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Purpose: The study investigated peer and caregiver navigators’ motivations for providing support, i.e., benefit finding, their mental and physical health, and program satisfaction. Methods: A web-based peer navigation program was conducted for prostate cancer patients and caregivers over a 6-month time period. In a one-arm observational study, peer and caregiver navigators were asked to complete standardized mental health (Hospital Anxiety and Depression Scale, Cancer Worry Scale), quality of life (EQ-5D-5L, EQ-VAS), and social support (ENRICHD Social Support Instrument) scales pre- and post-intervention and questionnaires addressing motivations, benefits, and program satisfaction post-intervention. Results: Both peer and caregiver navigators reported very low anxiety and depressive symptoms across time. Cancer worry increased over time with 25% of participants exceeding the symptom threshold at baseline and 33% at follow-up. Quality of life was very high but slightly decreased over time (90.0% vs. 84.4%; p =.005), indicative of a greater number of navigators reporting pain/discomfort at follow-up. Social support was high (86.9% vs. 85.9%) and remained so. Top five role endorsements were (1) a feeling of belonging, (2) being involved in something good, (3) giving back, (4) feeling better as a person, and (5) improved communication skills. Program satisfaction was very high with support from program staff rated highest. Conclusions: The study indicates that peer and caregiver navigators exhibited favorable physical and mental health across time. Furthermore, they experienced several benefits from navigation including a sense of meaning and the wish to give back. Results suggest that support provision within the peer and caregiver navigation program has also salutary effects for navigators. [ABSTRACT FROM AUTHOR]

Background: Women with BRCA1/2 mutations have a higher risk of developing breast and ovarian cancer compared to women of the general population. Various preventive options are available to deal with the increased risk of developing cancer. These include intensified breast cancer screening and risk-reducing bilateral mastectomy and salpingo-oophorectomy. The choice of a preventive option can lead to increased decisional conflict. To support these women in their decision-making process, two evidence-based decision aids were developed in an upstream research process and adapted to the German healthcare context. These will be evaluated within a randomised controlled trial (RCT) in terms of their effects on decision-making, women's level of information and psychological outcome variables. Methods: A sample of 310 women carrying BRCA1/2 mutations (A) without a history of cancer or (B) with a history of unilateral breast cancer who have received post-test genetic counselling will be enrolled. Upon study consent, women will be randomly assigned to either the intervention or the control group. All participants will receive standard care including a physician's letter summarising the counselling content. After baseline data collection (t0), the intervention group receives the respective decision aid while the control group receives standard care only. The primary outcome variable assessed at a 3-month follow-up (t1) is the change of extent in decisional conflict (measured with the Decisional Conflict Scale). Secondary outcome variables comprise the stage of decision-making, self-reported symptoms of anxiety, depression and stress due to the genetic test result, and knowledge regarding cancer risks and preventive options. At t1, the extent of preparation for decision-making and acceptability of the decision aids will also be examined. Another secondary outcome variable assessed at 6-month follow-up (t2) is the extent of decision regret. Discussion: These will be the first decision aids available for BRCA1/2 mutation carriers in Germany to be evaluated regarding their effectiveness and acceptability in clinical use within an RCT. Subsequently, they are to be integrated into the care concept of the centres of the German Consortium for Hereditary Breast and Ovarian Cancer and the affiliated breast centres. Trial registration {2a}: DRKS DRKS00015823. Retrospectively registered on 14 June 2019 [ABSTRACT FROM AUTHOR]

Background: Women with BRCA1/2 mutations have a higher risk of developing breast and ovarian cancer compared to women of the general population. Various preventive options are available to deal with the increased risk of developing cancer. These include intensified breast cancer screening and risk-reducing bilateral mastectomy and salpingo-oophorectomy. The choice of a preventive option can lead to increased decisional conflict. To support these women in their decision-making process, two evidence-based decision aids were developed in an upstream research process and adapted to the German healthcare context. These will be evaluated within a randomised controlled trial (RCT) in terms of their effects on decision-making, women's level of information and psychological outcome variables.Methods: A sample of 310 women carrying BRCA1/2 mutations (A) without a history of cancer or (B) with a history of unilateral breast cancer who have received post-test genetic counselling will be enrolled. Upon study consent, women will be randomly assigned to either the intervention or the control group. All participants will receive standard care including a physician's letter summarising the counselling content. After baseline data collection (t0), the intervention group receives the respective decision aid while the control group receives standard care only. The primary outcome variable assessed at a 3-month follow-up (t1) is the change of extent in decisional conflict (measured with the Decisional Conflict Scale). Secondary outcome variables comprise the stage of decision-making, self-reported symptoms of anxiety, depression and stress due to the genetic test result, and knowledge regarding cancer risks and preventive options. At t1, the extent of preparation for decision-making and acceptability of the decision aids will also be examined. Another secondary outcome variable assessed at 6-month follow-up (t2) is the extent of decision regret.Discussion: These will be the first decision aids available for BRCA1/2 mutation carriers in Germany to be evaluated regarding their effectiveness and acceptability in clinical use within an RCT. Subsequently, they are to be integrated into the care concept of the centres of the German Consortium for Hereditary Breast and Ovarian Cancer and the affiliated breast centres. TRIAL REGISTRATION {2A}: DRKS DRKS00015823 . Retrospectively registered on 14 June 2019. [ABSTRACT FROM AUTHOR]

Background: Women with pathogenic BRCA1 and BRCA2 mutations possess a high risk of developing breast and ovarian cancer. They face difficult choices when considering preventive options. This study presents the development process of the first decision aids to support this complex decision-making process in the German healthcare system.Methods: A six-step development process based on the International Patient Decision Aid Standards was used, including a systematic literature review of existing decision aids, a topical medical literature review, preparation of the decision aids, focus group discussions with women with BRCA1/2 mutations, internal and external reviews by clinical and self-help experts, and user tests. All reviews were followed by iterative revisions.Results: No existing decision aids were transferable to the German setting. The medical research revealed a need to develop separate decision aids for women with BRCA1/2 mutations (A) without a history of cancer (previvors) and (B) with a history of unilateral breast cancer (survivors). The focus group discussions confirmed a high level of approval for the decision aids from both target groups. Additionally, previvors requested more information on risk-reducing breast surgery, risk-reducing removal of both ovaries and Fallopian tubes, and psychological aspects; survivors especially wanted more information on breast cancer on the affected side (e.g. biological parameters, treatment, and risk of recurrence).Conclusions: In a structured process, two target-group-specific DAs for previvors/survivors with BRCA1/2 mutations were developed to support decision-making on risk-adapted preventive options. These patient-oriented tools offer an important addition to existing specialist medical care in Germany. [ABSTRACT FROM AUTHOR]

This commentary accompanies publication of Kangas and Gross' phase model of emotion coping throughout the process of cancer care. While supporting the model, this commentary additionally highlights the already existing knowledge about the critical role of tumor stage, patient age, uncertainty and fear of recurrence, and gender differences. It is briefly described how all of these factors moderate and mediate the emotion coping process. [ABSTRACT FROM AUTHOR]

The article focuses on whether social support can be a buffer for cancer patients with anxiety and depression. It discusses the match-mismatch study of cancer patients who were made to fill the Psychosocial Screen for Cancer (PSSCAN) questionnaire, with deduction of demographic variables and medical record checks.

Purpose: It is critical for gastrointestinal cancer researchers and clinicians to have access to comprehensive, sensitive and simple-to-use symptom measures that allow them to understand and quantify the subjective patient experience. Development and validation of such scales requires training in psychometrics and occasionally uses technical jargon that can be difficult to penetrate. This review evaluates existing measures of gastrointestinal cancer symptoms, provides tool descriptions, and uses predefined, objective quality criteria to rate psychometric quality and facilitate tool choices for researchers and clinicians. Methods: MEDLINE, EMBASE, CINAHL, and PsycINFO databases were systematically reviewed for scales assessing gastrointestinal cancer and gastrointestinal cancer site-specific symptoms. Evaluation criteria were the following: breadth of domain coverage (content validity), high internal consistency ( α ≥ .80), sensitivity to change, and extent of validation. Results: In n = 36 validation studies, 26 gastrointestinal cancer symptom measures were identified. Of these, n = 13 tools met criteria for recommendation, and six in particular showed strong psychometric properties. The Functional Assessment of Cancer Therapy-Colorectal (FACT-C), European Organization for Research and Treatment of Cancer (EORTC) gastric cancer module (QLQ-STO22), FACT-Hepatobiliary (FACT-Hep), and EORTC oesophagus, oesophago-gastric junction and stomach module (QLQ OG-25) were identified as the most comprehensive and best validated scales for each of the major gastrointestinal cancer sites. The FACT-Colorectal Symptom Index (FCSI-9) and the National Comprehensive Cancer Network (NCCN) FACT-Hepatobiliary Symptom Index (FHSI-18) were specifically validated in patients with advanced colorectal and liver cancer and also demonstrated superior psychometric properties. Conclusions: Several comprehensive, well-validated scales exist to adequately assess gastrointestinal cancer site-specific symptoms. Specifically, gastrointestinal cancer submodules of the FACT quality of life questionnaire represent adequate tool choices in most instances and overall, were better validated than the respective EORTC tools. Further improvement of existing, highly rated measures is recommended. [ABSTRACT FROM AUTHOR]

Psychological factors may influence survival in breast cancer patients but results of previous research are inconclusive. This prospective population-based study tested whether depression predicts mortality in breast cancer patients. Routinely collected depression screening data were merged with electronically archived provincial cancer registry data and censored data from British Columbia Vital Statistics (extracted in December 2012). Cox proportional-hazards regression analyses were conducted to predict all-cause and breast cancer-specific mortality as a function of depression after controlling for biomedical confounders. Of 1,646 patients, 1,604 had breast cancer stages I-III and 42 had stage IV breast cancer. 176 (11.0 %) versus 28 (66.7 %) were deceased after a median follow-up of 76 months. In patients with curable breast cancer, depression predicted all-cause (HR = 1.54 (95 % CI 1.06-2.25); p = 0.024), but not breast cancer-specific mortality (HR = 1.51 (95 % CI 0.95-2.41); p = 0.084). No association was shown for metastatic disease. Stage-specific analyses demonstrated a 2-2.5-fold increase in breast cancer-specific and all-cause mortality in patients with stage I and II disease, but not in patients with stage III or IV breast cancer. In stage I breast cancer patients, age moderated effects of depression such that depressed younger patients diagnosed at age 45 (i.e., mean age −1SD) showed a ninefold (HR = 9.82 (95 % CI 2.26-42.68); p = 0.002) increase in all-cause mortality and depressed patients at 57 a 3.7-fold (HR = 3.69 (95 % CI 1.44-9.48); p = 0.007) increase, while no association was evident in older patients at age 69 (mean age +1SD). Depression is strongly associated with mortality in younger patients with early stage breast cancer. [ABSTRACT FROM AUTHOR]

Purpose: A diagnosis of breast cancer is often accompanied by the fear of loss of previous body image and attractiveness. Hence, many patients opt for reconstructive surgery. This study evaluated the effects of different types of reconstructive surgery after mastectomy on the functional and psychological adjustment of patients. Methods: In a cohort study, patients, who had breast reconstruction after mastectomy by means of four different allogenic or autologues techniques between 1999-2006 were retrospectively interviewed in person or by telephone. The questions addressed complication rates, physical complaints, functional impairments, body image outcomes, sexuality and patient satisfaction. Results: Of 139 patients, 89 (64.7 %) completed the survey. 32 (35.9 %) patients experienced one or more postoperative complications like seroma, hematoma, infections or necrosis. 16 (20 %) and 13 (16 %) patients reported strong and moderate adverse effects on sexuality, respectively. 62 (70 %) patients indicated that they were actively included in the decision making process. Patient ratings of good or bad medical advice were associated with complication rates ( p = 0.008). Patients, who evaluated their first preoperative counseling positively, reported higher consent rates when a re-reconstruction became necessary ( p ≤ 0.001). Satisfaction with the functional outcome after reconstruction and satisfaction with the cosmetic result was highly correlated ( p < 0.001). Conclusions: A significant association of patient satisfaction with postoperative complications and the decision for a re-reconstruction was demonstrated. Furthermore, our results emphasize the importance of detailed preoperative counseling for women's adjustment to reconstructive surgery. [ABSTRACT FROM AUTHOR]

Associations of characteristics of the cancer context (residence with the mother, age at mother's cancer diagnosis or death, recency of mother's diagnosis or death) and the familial cancer experience (engagement in caregiving, emotional support receipt and provision during the mother's illness) with psychological adjustment were studied cross-sectionally in women at high risk for breast cancer ( n = 147). Characteristics of the cancer context and engagement in caregiving for the mother's illness were not associated with psychological adjustment. Adult daughters who reported that they had provided emotional support to her mother ( p = .023) and who received emotional support themselves during the mother's illness ( p = .038) evidenced lower depressive symptoms. Furthermore, time since the mother's cancer diagnosis moderated effects of emotional support provision on intrusive thoughts such that daughters whose mothers were diagnosed with cancer no more than 5 years previously (but not more distally) reported lower intrusive thoughts when they provided emotional support to their mothers as compared to daughters who did not ( p = .003). Effects were not moderated by whether the mother had died from cancer. Although relationships of support receipt and support provision with depressive symptoms may also be attributed to trait-related behaviour linked to better psychological adjustment, the finding that intrusive thoughts were higher in daughters who were not emotionally supportive during their mother's recent cancer diagnosis is likely to be more context-specific. [ABSTRACT FROM AUTHOR]

Purpose: Perceived social support serves as a buffer against stress in cancer patients as well as in the healthy. However, not all individuals low in support necessarily want more support. We, therefore, tested a match-mismatch model (low versus high perceived support relative to low versus high desired support) with regard to its association with emotional distress. Methods: Participants included two large samples of n = 576 consecutively recruited, newly diagnosed cancer patients and n = 383 healthy controls. The hypothesized interaction effects of perceived and desired support and its impact on anxiety and depressive symptoms were tested via hierarchical linear regression. Results: Perceived social support and desire for support were orthogonal in cancer patients ( r = −0.03, p = 0.56). In accordance with the match-mismatch model, only those cancer patients with a high desire for support but who perceived low support exceeded cut-offs suggestive of anxiety and/or depressive disorder, whereas the other patient groups did not show clinical symptoms. Results for healthy controls were weaker. Conclusions: The findings support the hypothesized match-mismatch model suggesting that lack of social support is only associated with emotional distress when patients desire more support than they actually perceive as having. Perceived as well as desired social support are, therefore, relevant and non-overlapping constructs to be included in screening tools for emotional distress in order to heighten the utility of screening as a decision aid to guide psycho-oncological follow-up. [ABSTRACT FROM AUTHOR]

Purpose: The Hospital Anxiety and Depression Scale (HADS) is the most extensively validated scale for screening emotional distress in cancer patients. However, thresholds for clinical decision making vary widely across studies. A meta-analysis was conducted with the aim of identifying optimal, empirically derived cut-offs.Methods: PubMed, Embase, and PsycINFO databases were searched for studies that compared the HADS total and its subscale scores against a semi-structured or structured clinical interview as a reference standard with regard to its screening efficacy for any mental disorders and depressive disorders alone. Separate pooled analyses were conducted for single or two adjacent thresholds. A total of 28 studies (inter-rater agreement, κ = 0.86) were included.Results: The best thresholds for screening for mental disorders were 10 or 11 on the HADS total (sensitivity 0.80; specificity 0.74), 5 on the HADS depression subscale (sensitivity 0.84; specificity 0.50), and 7 or 8 on the HADS anxiety subscale (sensitivity 0.73; specificity 0.65). Respective thresholds for depression screening were 15 for the HADS total (sensitivity 0.87; specificity 0.88), 7 for the HADS depression subscale (sensitivity 0.86; specificity 0.81), and 10 or 11 for the HADS anxiety subscale (sensitivity 0.63; specificity 0.83).Conclusions: The HADS anxiety subscale performed worse than the total and the depression subscales for both indicators. Diagnostic accuracy varied widely by threshold but was consistently superior for depression screening than for screening of any mental disorder. [ABSTRACT FROM AUTHOR]

Individuals at increased risk for pancreatic cancer who undergo screening can experience psychological and emotional distress. The objective of this study is to determine whether individuals participating in a pancreatic cancer screening program experience disruptions in risk perception, cancer-related anxiety or emotional distress. A pretestposttest design was used to examine perceived risk and psychological functioning of individuals participating in a pancreatic cancer screening protocol. The screening protocol includes genetic counselling, transcutaneous abdominal ultrasound, magnetic resonance imaging, and blood collection and eligible participants included individuals with a family history of pancreatic cancer or BRCA2 mutation carriers. At baseline, participants ( n = 198) showed low to moderate levels of risk perception, pancreatic cancer-related anxiety, and general distress. Participants with familial pancreatic cancer (FPC) ( n = 131) endorsed higher risk perception of pancreatic cancer than the BRCA2 carriers ( n = 67) (perceived lifetime risk 42 vs. 15%), but did not differ on cancer worry or general distress prior to the first study appointment. From baseline to 3 months follow-up, no significant time or time by group interactions emerged on risk perception or general distress, but cancer worry decreased over time for the FPC group regardless of the number of affected relatives. Our findings indicate that participation in a pancreatic cancer screening program does not lead to a significant increase in risk perception, cancer worry, or general distress and that participants with high baseline levels of risk perception and distress may benefit from a more comprehensive risk assessment and psychological support. [ABSTRACT FROM AUTHOR]

Little is known about protective and vulnerability factors of long-term adjustment with BRCA1/2 carrier status. Specifically, the role of personal resources and perceptions of stigmatization have not been studied in the context of adjustment with hereditary breast cancer. The present study, therefore, explored associations of personal resources and stigma with cancer-specific anxiety in female BRCA1/2-carriers within a cross-sectional multi-center study. Participants ( n = 237) had received carrier notification between 4 months and 8 years before data collection and experienced a low level of cancer-related anxiety on average. Younger age was associated with both higher perceptions of stigma ( P = .002) and cancer-specific anxiety ( P = .034). Time since receiving test results, affected status, having undergone prophylactic mastectomy or prophylactic oophorectomy was not associated with demographic or psychological variables. Global self-esteem ( P = .002) and mastery ( P < .001) were associated with fewer intrusive and avoidant thoughts, whereas stigma was associated with more ( P < .001). Time since test result receipt did not moderate relations of self-esteem, mastery or stigma and cancer-specific anxiety. Cancer-specific anxiety did not vary as a function of time since carrier notification. Hence cancer-specific distress may be explained by past and ongoing experiences of cancer in the family rather than by the time point of carrier notification. Psychological interventions may benefit from specifically addressing feelings of stigmatization, and promoting self-worth and personal control in order to affect cancer-specific anxiety. [ABSTRACT FROM AUTHOR]

Screening for emotional distress is becoming increasingly common in cancer care. This systematic review examines the psychometric properties of the existing tools used to screen patients for emotional distress, with the goal of encouraging screening programs to use standardized tools that have strong psychometrics. Systematic searches of MEDLINE and PsycINFO databases for English-language studies in cancer patients were performed using a uniform set of key words (eg, depression, anxiety, screening, validation, and scale), and the retrieved studies were independently evaluated by two reviewers. Evaluation criteria included the number of validation studies, the number of participants, generalizability, reliability, the quality of the criterion measure, sensitivity, and specificity. The literature search yielded 106 validation studies that described a total of 33 screening measures. Many generic and cancer-specific scales satisfied a fairly high threshold of quality in terms of their psychometric properties and generalizability. Among the ultrashort measures (ie, those containing one to four items), the Combined Depression Questions performed best in patients receiving palliative care. Among the short measures (ie, those containing five to 20 items), the Center for Epidemiologic Studies–Depression Scale and the Hospital Anxiety and Depression Scale demonstrated adequate psychometric properties. Among the long measures (ie, those containing 21–50 items), the Beck Depression Inventory and the General Health Questionaire–28 met all evaluation criteria. The PsychoSocial Screen for Cancer, the Questionnaire on Stress in Cancer Patients–Revised, and the Rotterdam Symptom Checklist are long measures that can also be recommended for routine screening. In addition, other measures may be considered for specific indications or disease types. Some measures, particularly newly developed cancer-specific scales, require further validation against structured clinical interviews (the criterion standard for validation measures) before they can be recommended. [ABSTRACT FROM PUBLISHER]

Most research on adjustment of women undergoing genetic testing for breast cancer susceptibility has not followed women for more than 6 months after result receipt and has not evaluated curvilinear patterns in general and cancer-specific adjustment. This study’s primary goal was to examine the trajectory of psychological status in women at risk for breast and ovarian cancer prior to undergoing genetic testing through 1 year after BRCA1/2 result receipt. Women in the UCLA Familial Cancer Registry completed questionnaires assessing psychological status (i.e., depressive symptoms, negative and positive mood, anxiety, and cancer-related distress) prior to testing and at 1, 6, and 12 months after result receipt. Of 155 women tested, 117 were BRCA1/2− (96 uninformative negative and 21 true negative) and 38 were BRCA1/2+. Linear mixed model analyses revealed a consistent pattern in adjustment indicators, such that the groups did not differ at baseline, but mutation carriers endorsed significantly more depressive symptoms, negative mood, and cancer-specific distress relative to non-mutation carriers at 1 and 6 months after test result receipt (and less positive mood at 6 months only). At 12 months, negative and positive mood returned to baseline levels for mutation carriers, and depressive symptoms approached baseline. At 12 months, the groups differed significantly only on cancer-specific distress, owing to declining distress in non-carriers. Neither having a previous cancer diagnosis nor receiving a true negative versus uninformative negative result predicted reactions to genetic testing. Genetic testing prompted an increase in general and cancer-specific distress for BRCA1/2+ women, which remitted by 1 year after result receipt. [ABSTRACT FROM AUTHOR]

Background There is little knowledge as to whether the chronicity of a disease affects patients’ desire for participation. Aim To study whether participation preferences vary according to the type of disease. Design, participants and methods Data of 1393 patients from six trials with different medical conditions (hypertension, depression, breast cancer, schizophrenia, multiple sclerosis, minor traumas) were pooled and analysed, using multiple regression analysis controlling for socio-demographic variables. Results Younger age, better education as well as female gender accounted for a small but statistically significantly greater desire to participate. Patients suffering from multiple sclerosis (MS) exhibited significantly higher participation preferences than the other diagnostic groups. There were no major differences between the other diagnostic groups. Age, gender, education and diagnosis explained only 14% of the variance. Conclusions We found no clear differences between chronic and acute conditions. However, patients suffering from MS, a chronic condition, were clearly different from all other diagnostic groups. The reasons for this difference remain unclear. The predictive value of socio-demography and type of illness is low. [ABSTRACT FROM AUTHOR]

Familial cancer services have been developed in many countries in response to a rapidly evolving demand for genetic counseling and testing for breast cancer risk. This article presents a synthesis of the literature on international aspects of genetic counseling and testing and discusses similarities and differences in the provision of genetic counseling and testing, taking seven countries with well established familial cancer services as a case study (Australia, Canada, France, Germany, Netherlands, UK and US). Potential international differences are discussed in terms of: provider and patient attitudes to genetic counseling and genetic testing; utilization rates of genetic testing and prophylactic surgery; and the psychological impact of genetic testing for breast cancer risk. The comparative analyses of utilization rates and the psychological impact of testing indicate a wide range of variability in uptake rates and psychological outcomes, most likely reflecting sample variability and methodological differences in measurement. International comparison studies using controlled designs would be required to ascertain whether international differences exist, and to disentangle the differential role of clinical, individual and family context factors, on the one hand, and the cultural and health system-related factors unique to particular countries, on the other. [ABSTRACT FROM AUTHOR]

A letter to the editor and a reply are presented in response to the article "Rethinking recommendations for screening for depression in primary care," by B. D. Thombs and colleagues in the 2012 issue.