrease in the focus on fatigue seems to contribute to the treatment effect of CBT for CFS. [Copyright &y& Elsevier]

Abstract: Many patients with chronic fatigue syndrome (CFS) seem to experience periods in which they are homebound due to their symptomatology. Despite a growing body of research about CFS, little is known about patients who no longer feel able to leave their homes. The purpose of the present study was to examine whether homebound patients differ from other CFS patients on illness-specific characteristics. Besides experiencing more impairment in daily functioning than participants of an outpatient intervention study, homebound patients were characterised by extremely high levels of daily fatigue, predominant somatic attributions, and pervasively passive activity patterns. The course of symptomatology was similarly stable in both groups. Our findings suggest that homebound patients form a distinct subgroup of CFS patients who might profit from a treatment approach that is tailored to their specific needs. The exploratory nature of this first systematic investigation of homebound CFS patients is stressed, and suggestions for future research are made. [Copyright &y& Elsevier]

Abstract: Patients with chronic fatigue syndrome (CFS) frequently report chronic pain symptoms. Cognitive behavioural therapy (CBT) for CFS results in a reduction of fatigue, but is not aimed at pain symptoms. In this study, we tested the hypothesis that a successful treatment of CFS can also lead to a reduction of pain. The second objective was to explore possible mechanisms of changes in pain. The third objective was to assess the predictive value of pain for treatment outcome. Data from two previous CBT studies were used, one of adult CFS patients (n=96) and one of adolescent CFS patients (n=32). Pain severity was assessed with a daily self-observation list at baseline and post-treatment. The location of pain in adults was assessed with the McGill Pain Questionnaire (MPQ). Patients were divided into recovered and non-recovered groups. Recovery was defined as reaching a post-treatment level of fatigue within normal range. Recovered adult and adolescent CFS patients reported a significant reduction of pain severity compared to non-recovered patients. Recovered adult patients also had fewer pain locations following treatment. The decrease in fatigue predicted the change in pain severity. In adult patients, a higher pain severity at baseline was associated with a negative treatment outcome. [Copyright &y& Elsevier]

This study aimed to identify health-related quality of life (HRQoL) issues of relevance for adolescent and young adult (AYA) cancer patients, the perception of relevant HRQoL issues for AYA in generalby the health care professionals (HCP), and discrepancies between issues identified by AYAs and HCP. Dutch AYAs aged 18–35 years at the time of cancer diagnosis (N = 83) and HCPs (N = 34) involved in AYA oncology were invited to complete the Quality of Life for Cancer Survivors questionnaire. HCPs rated physical symptoms such as fatigue, appetite, pain, constipation, sleep disorders, nausea and neuropathy among AYA cancer patients significantly higher (i.e., more problems) than AYA cancer patients. AYA cancer patients rated overall physical health and quality of life, happiness, satisfaction, usefulness and support from others, all positively formulated questions, significantly higher (i.e., more positive) than HCPs. The most highly rated issues (negative and positive combined) for AYAs were: perceived support from others, distress about initial cancer diagnosis, distress for family and overall quality of life. HCPs identified distress about diagnosis, treatment, family and interference of illness with employment/study as the most problematic issues (all negative) for AYAs. Five of the ten most common issues listed by patients and HCPs were the same. Male AYAs, patients treated with curative intent and those with a partner rated positive HRQoL issues higher than their counterparts. The discrepancy between the perception of patients and HCPs illustrates the importance of patient involvement in organizing physical and psychosocial care. [ABSTRACT FROM AUTHOR]

Background: Mindfulness-Based Stress Reduction (MBSR) has been shown to reduce psychological distress in cancer patients but not their partners. Whether MBSR can support patients and partners in coping with the dying and grieving process is less well examined. Aim: We aimed to gain more insight in the role of mindfulness in the dying and grieving process from the perspective of the partner after the patient's death. Design: As part of a pilot study or subsequent randomized controlled trial, partners had participated together with the patient in MBSR. After the patient's death partners were invited for qualitative in-depth interviews. Data from the interviews was analyzed using the grounded theory approach. Setting/participants: Interviews were conducted with 11 partners in their homes, on average 11 months after the patient's death (SD = 7.8). Results: Mindfulness helped couples to allow and regulate difficult thoughts and feelings, which in turn helped them to accept the patient's impending death. It also facilitated them to enjoy things together and communicate more openly. For a few couples, however, participation was physically too burdensome or emotionally too confrontational. During the partners' grieving process, mindfulness helped allowing difficult thoughts and feelings, and taking the time to grieve, which helped them to take good care of themselves, giving them faith in the future. Conclusion: The present study showed that MBSR can facilitate lung cancer patients and their partners in accepting the forthcoming death and openly communicating about this, which can support a peaceful death and healthy grieving process. [ABSTRACT FROM AUTHOR]