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Abstract Measuring quality of life (QOL) after cranioplasty is increasingly evident as a necessary component of patient-centered care. For data to be useful in clinical decision-making and approval of new therapies, studies must utilize valid and reliable instruments. Our objective was to critically appraise studies evaluating QOL in adult cranioplasty patients and determine validity and relevance of the patient-reported outcome measures (PROMs) used. Electronic databases of PubMed, Embase, CINAHL, and PsychINFO were used to identify PROMs measuring QOL in adult patients with cranioplasty. The methodological approach, cranioplasty outcomes, and domains measured by the PROMs were extracted and summarized descriptively. A content analysis of the identified PROMs was completed to identify the concepts measured. From 2236 articles identified, 17 articles containing eight QOL PROMs met the inclusion criteria. None of the PROMs was specifically validated or developed for adults undergoing cranioplasty. The QOL domains included physical health, psychological health, social health, and general QOL. These four domains encompassed 216 total items among the PROMs. Appearance was only assessed in two PROMs. To our knowledge, there are currently no validated PROMs that comprehensively measure appearance, facial function, and adverse effects in adults undergoing cranioplasty. There is an urgent need to develop PROMs to measure QOL outcomes rigorously and comprehensively in this patient population to inform clinical care, research, and quality improvement initiatives. Findings from this systematic review will be used to derive an outcome instrument containing important concepts related to QOL in patients who undergo cranioplasty.

Breast reconstruction is associated with improved patient well-being after mastectomy; however, factors that contribute to post-surgical dissatisfaction remain poorly characterized. Adult women who underwent post-mastectomy implant-based or autologous breast reconstruction between 2015 and 2019 were recruited to participate in semi-structured interviews regarding their lived experiences with reconstructive care. Participants completed the BREAST-Q, and tabulated scores were used to dichotomize patient-reported outcomes as satisfied or dissatisfied (high or low) for each BREAST-Q domain. A convergent mixed-methods analysis was used to evaluate interviews for content related to satisfaction or dissatisfaction with breast reconstruction. Overall, we interviewed 21 women and identified 17 subcodes that corresponded with the five BREAST-Q domains. Sources of dissatisfaction were found to be related to the following domains: (a) low breast satisfaction due to asymmetry, cup size, and lack of sensation and physical feeling (n = 8, 38%); (b) poor sexual well-being due to shape, look and feel (n = 7, 78% [of 9 who discussed sexual well-being]); (c) reduced physical well-being of the chest due to persistent pain and weakness (n = 11, 52%); (d) reduced abdominal well-being due to changes in abdominal strength, numbness, and posture (n = 6, 38% [of 16 who underwent abdominally based reconstruction]); and (e) low psychosocial well-being impacted by an unexpected appearance that negatively influenced self-confidence and self-identity (n = 13, 62%). Patients may be unprepared for the physical, sexual, and psychosocial outcomes of breast reconstruction. Targeted strategies to improve preoperative education and shared decision making are needed to mitigate unexpectedness associated with breast reconstruction and related outcomes.

This study was designed to: (1) characterize longitudinal patient-reported outcomes (PROs) between breast cancer patients undergoing lumpectomy and mastectomy and (2) compare return to baseline scores at 3 months and 6 months postoperatively. Newly diagnosed breast cancer patients seen at an academic breast center between June 2019 and February 2021 were invited to participate in longitudinal PRO surveys at their initial clinic visit. If willing to participate, patients were emailed the validated BREAST-Q™ questionnaire at the initial clinic visit (baseline), 2 weeks after surgery, and then every 3 months for the first year. We used linear mixed models to estimate the differences in slopes over time between lumpectomy and mastectomy for each PRO measure. Pearson’s Chi-square tests with Yates’ continuity correction were used to compare proportions of patients who return to baseline PRO scores. P < 0.05 was considered significant. Of 164 patients invited to participate, 100 (61%) completed a baseline survey and were included in analyses. Mastectomy patients had significantly greater decreases in breast satisfaction (P = 0.002), psychosocial well-being (P < 0.0001), and sexual well-being (P < 0.0001) over time compared with lumpectomy patients. Both surgical groups reported a decrease in physical well-being, although the decline was more significant in lumpectomy patients (P = 0.005). At 3 months and 6 months after surgery, significantly larger proportions of lumpectomy patients returned to their baseline breast satisfaction, psychosocial well-being, and physical well-being compared with mastectomy patients. Understanding how outcomes important to patients change over the care continuum can provide opportunities for early intervention and may prevent debilitating long-term morbidities of treatment.

Rising out-of-pocket costs (OOCs) are a major concern for breast cancer survivors. However, information on how plastic surgeons performing breast reconstruction (BR) perceive and communicate cost information is limited. An electronic, anonymous survey eliciting plastic surgeons’ attitudes and behaviors regarding BR cost communication was distributed to active American Society of Plastic Surgery members. Questions were derived from previously published studies and entailed a 5-point Likert scale. Cost communication was identified based on dichotomized responses to the prompt, “I discuss the costs of breast reconstruction with my patients,” and analyzed for associated factors. Of the 5112 surgeons surveyed, 396 plastic surgeons responded (7.21%). Most of the surgeons reported having a sense of a patient’s financial well-being (65%) and an awareness of treatment costs (66.9%). Most felt a responsibility to consider the impact of BR costs (69%). Although most of the surgeons expressed that they were comfortable having OOC discussions (58.9%), only a minority reported doing so routinely (24.2%). The fewest respondents (8.6%) cited OOC as an important variable for BR decision-making. Lack of supportive tools was the most cited barrier to having cost communication with patients (64.8%). Cost communication was identified in a minority (20.2%) of surgeon–patient encounters and had no significant relationship to surgeon demographics or practice setting. Plastic surgeons rarely discuss costs of BR with patients despite having a high awareness of the topic and feeling comfortable with it. Prevailing attitudes about the importance of OOC and the lack of administrative support or cost information are likely the drivers of this mismatch and warrant further study.

BackgroundTo assess metastatic breast cancer (MBC) patient psychological factors, perceptions, and comprehension of tumor genomic testing.MethodsIn a prospective, single institution, single-arm trial, patients with MBC underwent next-generation sequencing at study entry with sequencing results released at progression. Patients who completed surveys before undergoing sequencing were included in the present secondary analysis (n = 58). We administered four validated psychosocial measures: Center for Epidemiologic Studies Depression Scale, Beck Anxiety Inventory, Trust in Physician Scale, and Communication and Attitudinal Self-Efficacy scale for Cancer. Genetic comprehension was assessed using 7-question objective and 6-question subjective measures. Longitudinal data were assessed (n = 40) using paired Wilcoxon signed rank and McNemar’s test of agreement.ResultsThere were no significant differences between the beginning and end of study in depression, anxiety, physician trust, or self-efficacy (median time on study: 7.6 months). Depression and anxiety were positively associated with each other and both negatively associated with self-efficacy. Self-efficacy decreased from pre- to post-genomic testing (p = 0.05). Objective genetics comprehension did not significantly change from pre- to post-genomic testing, but patients expressed increased confidence in their ability to teach others about genetics (p = 0.04). Objective comprehension was significantly lower in non-white patients (p = 0.02) and patients with lower income (p = 0.04).ConclusionsThis is the only study, to our knowledge, to longitudinally evaluate multiple psychological metrics in MBC as patients undergo tumor genomic testing. Overall, psychological dimensions remained stable over the duration of tumor genomic testing. Among patients with MBC, depression and anxiety metrics were negatively correlated with patient self-efficacy. Patients undergoing somatic genomic testing had limited genomic knowledge, which varied by demographic groups and may warrant additional educational intervention.Clinical trial informationNCT01987726, registered November 13, 2013.

Despite the increasing burden, breast cancer control in sub-Saharan Africa is insufficient. Late diagnosis and lack of early detection and screening services contribute to high mortality. Clinical breast exam (CBE) screening can be valuable in low-income countries, including use of community health workers and non-health professionals to conduct exams. We assessed experiences of women who underwent CBE screening by trained laywomen in Lilongwe, Malawi, as part of a pilot program. The pilot study invited women attending urban health clinics to a breast cancer educational talk followed by CBE screening by trained laywomen. We purposively sampled participants from the pilot study and interviewed them about the screening experience and future cancer education programs and services. Overall participants had positive experiences and were willing to undergo CBE screening by trained laywomen. Participants were motivated by the educational talk, shared newly acquired cancer knowledge with their social networks, and encouraged others to seek screening. Screened women suggested strategies for future interventions including combining breast and cervical cancer screening, using female providers, partnering with community leaders to increase uptake, and expanding services into the community. Asymptomatic Malawian women accepted CBE screening by trained laywomen and considered breast cancer an important health issue. Women appreciated combined education and screening services and proposed further linkage of breast and cervical cancer screening. Based on our results, training laywomen to educate the public on breast cancer and conduct CBE is a feasible breast cancer control strategy in sub-Saharan Africa.

Contralateral prophylactic mastectomy (CPM) rates have been increasing in the US, and although high levels of satisfaction with CPM have been reported, few studies have evaluated the long-term effects on body image, comparing CPM with breast-conserving surgery (BCS) and unilateral mastectomy (UM). We analyzed responses from a survey of women with both a personal and family history of breast cancer who were enrolled in the Sister Study (n = 1176). Among women who underwent mastectomy, we examined satisfaction with the mastectomy decision, as well as variation in the use of reconstruction and experience of complications. Five survey items, evaluated individually and as a summed total score, were used to compare body image across surgery types (BCS, UM without reconstruction, CPM without reconstruction, UM with reconstruction, and CPM with reconstruction). Participants were, on average, 3.6 years post-diagnosis at the time of survey (standard deviation 1.7). The majority of women (97% of CPM, 89% of UM) were satisfied with their mastectomy decision. Reconstruction was more common after CPM than after UM (70 vs. 47%), as were complications (28 vs. 19%). Body image scores were significantly worse among women who underwent CPM than among women who underwent BCS, with the lowest scores among women who underwent CPM without reconstruction. In our sample, most women were highly satisfied with their mastectomy decision, including those who elected to undergo CPM. However, body image was lower among those who underwent CPM than among those who underwent BCS. Our findings may inform decisions among women considering various courses of surgical treatment.

Background The purpose of this paper is to examine the acceptability, feasibility, reliability and validity of a new decision quality instrument that assesses the extent to which patients are informed and receive treatments that match their goals. Methods Cross-sectional mail survey of recent breast cancer survivors, providers and healthy controls and a retest survey of survivors. The decision quality instrument includes knowledge questions and a set of goals, and results in two scores: a breast cancer surgery knowledge score and a concordance score, which reflects the percentage of patients who received treatments that match their goals. Hypotheses related to acceptability, feasibility, discriminant validity, content validity, predictive validity and retest reliability of the survey instrument were examined. Results We had responses from 440 eligible patients, 88 providers and 35 healthy controls. The decision quality instrument was feasible to implement in this study, with low missing data. The knowledge score had good retest reliability (intraclass correlation coefficient = 0.70) and discriminated between providers and patients (mean difference 35%, p Conclusions The decision quality instrument met the criteria of feasibility, reliability, discriminant and content validity in this sample. Additional research to examine performance of the instrument in prospective studies and more diverse populations is needed.