Women diagnosed with breast cancer undergoing a mastectomy often have the option to undergo breast reconstruction (BR). BR decisions are complex and have considerable impact. We developed a patient decision aid (pDA) to support patients’ BR decision-making. Here, we assess patients’ and physicians’ use of the BR pDA and their views on the barriers and facilitators for widespread implementation. Participants completed a questionnaire, and back-end data of the pDA was analyzed. Of 116 eligible patients, 113 patients accessed the BR pDA (median age: 50 years and 50

Background: Breast cancer (BC) patients who are treated with mastectomy are frequently offered immediate breast reconstruction. This study aimed to assess decisional conflict in patients considering immediate breast reconstruction, and to identify factors associated with clinically significant decisional conflict (CSDC). Methods: Baseline data of a multicenter randomized controlled trial evaluating the impact of an online decision aid for BC patients considering immediate breast reconstruction after mastectomy were analyzed. Participants completed questionnaires assessing sociodemographic and clinical characteristics, decisional conflict and other patient-reported outcomes related to decision-making such as breast reconstruction preference, knowledge, information resources used, preferred involvement in decision making, information coping style, and anxiety. Multivariable logistic regression analysis was performed to identify factors associated with CSDC (score > 37.5 on decisional conflict). Results: Of the 250 participants, 68% experienced CSDC. Patients with a slight preference for breast reconstruction (odds ratio (OR) = 6.19, p < .01), with no preference for or against breast reconstruction (OR =11.84, p < .01), and with a strong preference for no breast reconstruction (OR = 5.20, p < .05) were more likely to experience CSDC than patients with a strong preference for breast reconstruction. Furthermore, patients with more anxiety were more likely to experience CSDC (OR = 1.03, p = .01). Conclusion: A majority of BC patients who consider immediate breast reconstruction after mastectomy experience clinically significant decisional conflict. The findings emphasize the need for decision support, especially for patients who do not have a strong preference for breast reconstruction. (C) 2020 The Author(s). Published by Elsevier Ltd.

Abstract Background: We compared levels of psychological distress of newly diagnosed breast cancer patients who knew they were at heightened risk of carrying a BRCA1/2 mutation (HRBC) (eg, because of young age at diagnosis and/or a positive family history) with breast cancer patients who were not assessed for their risk (unknown risk breast cancer, or URBC). Methods: We administered the Hospital Anxiety and Depression Scale (HADS) to a sample of 238 Dutch HRBC patients and 165 Norwegian URBC patients within 3 weeks of breast cancer diagnosis, prior to primary surgery. We compared HADS scores between these groups, and identified variables associated with those scores. Results: The HRBC patients reported significantly more symptoms of depression than URBC patients (P < .001, effect size = .40). The percentage of women with a suspected or probable (HADS depression score ≥8) and a probable diagnosis of depression (HADS depression score ≥11) was 29% versus 12% (P = .001) and 15% versus 5% (P = .01) in the HRBC and URBC groups, respectively. There were no significant group differences in HADS anxiety scores. In the HRBC sample, having children and psychological problems in the year before breast cancer diagnosis were associated significantly with both depression and anxiety following the diagnosis of breast cancer. Conclusions: Shortly after diagnosis, high hereditary-risk breast cancer patients report significantly higher levels of clinically relevant depressive symptoms as compared to breast cancer patients not assessed for their risk. Screening for psychological distress among high-risk breast cancer patients could facilitate timely referral to appropriate psychosocial services.

As part of a larger, randomized controlled trial, we evaluated longitudinally the sexual functioning and relationship satisfaction of 69 partners of breast cancer (BC) survivors who received Internet-based cognitive behavioral therapy (CBT) for sexual dysfunction. The findings suggest that Internet-based CBT positively affects the partners' immediate post-CBT and longer-term overall sexual satisfaction, sexual intimacy, and sexual relationship satisfaction. No sustained changes in other areas of sexual functioning were observed. Our CBT program was focused primarily on the sexual health of the BC survivors. We recommend that future programs include more psychoeducational and behavioral elements targeted at the partners.

Most breast cancer patients undergoing mastectomy are candidates for breast reconstruction. Deciding about breast reconstruction is complex and the preference-sensitive nature of this decision requires an approach of shared decision making between patient and doctor. Women considering breast reconstruction have expressed a need for decision support. We developed an online patient decision aid (pDA) to support decision making in women considering immediate breast reconstruction. The primary aim of this study is to assess the impact of the pDA in reducing decisional conflict, and more generally, on the decision-making process and the decision quality. Additionally, we will investigate the pDA’s impact on health outcomes, explore predictors, and assess its cost-effectiveness. A multicenter, two-armed randomized controlled trial (1:1) will be conducted. Women with breast cancer or ductal carcinoma in situ who will undergo a mastectomy and are eligible for immediate breast reconstruction will be invited to participate. The intervention group will receive access to the online pDA, whereas the control group will receive a widely available free information leaflet on breast reconstruction. Participants will complete online questionnaires at: baseline (T0), 1 week after consultation with a plastic surgeon (T1), and 3 (T2) and 12 months (T3) after surgery. The primary outcome is decisional conflict. Secondary outcomes include other measures reflecting the decision-making process and decision quality (e.g., decision regret), patient-reported health outcomes (e.g., satisfaction with the breasts) and costs. This study will provide evidence about the impact of an online pDA for women who will undergo mastectomy and are deciding about breast reconstruction. It will contribute to the knowledge on how to optimally support women in making this difficult decision. This study is retrospectively registered at ClinicalTrials.gov ( NCT03791138 ).

Objectives: We evaluated factors predictive of the effect of internet-based cognitive behavioral therapy (CBT) in breast cancer survivors with a sexual dysfunction. Methods: Fifty-five women completed questionnaires assessing sexual functioning and distress at baseline and post-CBT. Results: Higher therapy compliance and better partner baseline sexual functioning predicted better post-CBT sexual functioning. Higher therapy compliance and higher partner relationship satisfaction predicted lower sexual distress. Therapy compliance, in turn, was predicted by active partner involvement in therapy and a stronger therapeutic relationship. Conclusions: To increase the effect of internet-based CBT, we recommend partner involvement in therapy and establishing a strong therapeutic relationship.

The study aim was to evaluate the long-term efficacy of Internet-based cognitive behavioral therapy (CBT) for sexual dysfunctions in 84 breast cancer survivors. The positive effects of the intervention on overall sexual functioning, sexual desire, sexual arousal, vaginal lubrication, discomfort during sex, sexual distress, and body image observed immediately posttreatment were maintained at three- and nine-month follow-ups. Although sexual pleasure decreased during follow-up, it did not return to baseline levels. Our findings provide evidence that Internet-based CBT has a sustained, positive effect on sexual functioning and body image of breast cancer survivors with a sexual dysfunction.

BackgroundRapid genetic counseling and testing (RGCT) in newly diagnosed high‐risk breast cancer (BC) patients may influence surgical treatment decisions. To successfully integrate RGCT in practice, knowledge of professionals’, and patients’ attitudes toward RGCT is essential.MethodsBetween 2008 and 2010, we performed a randomized clinical trial evaluating the impact of RGCT. Attitudes toward and experience with RGCT were assessed in 265 patients (at diagnosis, 6‐ and 12‐month follow‐up) and 29 medical professionals (before and after the recruitment period).ResultsAt 6‐month follow‐up, more patients who had been offered RGCT felt they had been actively involved in treatment decision‐making than patients who had been offered usual care (67% vs 48%, P = 0.06). Patients who received DNA‐test results before primary surgery reported more often that RGCT influenced treatment decisions than those who received results afterwards (P < 0.01). Eighty‐seven percent felt that genetic counseling and testing (GCT) should preferably take place between diagnosis and surgery. Most professionals (72%) agreed that RGCT should be routinely offered to eligible patients. Most patients (74%) and professionals (85%) considered surgeons the most appropriate source for referral.ConclusionsRGCT is viewed as helpful for newly diagnosed high‐risk BC patients in choosing their primary surgery and should be offered routinely by surgeons.

Purpose We evaluated the effect of Internet-based cognitive behavioral therapy (CBT) on sexual functioning and relationship intimacy (primary outcomes) and body image, menopausal symptoms, marital functioning, psychological distress, and health-related quality of life (secondary outcomes) in breast cancer survivors (BCSs) with a DSM-IV diagnosis of a sexual dysfunction. Patients and Methods We randomly assigned 169 BCSs to either Internet-based CBT or a waiting-list control group. The CBT consisted of weekly therapist-guided sessions, with a maximum duration of 24 weeks. Self-report questionnaires were completed by the intervention group at baseline (T0), midtherapy (T1), and post-therapy (T2) and at equivalent times by the control group. We used a mixed-effect modeling approach to compare the groups over time. Results Compared with the control group, the intervention group showed a significant improvement over time in overall sexual functioning (effect size for T2 [EST2] = .43; P = .031), which was reflected in an increase in sexual desire (EST1 = .48 and EST2 = .72; P < .001), sexual arousal (EST2 = .50; P = .008), and vaginal lubrication (EST2 = .46; P = .013). The intervention group reported more improvement over time in sexual pleasure (EST1 = .32 and EST2 = .62; P = .001), less discomfort during sex (EST1 = .49 and EST2 = .66; P = .001), and less sexual distress (EST2 = .59; P = .002) compared with the control group. The intervention group reported greater improvement in body image (EST2 = .45; P = .009) and fewer menopausal symptoms (EST1 = .39; P = .007) than the control group. No significant effects were observed for orgasmic function, sexual satisfaction, intercourse frequency, relationship intimacy, marital functioning, psychological distress, or health-related quality of life. Conclusion Internet-based CBT has salutary effects on sexual functioning, body image, and menopausal symptoms in BCSs with a sexual dysfunction.

Background: Many women develop sexual problems after breast cancer (BC) treatment. Little is known about BC survivors with a Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV) sexual dysfunction and their partners, and the factors associated with their sexual functioning. Aim: To evaluate (i) patient-related and clinical factors associated with (a) specific DSM-IV sexual dysfunctions and (b) level of sexual functioning and sexual distress as reported by BC survivors and (ii) the association between the sexual functioning of BC survivors and that of their partners. Methods: We analyzed baseline data from a study of the efficacy of online cognitive-behavioral therapy for sexual dysfunction in BC survivors. Outcomes: Women completed self-report questionnaires assessing sexual functioning, sexual distress, relationship intimacy, marital functioning, menopausal symptoms, body image, and psychological distress. Their partners completed questionnaires assessing sexual functioning. Results: The study included 169 BC survivors and 67 partners. The most prevalent female sexual dysfunctions were hypoactive sexual desire disorder (HSDD; 83%), sexual arousal disorder (40%), and dyspareunia (33%). Endocrine therapy was associated with HSDD (P = .003), and immunotherapy was associated with dyspareunia (P = .009). Older age was associated with lower sexual distress (P < .001). Depressive symptoms were highest in women with sexual arousal disorder (P = .004). An indication for erectile disorder was present in two thirds of partners. Lower overall partner sexual satisfaction was associated with lower overall BC survivor sexual functioning (P = .001), lower female arousal (P = .002), and lower female sexual satisfaction (P = .001). Poorer male erectile function was related to higher female sexual pain (P = .006). Partners of women who underwent breast reconstruction reported marginally significantly better orgasmic functioning (P = .012) and overall sexual functioning (P = .015) than partners of women who had undergone breast-conserving treatment. Clinical Implications: BC survivors and their partners experience sexual problems after BC treatment. This suggests that not only the BC survivor but also her partner could benefit from sexual counseling. Strengths and Limitations: This is the first study focusing on BC survivors with a DSM-IV sexual dysfunction and their partners. The results cannot necessarily be generalized to women experiencing milder sexual problems or who have no interest in receiving sexual counseling. Conclusion: Endocrine therapy and immunotherapy are relevant risk factors for HSDD and dyspareunia in BC survivors. The sexual functioning of women and their partners is affected, underscoring the importance of involving both partners in sexual counseling after BC treatment. Copyright (C) 2017, International Society for Sexual Medicine. Published by Elsevier Inc. All rights reserved.

PURPOSE:Female breast cancer patients carrying a BRCA1/2 mutation have an increased risk of second primary breast cancer. Rapid genetic counseling and testing (RGCT) before surgery may influence choice of primary surgical treatment. In this article, we report on the psychosocial impact of RGCT.METHODS:Newly diagnosed breast cancer patients at risk for carrying a BRCA1/2 mutation were randomized to an intervention group (offer of RGCT) or a usual care control group (ratio 2:1). Psychosocial impact and quality of life were assessed with the Impact of Events Scale, Hospital Anxiety and Depression Scale, Cancer Worry Scale, and the EORTC QLQ-C30 and QLQ-BR23. Assessments took place at study entry and at 6- and 12-month follow-up visits.RESULTS:Between 2008 and 2010, 265 patients were recruited into the study. Completeness of follow-up data was more than 90%. Of the 178 women in the intervention group, 177 had genetic counseling, of whom 71 (40%) had rapid DNA testing and 59 (33%) received test results before surgery. Intention-to-treat and per-protocol analyses showed no statistically significant differences between groups over time in any of the psychosocial outcomes.CONCLUSIONS:In this study, RGCT in newly diagnosed breast cancer patients did not have any measurable adverse psychosocial effects.

BACKGROUND:Sexual dysfunction is a prevalent, long-term complication of breast cancer and its treatment and can be treated effectively with face-to-face sexual counselling. However, relatively few women actually opt for face-to-face sex therapy, with many women indicating that it is too confronting. Internet-based interventions might be a less threatening and more acceptable approach, because of the convenience, accessibility and privacy it provides. Recent studies have demonstrated the efficacy of internet-based programs for improving sexual functioning in the general population. The objective of the current study is to investigate the efficacy of an internet-based cognitive behavioral therapy (CBT) program in alleviating problems with sexuality and intimacy in women who have been treated for breast cancer.METHODS/DESIGN:In a multicenter, randomized controlled trial we are evaluating the efficacy of an internet-based CBT program in reducing problems with sexuality and intimacy in breast cancer survivors. Secondary outcomes include body image, marital functioning, psychological distress, menopausal symptoms, and health-related quality of life. We will recruit 160 breast cancer survivors (aged 18-65 years) with a formal DSM-IV diagnosis of sexual dysfunction from general and academic hospitals in the Netherlands. Women are randomized to either an intervention or waiting-list control group. Self-report questionnaires are completed by the intervention group at baseline (T0), ten weeks after start of therapy (T1), post-treatment (T2), 3 months post-treatment (T3), and 9 months post-treatment (T4). The control group completes questionnaires at T0, T1 and T2.DISCUSSION:There is a need for accessible and effective interventions for the treatment of sexual dysfunctions in breast cancer survivors. This study will provide evidence about the efficacy of an internet-based approach to delivering a CBT intervention targeted specifically at these sexual health issues. If proven to be effective, internet-based CBT for problems with sexuality and intimacy will be a welcome addition to the care offered to breast cancer survivors. Hopefully this therapy will lower the barrier to seeking help for these problems, resulting in improved quality of life after breast cancer.TRIAL REGISTRATION:The study is registered at ClinicalTrials.gov (NCT02091765).

PURPOSE:This study evaluated the efficacy of a cancer genetics–specific questionnaire in facilitating communication about, awareness of, and management of psychosocial problems, as well as in lowering distress levels.METHODS:Individuals referred to genetic counseling for cancer at two family cancer clinics in The Netherlands were randomly assigned to an intervention or a control group. All participants completed the psychosocial questionnaire before counseling. In the intervention group, the counselors received the results of this questionnaire before the counseling session. All sessions were audiotaped for content analysis. Primary outcomes were the frequency with which psychosocial problems were discussed, the genetic counselors’ awareness of these problems, and their management. Secondary outcomes included cancer worries and psychological distress, duration and dynamics of the counseling, and satisfaction.RESULTS:The frequency with which psychosocial problems were discussed with 246 participating counselees was significantly higher in the intervention group (n = 127) than in the control group (n =119; P = .004), as was the counselors’ awareness of psychosocial problems regarding hereditary predisposition (P < .001), living with cancer (P = .01), and general emotions (P < .001). Counselors initiated more discussion of psychosocial problems in the intervention group (P < .001), without affecting the length of the counseling session. No significant differences were found on management (P = .19). The intervention group reported significantly lower levels of cancer worries (p = .005) and distress (p = .02) after counseling.CONCLUSION:The routine assessment of psychosocial problems by questionnaire facilitates genetic counselors’ recognition and discussion of their clients’ psychosocial problems and reduces clients’ distress levels.

Approximately 25% of individuals undergoing genetic counseling for cancer experiences clinically relevant levels of distress, anxiety and/or depression. However, these general psychological outcomes that are used in many studies do not provide detailed information on the specific psychosocial problems experienced by counselees. The aim of this review was to investigate the specific psychosocial issues encountered by individuals undergoing genetic counseling for cancer, and to identify overarching themes across these issues. A literature search was performed, using four electronic databases (PubMed, PsychInfo, CINAHL and Embase). Papers published between January 2000 and January 2013 were selected using combinations, and related indexing terms of the keywords: 'genetic counseling', 'psychology' and 'cancer'. In total, 25 articles met our inclusion criteria. We identified the specific issues addressed by these papers, and used meta-ethnography to identify the following six overarching themes: coping with cancer risk, practical issues, family issues, children-related issues, living with cancer, and emotions. A large overlap in the specific issues and themes was found between these studies, suggesting that research on specific psychosocial problems within genetic counseling has reached a point of saturation. As a next step, efforts should be made to detect and monitor these problems of counselees at an early stage within the genetic counseling process.

BACKGROUND:Individuals with a personal or family history of cancer, can opt for genetic counseling and DNA-testing. Approximately 25% of these individuals experience clinically relevant levels of psychosocial distress, depression and/or anxiety after counseling. These problems are frequently left undetected by genetic counselors. The aim of this study is to evaluate the efficacy of a cancer genetics-specific screening questionnaire for psychosocial problems, the 'Psychosocial Aspects of Hereditary Cancer (PAHC) questionnaire' together with the Distress Thermometer, in: (1) facilitating personalized counselor-counselee communication; (2) increasing counselors' awareness of their counselees' psychosocial problems; and (3) facilitating the management of psychosocial problems during and after genetic counseling.METHODS:This multicenter, randomized controlled trial will include 264 individuals undergoing cancer genetic counseling in two family cancer clinics in the Netherlands. Participants will be randomized to either: (1) an intervention group that completes the PAHC questionnaire, the results of which are made available to the genetic counselor prior to the counseling session; or (2) a control group that completes the PAHC questionnaire, but without feedback being given to the genetic counselor. The genetic counseling sessions will be audiotaped for content analysis. Additionally, study participants will be asked to complete questionnaires at baseline, three weeks after the initial counseling session, and four months after a telephone follow-up counseling session. The genetic counselors will be asked to complete questionnaires at the start of and at completion of the study, as well as a checklist directly after each counseling session. The questionnaires/checklists of the study include items on communication during genetic counseling, counselor awareness of their clients' psychosocial problems, the (perceived) need for professional psychosocial support, cancer worries, general distress, specific psychosocial problems, satisfaction with care received, and experience using the PAHC questionnaire.DISCUSSION:This study will provide empirical evidence regarding the efficacy of a relatively brief psychosocial screening questionnaire in terms of facilitating personalized communication, increasing counselors' awareness, and optimizing management of psychosocial problems in the cancer genetic counseling setting.TRIAL REGISTRATION:This study is registered at the Netherlands Trial Register (NTR3205) and ClinicalTrials.gov (NCT01562431).