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Purpose: Fear of cancer recurrence (FCR) interventions are effective, but few are implemented. This study aimed to identify barriers and facilitators for implementing the evidence-based blended SWORD intervention in routine psycho-oncological care. Methods: Semi-structured interviews with 19 cancer survivors and 18 professionals from three healthcare settings assessed barriers and facilitators in six domains as described by the determinant frameworks of Grol and Flottorp: (1) innovation, (2) professionals, (3) patients, (4) social context, (5) organization, and (6) economic and political context. Results: In the innovation domain, there were few barriers. Facilitators included high reliability, accessibility, and relevance of SWORD. In the professional domain, physicians and nurses barriers were lack of self-efficacy, knowledge, and skills to address FCR whereas psychologists had sufficient knowledge and skills, but some were critical towards protocolized treatments, cognitive behavioral therapy, or eHealth. Patient domain barriers included lack of FCR awareness, negative expectations of psychotherapy, and unwillingness/inability to actively engage in treatment. A social context domain barrier was poor communication between different healthcare professionals. Organization domain barriers included inadequate referral structures to psychological services, limited capacity, and complex legal procedures. Economic and political context domain barriers included lack of a national implementation structure for evidence-based psycho-oncological interventions and eHealth platform costs. Conclusions: Implementation strategies should be targeted at patient, professional, organizational and economic and political domains. Identified barriers and facilitators are relevant to other researchers in psycho-oncology that aim to bridge the research-practice gap. Implications for cancer survivors: This study contributes to the implementation of evidence-based psychological interventions for cancer survivors, who can benefit from these services. [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]

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]

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]

Purpose: Knowledge of caregivers' burden and fatigue before and after patients' treatment for locally advanced head and neck cancer is scarce. Therefore, we aimed to explore caregivers' fatigue and burden in relation to patients' fatigue, distress, and quality of life.Methods: For caregivers, burden and fatigue were assessed. For patients, fatigue severity, distress, and health-related quality of life (HRQoL) were assessed. Measurements were conducted prior to treatment, 1 week, and 3 months after chemoradiotherapy.Results: Caregivers' burden and fatigue followed patients' high peak in distress, fatigue, and diminished HRQoL as a consequence of treatment. Caregivers' baseline fatigue was a predictor for fatigue after chemoradiotherapy. Female spouses with higher baseline levels of fatigue and burden and caring for patients with lower levels of HRQoL seem risk factors for burden after chemoradiotherapy.Conclusions: Attention should be paid to caregivers' burden and fatigue before starting patients' intense treatment with chemoradiotherapy, as both burden and fatigue before starting treatment may contribute to burden and fatigue after chemoradiotherapy. [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]

Purpose: In order to understand the multidimensional mechanism of fear of cancer recurrence (FCR) and to identify potential targets for interventions, it is important to empirically test the theoretical model of FCR. This study aims at assessing the validity of Lee-Jones et al.'s FCR model.Methods: A total of 1205 breast cancer survivors were invited to participate in this study. Participants received a questionnaire booklet including questionnaires on demographics and psychosocial variables including FCR. Data analysis consisted of the estimation of direct and indirect effects in mediator models.Results: A total of 460 women (38 %) participated in the study. Median age was 55.8 years (range 32-87). Indirect effects of external and internal cues via FCR were found for all mediation models with limited planning for the future (R 2 = .28) and body checking (R 2 = .11-.15) as behavioral response variables, with the largest effects for limited planning for the future. A direct relation was found between feeling sick and seeking professional advice, not mediated by FCR.Conclusions: In the first tested models of FCR, all internal and external cues were associated with higher FCR. In the models with limited planning for the future and body checking as behavioral response, an indirect effect of cues via FCR was found supporting the theoretical model of Lee-Jones et al.Implications For Cancer Survivors: An evidence-based model of FCR may facilitate the development of appropriate interventions to manage FCR in breast cancer survivors. [ABSTRACT FROM AUTHOR]

This case study describes the course and content of cognitive behavior therapy (CBT) for clinical fear of cancer recurrence (FCR) in a breast cancer survivor. The CBT for clinical FCR consisted of seven face-to-face therapy sessions and one telephone session. The primary treatment goal was to reduce FCR severity by modifying cognitive processes and dysfunctional behavior. Assessments of FCR and quality of life were completed by the breast cancer survivor pre-therapy, post-therapy, and at 6 and 12 months of post-therapy. In each treatment session, perceived control over FCR was assessed. A clinical nurse specialist participated in evaluation interviews. The patient’s perceived control over FCR increased during the therapy, and FCR severity declined to a non-clinical level. This improvement was still evident at the 6- and 12-month follow-up assessments and was supported by results for secondary and exploratory outcomes measures. FCR offers a great challenge for health care professionals due to the lack of effective treatment options. This case study shows how clinical FCR can be addressed with CBT and can contribute to the improvement of care for cancer survivors. [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]

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. [ABSTRACT FROM AUTHOR]

Purpose: The CONDOR study showed that docetaxel/cisplatin/5-fluorouracil (TPF) followed by conventional radiotherapy with cisplatin 100 mg/m2 on days 1, 22, and 43 (cis100 + RT; n = 27)) versus accelerated radiotherapy with cisplatin weekly 40 mg/m2 (cis40 + ART; n = 29) in locally advanced head and neck cancer (LAHNC) patients was not feasible. Here, we report the analysis of health-related quality of life (HRQOL) of the patients entered in this study.Methods: HRQOL was assessed at baseline, after two TPF, before start of chemoradiotherapy, and 1, 4, 8, 12, and 24 months after completion of chemoradiotherapy using the EORTC-QLQ-C30 and QLQ-H&N35 in 62 patients.Results: Compliance with the QOL questionnaires was 94% (59/62) at baseline and 61% (30/49) at 12 months, respectively. HRQOL decreased after TPF and further decreased during chemoradiohteray in both arms equally. Pain and swallowing dysfunction improved significantly during TPF but deteriorated below baseline levels during chemoradiotherapy, cis40 + ART > cis100 + RT (p < 0.05). HRQOL and symptoms restored to baseline within 12 months in both arms and remained at that level until 24 months.Conclusions: After TPF, cis40 + ART had a larger negative impact on symptoms than cis100 + RT, probably due to the ART. HRQOL and symptoms restored to baseline levels within 12 months after end of treatment in both arms, which is an important perspective for patients during the phase of most serious acute side effects of treatment.Trial Registration: NCT00774319. [ABSTRACT FROM AUTHOR]

Purpose: The purposes of the study are to identify clinical phenotypes that reflect the level of adaptation to the disease and to examine whether these clinical phenotypes respond differently to treatment as usual (TAU) and pulmonary rehabilitation (PR), the latter with its strong emphasis on improving adaptation. Methods: Clusters were identified by a cluster analysis using data on many subdomains of the four domains of health status (HS) (physiological functioning, functional impairment, symptoms and quality of life) in 160 outpatients with chronic obstructive pulmonary disease (COPD) receiving TAU. By discriminant analysis in the TAU sample, all 459 PR patients could be assigned to one of the identified clusters. The effect of TAU and PR on HS was examined with paired t tests. Results: Three distinct phenotypes were identified in the TAU sample. Two types were labelled adapted: phenotype 1 (moderate COPD-low impact on HS, n = 53) and phenotype 3 (severe COPD-moderate impact on HS, n = 73). One type was labelled non-adapted: phenotype 2 (moderate COPD-high impact on HS, n = 34). After 1-year TAU, the integral health status of all patients did not improve in any subdomain. In contrast, at the end of PR, significant improvements in HS were found in all three phenotypes especially the non-adapted. Conclusions: Different phenotypes exist in COPD that are based on behavioural aspects (i.e. the level of adaptation to the disease). Non-adapted patient responds better to treatments with a strong emphasis on improving adaptation by learning the patient better self-management skills. Knowing to which clinical phenotype a patient belongs helps to optimize patient-tailored treatment. [ABSTRACT FROM AUTHOR]

Lung cancer patients and their spouses report high rates of distress. Due to the increasing popularity of and evidence for mindfulness-based interventions in cancer, mindfulness and self-compassion have been identified as potentially helpful skills when coping with cancer. This dyadic study examined how mindfulness and self-compassion are related to psychological distress and communication about cancer in couples facing lung cancer. Using the actor-partner interdependence model, self-reported mindfulness, self-compassion, psychological distress and communication about cancer were analyzed in a cross-sectional sample of 88 couples facing lung cancer. Regarding psychological distress, no difference was found between patients and spouses. In both partners, own levels of mindfulness ( B = −0.19, p = .002) and self-compassion ( B = −0.45, p < .001) were negatively related to own distress levels. At a dyadic level, own self-compassion was less strongly associated with distress if the partner reported high self-compassion ( B = 0.03, p = .049). Regarding communication about cancer, patients reported to communicate more openly with their partner than with spouses. However, after controlling for gender, this difference was no longer significant. In both partners, own self-compassion ( B = 0.03, p = .010) was significantly associated with own communication while mindfulness was not. A trend showed that mindfulness of the partner was related to more open communication in the individual ( B = 0.01, p = .080). These findings give a first indication that mindfulness and self-compassion skills may go beyond the individual and could impact couple functioning. Future research should examine whether couples facing (lung) cancer may benefit from programs in which mindfulness and self-compassion are cultivated. [ABSTRACT FROM AUTHOR]

Purpose: Research to date on fear of cancer recurrence (FCR) shows that moderate to high FCR affects 22-87 % of cancer survivors and is associated with higher psychological morbidity (Simard et al J Cancer Surviv 7:300-322, 2013). Despite growing research interest in FCR, the lack of consensus on its definition and characteristics when it reaches a clinical level has impeded knowledge transfer into patient services.Methods: In order to address these gaps, expert researchers, policy makers, trainees, and patient advocates attended a 2-day colloquium at the University of Ottawa in August 2015. A Delphi method was used to identify the most relevant definition of FCR, and the attendees generated possible diagnostic characteristics of clinical FCR.Results: After three rounds of discussion and voting, the attendees reached consensus on a new definition of FCR: "Fear, worry, or concern relating to the possibility that cancer will come back or progress." Regarding clinical FCR, five possible characteristics were proposed: (1) high levels of preoccupation, worry, rumination, or intrusive thoughts; (2) maladaptive coping; (3) functional impairments; (4) excessive distress; and (5) difficulties making plans for the future.Conclusions: The new proposed definition of FCR reflects the broad spectrum in which patients experience FCR. A consensual definition of FCR and the identification of the essential characteristics of clinical FCR are necessary to accurately and consistently measure FCR severity and to develop effective interventions to treat FCR. We hope this broad definition can encourage further research and the development of inclusive policies for all cancer patients and survivors who are struggling with this issue. [ABSTRACT FROM AUTHOR]

Currently, most breast cancer (BC) patients receive face-to-face genetic counseling (DNA-intake) prior to BRCA-mutation testing, with generic information regarding hereditary BC and BRCA-mutation testing. This prospective study evaluated a novel format: replacing the intake consultation with telephone, written and digital information sent home, and face-to-face contact following BRCA-mutation testing (DNA-direct). From August 2011 to February 2012, 161 of 233 eligible BC patients referred to our Human Genetics department chose between DNA-direct (intervention) or DNA-intake (control). Exclusion criteria were psychological problems (n = 33), difficulty with Dutch text (n = 5), known BRCA-family (n = 3), non- BRCA-referral (n = 1). 30 declined genetic counseling or study participation. Participants received questionnaires including satisfaction and psychological distress. 59 % chose DNA-direct ( p = 0.03), of whom 90 % were satisfied and would choose DNA-direct again (including 6/8 BRCA-mutation carriers); although 27 % hesitated to recommend DNA-direct to other patients. General distress (GHQ-12, p = 0.001) and heredity-specific distress (IES, p = 0.02) scored lower in DNA-direct than DNA-intake, both at baseline and follow-up 2 weeks after BRCA-result disclosure; all scores remained below clinical relevance. DNA-direct participants reported higher website use (53 vs. 32 %, p = 0.01), more referrer information about personal consequences (41 vs. 20 %, p = 0.004) and lower decisional conflict (median 20 [0-88] vs. 25 [0-50], p = 0.01). Processing time in DNA-direct was reduced by 1 month. Mutation detection rate was 8 % in both groups. All BRCA-mutation carriers fulfilled current testing criteria. In conclusion, more BC patients preferred DNA-direct over intake consultation prior to BRCA-mutation testing, the majority being strongly to moderately satisfied with the procedure followed, without increased distress. [ABSTRACT FROM AUTHOR]

Background: Patients with chronic obstructive pulmonary disease (COPD) encounter many (gradual) losses due to their disease, which trigger a grieving process. This process is characterized by stages of denial, resistance, sorrow, and acceptance. Purpose: This study examined whether these stages are conceptually distinct and whether the Acceptance of Disease and Impairments Questionnaire (ADIQ) can validly and reliably measure these stages in three samples of patients with COPD in the Netherlands. Methods: Exploratory factor analysis (EFA) was performed on 145 outpatients with moderate to severe COPD. Confirmatory factor analyses were performed on 303 outpatients with mild to very severe COPD and 127 patients entering an inpatient pulmonary rehabilitation program. Furthermore, internal reliability, construct validity, sensitivity to change, and floor and ceiling effects were examined. Results: EFA yielded a four-factor solution that explained 73.2 % of variance. Confirmatory factor analyses showed a good fit of the four-factor structure in all study samples. Cronbach's alpha reliability coefficients were .79 or higher. Subscales showed to be sensitive to change. Conclusions: Four distinct stages of grief are recognized in COPD. The ADIQ is a valid and reliable instrument to measure these stages: denial, resistance, sorrow, and acceptance. Measuring the stages of grieving is important for disease management: addressing patients with a specific therapeutic approach for the stage they are in could help to motivate patients to engage in self-management and change their lifestyle. [ABSTRACT FROM AUTHOR]

DNA-testing for BRCA1/2 or Lynch syndrome is possible from the age of 18 years, although surveillance usually starts at 25. Some patients regret their decision of testing before age 25. This retrospective study evaluates whether the testing age should be above 25 years to prevent adverse effects such as regret or decisional conflict, by determining the percentage and characteristics of patients reporting these problems. 111 of 219 patients (51 %) tested for BRCA1/2 mutations or Lynch syndrome between 18 and 25 years from July 1996 to February 2011, returned self-report surveys. Primary measures were regret, decisional conflict and family influence. Secondary measures included quality of life (QoL), coping style, impact of genetic testing, and risk perception. Median age was 27 [21–40] years, with 86 % female. 73 % was tested for BRCA1/2, 27 % for Lynch syndrome. Only 3 % reported regret, however 39 % had moderate (32 %) to severe (7 %) decisional conflict. Regression analysis revealed that decisional conflict was associated with more monitoring/neutral coping style ( p < 0.03) or paternal/no family mutation ( p < 0.02); there were no differences in QoL, impact or risk perception. 42 % were mutation carriers, showing equal decisional conflict to non-carriers. 68 % would recommend testing <25 years; 77 % desired surveillance <25 years if a mutation carrier. Almost no patient tested for hereditary cancer between 18 and 25 years regretted this decision. A third reported retrospective decisional conflict, especially those actively seeking information when faced with a threat and/or those with a paternal or unknown inheritance. These patients may benefit from decisional support and personalized information. [ABSTRACT FROM AUTHOR]

Background: To improve psychosocial care, the National Comprehensive Cancer Network recommends the use of the Distress Thermometer (DT) to detect distress among cancer patients. Objectives: The objectives of this study were to describe the prevalence of distress in breast cancer survivors (BCSs) and to investigate demographic, treatment, and psychosocial variables associated with distress and problems most often reported on the problem list. Moreover, we assessed how many BCSs requested referral to a professional for additional support. Methods: In a cross-sectional study, 258 BCSs identified at an outpatient clinic of a university hospital were asked to complete the following questionnaires: DT, Quality of Life Questionnaire, Hospital Anxiety and Depression Scale, and Illness Cognition Questionnaire. Results: Of the 258 identified BCSs, 129 (50 %) completed all questionnaires. After a mean follow-up period of 5.6 (SD, 10) years, 47 (36 %) of these 129 BCSs experienced distress as assessed by the DT. BCSs experienced significantly more distress in the first 2 years than in the period between 2 and 5 years after surgery. Also, more distress was experienced in BCSs treated with surgery, radiotherapy, and chemotherapy compared to those treated with surgery only. Problems most frequently encountered were fatigue (57 %), decrease in muscle strength (47 %), and lack of physical fitness (42 %). Thirty one (69 %) of the distressed BCSs requested or considered referral to a professional. Regression analysis showed that reduced quality of life, reduced cognitive function, and fatigue were predictors of distress. Conclusion: The current study found that more than one third of all BCSs experienced distress. Screening remains an important part of BCSs' care. The professional should be aware of the potential problems and distress patients may experience. [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]

Purpose: Depression is highly prevalent in advanced cancer patients, but the diagnosis of depressive disorder in patients with advanced cancer is difficult. Screening instruments could facilitate diagnosing depressive disorder in patients with advanced cancer. The aim of this study was to determine the validity of the Beck Depression Inventory (BDI-II) and a single screening question as screening tools for depressive disorder in advanced cancer patients. Methods: Patients with advanced metastatic disease, visiting the outpatient palliative care department, were asked to fill out a self-questionnaire containing the Beck Depression Inventory (BDI-II) and a single screening question 'Are you feeling depressed?' The mood section of the PRIME-MD was used as a gold standard. Results: Sixty-one patients with advanced metastatic disease were eligible to be included in the study. Complete data were obtained from 46 patients. The area under the curve of the receiver operating characteristics analysis of the BDI-II was 0.82. The optimal cut-off point of the BDI-II was 16 with a sensitivity of 90% and a specificity of 69%. The single screening question showed a sensitivity of 50% and a specificity of 94%. Conclusions: The BDI-II seems an adequate screening tool for a depressive disorder in advanced cancer patients. The sensitivity of a single screening question is poor. [ABSTRACT FROM AUTHOR]

Women with a BRCA mutation face a complex choice between breast cancer surveillance and prophylactic mastectomy. We determined risk management preferences shortly after genetic test disclosure and mastectomy status after a median observation period of 2 years. The effect of an educational-support group on the realisation of risk management preference was explored. We included 163 newly disclosed BRCA mutation carriers with no history of cancer, whose breast cancer risk management preferences were recorded. All carriers were offered the opportunity to participate an educational-support group. Mastectomy status was checked after a median observation period of 2 years. Of the total sample, 27% had an initial preference for mastectomy and 48% attended an educational-support group. After a median observation period of 2 years, 30% of the total sample had undergone prophylactic mastectomy. Of the women with a preference for surveillance, 90% of educational-support group attendees and 88% of the other mutation carriers, were still under surveillance. The number of women with a preference for mastectomy who actually had a mastectomy performed, was significantly higher in the group that attended an educational-support group as compared to those who did not, 89% and 63% respectively (OR 4.8, P = 0.04). Strong predictors for prophylactic mastectomy within 2 years were younger age and prior preference for mastectomy ( R2 = 0.57). Nearly all BRCA mutation carriers proceed with their initial choice for surveillance or prophylactic mastectomy. The study provides presumptive evidence that educational-support group participants decide to undergo prophylactic mastectomy earlier than non-attendees. [ABSTRACT FROM AUTHOR]

An increasing number of patients with colorectal cancer (CRC) receive genetic counselling within 1 year after diagnosis. Little is known whether specific subgroups are more vulnerable for genetic testing related distress. A literature review was conducted to identify the psychological impact of CRC in the first year, and the additional impact of genetic testing. The electronic databases of PubMed, PsychInfo, Embase and the Cochrane Library were searched to identify all reports published between January 1997 and October 2007 on the psychological impact of (1) CRC-diagnosis up to 1 year after treatment and of (2) genetic testing for Lynch syndrome in patients with CRC. Studies on the psychological impact of genetic testing in newly diagnosed patient with CRC were not available. Either CRC patients diagnosed several years ago were studied and the focus was also often on the psychological impact of genetic testing prior to DNA-test disclosure. They show that limitations in emotional and social functioning can persist up to 1 year after CRC treatment, especially in those with a stoma or diagnosed before age 60. Female patients and male patients diagnosed before age 50 appear to be more vulnerable to genetic test-related distress. It is well known that being treated for CRC has great impact on psychological functioning. Little is known about the psychological impact during the first year after diagnosis and very little is known about the additional psychological effect of genetic testing for hereditary cancer in this period. We found presumptive evidence that specific subgroups of patients with CRC are more vulnerable for genetic-testing-related distress. [ABSTRACT FROM AUTHOR]

Nail-patella syndrome (NPS) is characterized by developmental defects of dorsal limb structures, nephropathy, and glaucoma and is caused by heterozygous mutations in the LIM homeodomain transcription factor LMX1B. In order to identify possible genotype–phenotype correlations, we performed LMX1B mutation analysis and comprehensive investigations of limb, renal, ocular, and audiological characteristics in 106 subjects from 32 NPS families. Remarkable phenotypic variability at the individual, intrafamilial, and interfamilial level was observed for different NPS manifestations. Quantitative urinanalysis revealed proteinuria in 21.3% of individuals. Microalbuminuria was detected in 21.7% of subjects without overt proteinuria. Interestingly, nephropathy appeared significantly more frequent in females. A significant association was established between the presence of clinically relevant renal involvement in an NPS patient and a positive family history of nephropathy. We identified normal-tension glaucoma (NTG) and sensorineural hearing impairment as new symptoms associated with NPS. Sequencing of LMX1B revealed 18 different mutations, including six novel variants, in 28 families. Individuals with an LMX1B mutation located in the homeodomain showed significantly more frequent and higher values of proteinuria compared to subjects carrying mutations in the LIM domains. No clear genotype–phenotype association was apparent for extrarenal manifestations. This is the first study indicating that family history of nephropathy and mutation location might be important in precipitating individual risks for developing NPS renal disease. We suggest that the NPS phenotype is broader than previously described and that NTG and hearing impairment are part of NPS. Further studies on modifier factors are needed to understand the mechanisms underlying phenotypic heterogeneity.European Journal of Human Genetics (2005) 13, 935–946. doi:10.1038/sj.ejhg.5201446; published online 1 June 2005 [ABSTRACT FROM AUTHOR]

The article presents a correction to a report on "Prevalence and impact of severe fatigue in adolescent and young adult cancer patients in comparison with population-based controls" published in a previous issue of 2017.

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The goal of our work was to assess fatigue in disease-free cancer patients with help of a validated fatigue questionnaire. Furthermore, we wished to analyse the relationship between severe fatigue and former treatment modalities, problems of concentration and motivation, physical activity, functional impairment, depression and anxiety and finally, to compare severely fatigued disease-free cancer patients and patients with Chronic Fatigue Syndrome (CFS). The participants were 85 adult cancer patients and 16 patients with CFS. The cancer patients were all disease-free and had been off treatment for a minimum of 6 months. They were asked to participate in this study by their physician when they came to the hospital for control visits. Patients who were willing to participate completed four questionnaires. The Checklist Individual Strength was used to measure fatigue. In addition, the Beck Depression Inventory, the Spielberger Trait Anxiety Inventory and the Nottingham Health Profile were used. Results indicate that 19% of the disease-free cancer patients were severely fatigued. Their fatigue experience is comparable to that of patients with CFS. Severe fatigue is associated with problems of concentration and motivation, reduced physical activity, emotional health problems and pain. Furthermore, a relation was found between fatigue and depression and anxiety. No relation was found between fatigue and type of cancer, former treatment modalities, duration of treatment and time since treatment ended. In conclusion, for one fifth of a group of disease-free cancer patients fatigue is a severe problem long after treatment. In addition to fatigue, these patients experience several psychological and physical problems. [ABSTRACT FROM AUTHOR]

Objective: To test the psychometric properties of the Dutch 45-item Supportive Care Needs Survey—Partners and Caregivers (SCNS-P&C45-D) among partners of women with breast cancer living in the Netherlands. Methods: In this cross-sectional validation study, partners of patients with breast cancer were invited to complete a survey on the patient's cancer and the caregiver's level of unmet needs (SCNS-P&C45-D), psychological distress (HADS) and burden (EDIZ). Results: 43% of the invited informal caregivers responded (n = 302). Flooring effects were identified for three items of the SCNS-P&C45-D,which were then deleted from further analysis. The original factor structure and loading pattern of the SCNS-P&C45-D was not replicated. Internal consistency of the SCNS-P&C45-D and all subscales' (emotional and relational needs, health care and illness related needs, practical needs, work and social needs) Cronbach's alpha coefficients exceeded 0.80, the entire measure's Cronbach's alpha is 0.98. Most SCNS-P&C45-D subscales showed moderate correlations with distress and burden from informal care which was in line with expectations based on validity. The domain 'Work and Social needs' showed a high correlation with burden from informal care. Participants reported significantly more or higher unmet needs if they were younger (25.5% vs. 20.3% in older patients, p = 0.004), if diagnosis was less than 1 year ago in one subscale (Health Care and Illness related needs; 19.5% and 18%, p = 0.029, and the total SCNS-P&C45-D; 23.2% vs. 22.4%, p = 0.018). Conclusions: The SCNS-P&C45-D is able to identify those partners of patients with breast cancer in need and those who are not. [ABSTRACT FROM AUTHOR]