Patient Satisfaction and Nipple-Areola Sensitivity After Bilateral Prophylactic Mastectomy and Immediate Implant Breast Reconstruction in a High Breast Cancer Risk Population: Nipple-Sparing Mastectomy Versus Skin-Sparing Mastectomy.

BACKGROUND: Prophylactic skin-sparing mastectomy (SSM) and nipple-sparing mastectomy (NSM) both are associated with major risk reduction in women with high breast cancer risk. Skin-sparing mastectomy followed by nipple-areola complex (NAC) reconstruction is standard of care, but NSM is increasingly being performed. Preservation of the NAC in NSM may increase patient satisfaction. Therefore, we measured NAC sensitivity after NSM and compared patient satisfaction as well as body image after SSM with NSM. METHODS: Women who underwent prophylactic bilateral SSM or NSM and immediate implant breast reconstruction between 2002 and 2012 were eligible. Patient satisfaction was assessed using the Breast-Q reconstruction questionnaire, body image using Hopwood's body image scale (BIS), and satisfaction with the (reconstructed) NAC using a study-specific questionnaire. In the NSM group, NAC sensitivity was assessed using Semmes Weinstein monofilaments with a 5-point scale and compared with NAC sensitivity in a nonoperated control group. RESULTS: The SSM group comprised 25 women (50 SSMs) and the NSM group 20 women (39 NSMs). Median follow-up was 65 months in the SSM group compared with 27 months in the NSM group (P < 0.01). In univariable analyses, Breast-Q scores were favorable in the SSM group compared with the NSM group with trends for higher "satisfaction with breasts" (66.2 vs 56.6; P = 0.06) and "satisfaction with outcome" (76.1 vs 61.5; P = 0.09). Mean BIS score of 7.1/30 in the SSM group and 9.3/30 in the NSM group (P = 0.35). Adjusted for follow-up, there were no significant differences in Breast-Q scores, nor in BIS scores. Interestingly, satisfaction with the (reconstructed) NAC was similar after SSM and NSM. Nipple-areola complex sensitivity was lower in the NSM group (mean score, 1.9; 95% confidence interval, 1.5-2.3) compared with the control group (mean score, 4.7; 95% confidence interval, 4.6-4.9; P < 0.01). CONCLUSIONS: Breast-Q scores regarding satisfaction with breasts and overall outcome were in favor of the SSM group. Residual NAC sensitivity after NSM was low. This suggests that SSM followed by NAC reconstruction is a balanced alternative to NSM. We observed no significant differences in body image and NAC-specific satisfaction between the NSM and SSM groups.

Impact of delayed implant and DIEP flap breast reconstruction on body image and sexual satisfaction: a prospective follow-up study.

OBJECTIVE: Prospective studies regarding the psychosexual impact after different types of breast reconstruction (BR) are scarce. The impact of either implant or deep inferior epigastric artery perforator (DIEP) flap BR on body image and sexual relationship satisfaction was investigated in time. METHODS: At baseline, 98 women opting for delayed implant or DIEP flap BR after mastectomy for breast cancer completed a survey. The majority was followed up at 6 months (96%) and 20 months (86%) postoperatively. Questionnaires included the body image scale, Dutch Relationship Questionnaire, Short Form - 36 Health Survey and the Impact of Event Scale. RESULTS: Mixed modeling analyses indicated that preoperative body image improved significantly after 20 months (p < 0.001), and there was no statistically significant difference between the two types of BR. A better body image was related to a better general mental health (p = 0.02), less cancer distress (p < 0.001) and a higher partner relationship satisfaction (p < 0.001). Sexual relationship satisfaction also increased after 20 months (p = 0.01), and it was positively related to higher partner relationship satisfaction but negatively affected by hormonal therapy. CONCLUSIONS: Body image and sexual relationship satisfaction significantly improved after BR, and this was not related to the BR type. Psychosexual consequences from previous cancer treatment may interfere. Lower general mental health, higher cancer distress, less partner relationship satisfaction or receiving hormonal therapy can negatively affect body image or sexual relationship satisfaction.

Revised guidelines for the clinical management of Lynch syndrome (HNPCC): recommendations by a group of European experts.

Lynch syndrome (LS) is characterised by the development of colorectal cancer, endometrial cancer and various other cancers, and is caused by a mutation in one of the mismatch repair genes: MLH1, MSH2, MSH6 or PMS2. In 2007, a group of European experts (the Mallorca group) published guidelines for the clinical management of LS. Since then substantial new information has become available necessitating an update of the guidelines. In 2011 and 2012 workshops were organised in Palma de Mallorca. A total of 35 specialists from 13 countries participated in the meetings. The first step was to formulate important clinical questions. Then a systematic literature search was performed using the Pubmed database and manual searches of relevant articles. During the workshops the outcome of the literature search was discussed in detail. The guidelines described in this paper may be helpful for the appropriate management of families with LS. Prospective controlled studies should be undertaken to improve further the care of these families.

The short-term psychological impact of complications after breast reconstruction.

OBJECTIVES: Few studies have focused on the psychological impact of postoperative complications after breast reconstruction (BR). As postoperative complications after BR usually lead to a prolonged recovery time and sometimes require additional surgery, the short-term impact on distress was investigated. METHODS: Pre- and postoperatively, psychological questionnaires were sent to 152 women who underwent either implant BR or deep inferior epigastric artery perforator flap BR (DIEPBR). In addition, patients and physicians' reports of postoperative complications during the first 4-6 weeks after BR were scored. The course of anxiety, depression and cancer-specific distress, and the effect of complications on distress were investigated. RESULTS: Implant BR patients reported decreased anxiety after surgery, and both groups reported reduced cancer-specific distress after surgery. However, depressive symptoms tended to increase after DIEPBR. If complications occurred, both reconstruction groups reported increased depressive and anxiety symptoms, and DIEPBR patients even had depressive symptoms of clinical concern. A significant number of patients with complications reported alarming levels of distress. Timing and laterality were not significantly correlated with distress. CONCLUSIONS: Complications after BR have a significant impact on emotional well-being shortly after surgery. As distress affects quality of life and health outcomes, it is of great importance to offer psychological support to these patients. Distress can be evaluated by monitoring the emotional impact of BR during post-surgery consults, or with the standard use of short psychological questionnaires that patients can complete at home.

Quality of life after surgery for colon cancer in patients with Lynch syndrome: partial versus subtotal colectomy.

BACKGROUND: Lynch syndrome is a disorder caused by mismatch repair gene mutations. Mutation carriers have a high risk of developing colorectal cancer. In patients with Lynch syndrome in whom colon cancer has been diagnosed, in general, subtotal colectomy instead of partial colectomy is recommended because of the substantial risk of metachronous colorectal cancer. However, the effect of more extensive surgery on quality of life and functional outcome is unknown. OBJECTIVE: The aim of this study was to investigate quality of life and functional outcome in patients with Lynch syndrome after partial colectomy and subtotal colectomy. DESIGN: This is a nationwide cross-sectional study in the Netherlands. SETTINGS: Two quality-of-life questionnaires (Short Form-36 and The European Organization for Research and Treatment of Cancer Colorectal Cancer-specific Quality of Life Questionnaire Module) and a functional outcome questionnaire (Colorectal Functional Outcome) were used. PATIENTS: Patients with Lynch syndrome who underwent surgery for colon cancer were included. MAIN OUTCOME MEASURES: The primary outcomes measured were quality of life and functional outcome. RESULTS: Questionnaires were sent to 192 patients with Lynch syndrome who underwent surgery for colorectal cancer. A total of 136 patients returned the questionnaire (response rate, 71%). Eighteen patients with rectal cancer, 9 patients with a permanent ileostomy, and 5 patients with an IPAA were excluded. Fifty-one patients underwent partial colectomy, and 53 underwent subtotal colectomy. None of the scales of the Short Form-36 survey showed a significant difference. Analysis of the Colorectal Functional Outcome questionnaire revealed that, after subtotal colectomy, patients have a significantly higher stool frequency (p ≤ 0.01) and a significantly higher score on stool-related aspects (p = 0.06) and social impact (p = 0.03). The European Organization for Research and Treatment of Cancer Colorectal Cancer-specific Quality of Life Questionnaire Module presented more problems with defecation after subtotal colectomy (p ≤ 0.01). LIMITATIONS: Certain selection bias cannot be ruled out. CONCLUSIONS: Although functional outcome is worse after subtotal colectomy than after partial colectomy, generic quality of life does not differ after the 2 types of surgery in Lynch syndrome. When discussing the options for surgery with the patient, all advantages and disadvantages of both surgical procedures, including quality of life and functional outcome, should be discussed.

Patients' and surgeons' experiences after failed breast reconstruction: A qualitative study.

BACKGROUND: The goal of postmastectomy breast reconstruction (BR) is to improve the quality of life of patients. However, complications following autologous BR (A-BR) and implant-based BR (I-BR) occur frequently and may even lead to BR-failure, which can be a distressing event for both patients and surgeons. The current study, therefore, examines the experiences of both patients and surgeons after a BR-failure. METHODS: Patients with a failed BR from a large multicenter cohort study and participating plastic surgeons were invited to participate in semi-structured interviews focusing on their experiences. The interviews were analyzed according to the principles of grounded theory. RESULTS: Fourteen patients with a failed I-BR, four patients with a failed A-BR, and four plastic surgeons were participated. Three main categories emerged from the data: personal experiences with BR-failure, the motives for a redo of a failed BR, and patient-surgeon communication. Patients would like to be treated with more attention to their personal feelings and lives, instead of being approached from a purely medical-technical perspective. Surgeons may experience feelings of guilt leading to the strong urge to fix the failed BR, whereas patients may be less inclined to undergo additional operations. Patients want to know what the choice for a particular type of BR would mean to their personal lives. The impact of I-BR-failure may be underestimated and requires the same degree of intensive aftercare and attention. CONCLUSIONS: Implementing the recommendations of this study in clinical practice may facilitate improvements in how both patients and surgeons cope with a BR-failure.

Long-term outcomes of bilateral direct-to-implant breast reconstruction in women at high breast cancer risk.

INTRODUCTION: Challenges of direct-to-implant breast reconstruction (BR) are to achieve sufficient implant coverage and lower pole projection. We assessed reoperation rates, long-term patient satisfaction and aesthetic outcome after direct-to-implant BR without acellular dermal matrix (ADM) in women with high breast cancer risk. METHODS: Women who underwent bilateral skin or nipple-sparing mastectomy and immediate direct-to-implant BR between 1994 and 2006 completed a survey on reoperations and the Breast-Q Reconstruction questionnaire. Photographs taken during follow-up were rated for long-term aesthetic outcome (scale 1-10) by five plastic surgeons. Outcomes were compared between women who never underwent unanticipated reoperations after immediate BR and women who underwent one or more reoperations, adjusted for potential confounders using multivariable linear regression. RESULTS: Of 143 women, 70 (49%) were never reoperated and 73 (51%) had undergone reoperations. Median follow-up was 12 years in both groups (range 7-17 and 6-19 years, respectively). Baseline characteristics were comparable except for history of prophylactic oophorectomy with 81% in the no-reoperations group versus 66% in the reoperated group (p = .03). Breast-Q scores were 59.7 ± 17.3 versus 58.0 ± 17.8 (p = .67) for 'satisfaction with breasts' and 71.1 ± 20.3 versus 68.1 ± 22.9 (p = .47) for 'satisfaction with outcome' in the no-reoperation versus reoperation group, respectively. Aesthetic outcome was scored 5.8 ± 1.1 in the no-reoperation group versus 5.3 ± 1.3 in the reoperation group (p = .01). CONCLUSIONS: The single-stage intent did not prevent unanticipated surgical reinterventions in 51% of the patients. Long-term patient satisfaction was reasonable and not affected by reoperations. Aesthetic outcome, however, was only poor to reasonable and scores were significantly lower in the reoperated group.

Most women recover from psychological distress after postoperative complications following implant or DIEP flap breast reconstruction: A prospective long-term follow-up study.

BACKGROUND: Substantial complication rates after postmastectomy breast reconstruction (BR) in breast cancer patients have been reported. Few studies have reported on the resulting psychological distress (PD) and satisfaction with the aesthetic result in relation to postoperative complications after completion of implant or DIEP flap BR. The present study investigated whether women were able to recover from complication related distress in the long term. METHODS: PD was prospectively measured using questionnaires regarding anxiety, depression and cancer distress. Eligible patients completed questionnaires before BR (T0, n = 144), after one month (T1, n = 139) and after completion of BR, approximately 21 months after initial reconstructive surgery (T2, n = 119). Satisfaction with the aesthetic result was assessed 21 months after BR. Data concerning complications, subsequent additional surgery and total reconstruction failure up to T2 were collected from the medical records. Analyses were performed using multi-level regression analyses correcting for age. RESULTS: One or more complications occurred in 61 patients (42%) and 50 women required subsequent surgery (35%). In time, mean PD significantly declined towards baseline scores independent of complications. However, a total reconstruction failure (n = 10) was significantly associated with a large temporary increase in depression scores. After additional surgery due to complications patients were less satisfied with aesthetic outcome, although patient satisfaction was independent of PD. CONCLUSIONS: PD outcomes generally declined to normal levels after completion of the entire BR course. Patients experiencing a total reconstruction failure reported more depression after this loss, but in the long term recovered to the same level as women without complications. These findings indicate that women generally can cope efficiently with these serious adverse events, even if they were less satisfied with the aesthetic result.

Body image issues after bilateral prophylactic mastectomy with breast reconstruction in healthy women at risk for hereditary breast cancer.

The outcome of bilateral prophylactic mastectomy with breast reconstruction (BPM-IBR) in healthy BRCA1/2 mutation carriers can be potentially burdensome for body image and the intimate relationship. Therefore, in the current analysis the impact on body image, sexual and partner relationship satisfaction was prospectively investigated in women opting for BPM-IBR as well as cancer distress and general quality of life. Healthy women undergoing BPM-IBR completed questionnaires preoperatively (T0, n = 48), at 6 months (T1, n = 44) and after finishing breast reconstruction (median 21 months, range 12-35) (T2, n = 36). With multi-level regression analyses the course of outcome variables was investigated and a statistically significant change in body image and/or sexual and partner relationship satisfaction was predicted by baseline covariates. Body image significantly decreased at T1. At T2 sexual relationship satisfaction and body image tended to be lower compared to baseline. The overall partner relationship satisfaction did not significantly change. At T2, 37 % of the women reported that their breasts felt unpleasantly, 29 % was not satisfied with their breast appearance and 21 % felt embarrassed for their naked body. Most body image issues remained unchanged in 30 % of the women. A negative body image was predicted by high preoperative cancer distress. BPM-IBR was associated with adverse impact on body image in a substantial subgroup, but satisfaction with the overall sexual and partner relationship did not significantly change in time. The psychosocial impact of BPM-IBR in unaffected women should not be underestimated. Psychological support should ideally be integrated both before and after BPM-IBR.

Value-based healthcare in Lynch syndrome.

Lynch syndrome (LS), one of the most frequent forms of hereditary colorectal cancer (CRC), is caused by a defect in one of the mismatch repair (MMR) genes. Carriers of MMR defects have a strongly increased risk of developing CRC and endometrial cancer. Over the last few years, value-based healthcare has been introduced as an approach to the cost-effective delivery of measurable patient value over complete cycles of care. This requires all involved stakeholders to formulate and validate 'patient value' for Lynch syndrome, as well as to identify targets and associated costs. The aim of this study was to develop a value-based care model for Lynch syndrome that can determine patient value and associated costs, and to design a coordinated care pathway from existing guidelines. All specialists in our hospital involved in the management of LS patients evaluated the care delivered to these patients at their department and formulated outcome measures relevant to patient value. Patients were then invited to complete a questionnaire that assessed the importance of these measures on a scale of 1-10. Six high-value outcomes were identified: (1) prevention of cancer or detection of early stage cancer (2) rapid results from MMR gene mutation testing (3) rapid investigation of the colon and uterus (4) no/little pain during colonoscopy and gynaecologic examination/biopsy (5) the offer of psychological help and (6) registration with the Dutch Lynch syndrome registry. A total of 38 (59 %) out of 62 patients completed the questionnaire. The relevance of all outcomes was confirmed by the patients and mean scores varied from 7.2 to 9.9. Patients underscored the relevance of both proper patient education and the efficiency of surveillance during their care cycle. Value-based care delivery for Lynch syndrome includes the implementation of six parameters related to prevention and early detection of cancer, a short cycle time and registration to ensure continuation of care. Estimated costs are 3320 for the first cycle of care ( 3550 including gynaecologic surveillance) and approximately 720 per subsequent annual cycle ( 950 including gynaecologic surveillance).

Surveillance for hereditary cancer: does the benefit outweigh the psychological burden?--A systematic review.

Individuals at risk for developing hereditary cancer are offered surveillance in order to improve the prognosis. An important question is whether the benefit of surveillance outweighs the psychological burden. In this review, we evaluated all studies that investigated psychological distress and the quality of life in individuals under surveillance for hereditary cancer of the breast, ovarian, prostate, pancreas, colorectum, melanoma, and various rare syndromes such as familial adenomatous polyposis, Li-Fraumeni and Peutz-Jeghers syndrome. Thirty-two studies were identified. Surveillance for most hereditary cancers was associated with good psychological outcomes. However, surveillance of individuals at high risk for developing multiple tumors appeared to be associated with increased distress and a lower quality of life. Common factors associated with worse psychological outcomes included a personal history of cancer, female gender, having a first degree relative with cancer, negative illness perceptions and coping style. The use of a simple screening tool to identify distressed individuals is recommended.

Information-seeking behaviour and coping style of women opting for either implant or DIEP-flap breast reconstruction.

BACKGROUND: High satisfaction rates have been reported after autologous breast reconstruction. Yet, most mastectomy patients receive implant reconstructions (ImBR). Independent and active decision makers have shown mainly to choose for autologous reconstructions, such as the Deep inferior epigastric perforator (DIEP) flap (DiepBR). To further explore the decision making to opt for either ImBR or DiepBR, we investigated patient knowledge, informational resources used, effect of plastic surgeons' advice, coping style and personal independence. METHODS: A total of 153 women, who were planned for DiepBR or ImBR preoperatively, completed a study-specific and standardised validated psychological questionnaire. Analyses were aimed at information-seeking behaviour, personal independence and coping styles associated with autonomous decision making regarding reconstruction. RESULTS: DiepBR women reported different informational resources to be very important and they were more active information seekers, compared with ImBR women. ImBR women found their physician's advice to be more important in their decision making than DiepBR women. Actively seeking for information regarding BR was positively correlated with active coping, sensitivity to others and the decision for DIEP-flap BR. CONCLUSIONS: Women opting for DIEP-flap BR were more active and independent in their decision making regarding the type of BR. Women opting for implant BR seemed less well-informed and more dependent on their physician in their decision compared with women opting for DIEP-flap BR. To undergo a complex type of BR, active and independent information seeking may be required. However, clinical and logistic characteristics need to be considered, as some patients were limited in their reconstruction options.

Women's motives to opt for either implant or DIEP-flap breast reconstruction.

OBJECTIVE: Understanding women's motives concerning breast reconstructive surgery will contribute to a better counselling and care for the increasing number of women choosing post-mastectomy breast reconstruction (BR). METHODS: We interviewed 31 women who opted for implant or deep inferior epigastric perforator (DIEP)-flap BR after therapeutic or prophylactic mastectomy. Motives for BR in general and for the selected type of BR were investigated following a phenomenological qualitative research approach. RESULTS: Women opting for implant BR were concerned with surgery-related issues, such as recovery time, number of scars and impact of surgery. They wanted to return to their daily life and restore their body image as soon as possible. Patients choosing DIEP-flap BR were more focussed on regaining a natural breast and wanted to benefit from the advantages of autologous tissue. Women scheduled for prophylactic mastectomy saw BR as an integral part of their treatment. Patients opting for BR after therapeutic mastectomy wanted to regain a complete body image with BR. CONCLUSIONS: Patients' motives for implant BR were primarily related to surgical issues, whereas women who chose DIEP-flap BR especially focussed on regaining a breast that resembles their own lost breast as well as possible. Clinical variables (such as therapeutic or prophylactic mastectomy, breast irradiation, and waiting lists) need to be taken into account when considering a certain type of BR, as these can be of great importance in the decision-making process.

[Reduction in chronic pelvic pain in women with less catastrophizing pain] / Vermindering van chronische buikpijn bij vrouwen die minder catastrofaal denken.

OBJECTIVE: To evaluate the course of chronic pelvic pain (CPP) symptoms in women and to explore factors associated with changes in pain intensity and adjustment to pain in the long term. DESIGN: Follow-up study. METHOD: All women who had visited a Chronic Pelvic Pain team of a university hospital in the past were invited to participate. All completed a set of questionnaires at their first visit and follow-up. RESULTS: Of the 131 women who met the inclusion criteria, 84 (64%) consented to participation in this follow-up study. After a mean follow-up period of 3 years, significant changes were found as regards a reduction in pain intensity, an improvement in adjustment to pain (i.e., physical well-being and depressive symptoms), a reduction in catastrophizing pain and an increase in perceived pain control. Neither sociodemographic, clinical nor pain-related variables were associated with these changes. Pain appraisals and pain coping strategies at baseline did not predict changes from baseline in pain intensity. A reduction in catastrophizing pain, however, was associated with a reduction in pain intensity and adjustment to pain, especially as regards physical well-being and depressive symptoms. CONCLUSION: After 3 years' follow-up, an improvement in pain intensity was observed in women with CPP, and this was not associated with baseline pain appraisals and coping strategies. A reduction in catastrophizing pain was related to better outcome in the long term.

High satisfaction rates in women after DIEP flap breast reconstruction.

BACKGROUND: Breast reconstruction (BR) is aimed at improving quality of life (QoL) after mastectomy. Patient satisfaction is an important indicator to evaluate the success of BR. This study explored patient satisfaction and its determinants in women undergoing deep inferior epigastric artery perforator (DIEP) flap BR as well as the impact of the procedure on body image, sexuality and QoL. METHODS: Patient satisfaction and QoL were studied in 72 women who underwent DIEP flap BR using a study-specific questionnaire as well as the Short Form-36 (SF-36). RESULTS: Patient satisfaction was very high. Approximately 90% of the patients reported that they had been sufficiently informed about the procedure and its consequences, that their preoperative expectations had been met, that the reconstructed breast felt like their own and that they would choose the same procedure again and would recommend this procedure to a friend. Patient satisfaction was positively and significantly related to the reconstructed breast(s) feeling like their own. Women with secondary reconstructions were more positive about changes in sexuality and femininity than women with primary BRs. There were no clinically relevant differences in QoL between our study population and a random sample of Dutch females. CONCLUSIONS: Women with DIEP flap BRs reported high satisfaction rates. However, to compare these satisfaction rates with other forms of BR, prospective studies in comparable groups are necessary.

Predictors of outcome in a cohort of women with chronic pelvic pain - a follow-up study.

BACKGROUND: Chronic pelvic pain (CPP) in women is a long-lasting condition. AIMS: To explore changes in pain intensity, adjustment to pain, pain appraisal and coping strategies as well as to evaluate whether baseline pain appraisals and coping strategies and their changes were associated with outcome in the long term. METHODS: A follow-up study was conducted on all consecutive women who had visited a CPP-team of a university hospital. After an average period of 3.2 years 64% of them (N=84) completed questionnaires at baseline and follow-up. RESULTS: A reduction in pain intensity (p<.001, d=.6), improvement in adjustment to pain (SF-36 Physical Component Summary (p<.001, d=.4) and depressive symptoms (p<.01, d=.2)), as well as a reduction in catastrophizing pain (p<.01, d=.4) and an increase in perceived pain control (p<.01, d=.3) were observed. Neither biographic nor clinical variables were related with these changes. Pain appraisal and coping strategies at baseline did not predict changes from baseline in pain intensity. However, baseline levels of perceived pain control correlated with a change in depressive symptoms (r=-.27, p<.05), also after adjustment for pain intensity at baseline (r=-.28, p<.05). Changes from baseline in levels of catastrophizing pain were associated with changes in pain intensity (r=.44, p<.01), SF-36 Physical Component Summary (r=-.34, p<.01) and depressive symptoms (r=.71, p<.01). CONCLUSION: At a 3 year follow-up, improvement in pain intensity in women with CPP was not associated with baseline pain appraisals and coping strategies. A reduction in catastrophizing was related to better outcome in the long term.