Relationship between Body Mass Index and Outcomes in Microvascular Abdominally Based Autologous Breast Reconstruction.

BACKGROUND: Increasing body mass index (BMI) is a known risk factor for autologous microsurgical breast reconstruction. No prior studies have stratified outcomes across BMI ranges or defined the BMI at which complication rates dramatically increase. METHODS: The authors performed a retrospective chart review of all patients who underwent abdominally based autologous free flap breast reconstruction at their institution between 2004 and 2021. Clinical, surgical, and outcomes data were collected. Patients were stratified into five BMI categories: 25, 25.01 to 30, 30.01 to 35, 35.01 to 40, and greater than 40 kg/m 2 . Complication rates were analyzed across these groups, and a receiver-operating characteristic analysis was used to determine an optimal BMI cutoff point. RESULTS: A total of 365 patients (545 breasts) were included in this study. The rates of several breast complications significantly increased with increasing BMI at distinct levels, including any breast complication (BMI >30 kg/m 2 ), unplanned reoperation (BMI >35 kg/m 2 ), fat necrosis (BMI >40 kg/m 2 ), wound breakdown requiring re-operation (BMI >35 kg/m 2 ), any infection (BMI >30 kg/m 2 ), infection requiring oral antibiotics (BMI >25 kg/m 2 ), infection requiring intravenous antibiotics (BMI >35 kg/m 2 ), and mastectomy flap necrosis (BMI >35 kg/m 2 ). The rates of many abdominal complications significantly increased with increasing BMI at distinct levels as well, including delayed wound healing (BMI >30 kg/m 2 ), wound breakdown requiring re-operation (BMI >40 kg/m 2 ), any infection (BMI >25 kg/m 2 ), and infection requiring oral antibiotics (BMI >25 kg/m 2 ). Optimal BMI cutoffs of 32.7 and 30.0 kg/m 2 were determined to minimize the occurrence of any breast complication and any abdomen complication, respectively. CONCLUSIONS: Preoperative weight loss has great potential to alleviate surgical risk in overweight and obese patients pursuing autologous breast reconstruction. The authors' results quantify the risk reduction based on a patient's preoperative BMI. CLINICAL QUESTION/LEVEL OF EVIDENCE: Risk, II.

Nipple-Sparing Mastectomies in Patients over the Age of 60 Years: Factors Associated with Surgical Outcomes.

BACKGROUND: Nipple-sparing mastectomy (NSM) outcomes in the elderly have not been well characterized. The goal of this study was to evaluate NSM outcomes in patients over age 60. PATIENTS AND METHODS: A single-institution retrospective cohort study was performed for NSM patients over the age of 60 from January 2004 to January 2022. Demographic, intraoperative, and postoperative variables were collected. RESULTS: We identified 136 women who underwent a total of 200 NSMs at a mean age 65.2 years and with mean body mass index of 25. Most (56%) had invasive breast cancer, requiring neoadjuvant chemotherapy in 15%, and 17.5% had radiation prior to NSM. A total of 91% had immediate tissue expander placement. The infection rate was 19%, with 11.5% requiring expander explantation in the follow-up period. In binomial logistic regression analysis, prior radiation increased the odds of any complication by 2.9 (OR 2.93, CI 1.30-6.58, p = 0.009) and increased the odds of infection by 5.7 (OR 5.70, CI 1.95-16.66, p = 0.001), but no associations were seen for other covariates including age, comorbidities, prior chemotherapy, or presence of invasive disease. Diabetes increased the odds of wound breakdown specifically by 9.0 (OR 8.97, CI 2.01-39.92, p = 0.004). Local recurrence was 3% in mean 3.4-year follow-up. CONCLUSIONS: Our data support NSM in patients over the age of 60 years with acceptable outcomes within the standard of care. Locoregional recurrence was within the cited range of 0-5%, and only diabetes and prior radiation were associated with reconstructive complications. NSM should thus be offered when appropriate regardless of increased age to achieve oncologic and reconstructive goals.

Thinking ahead about medical treatments in advanced illness: a qualitative study of barriers and enablers in end-of-life care planning with patients and families from ethnically diverse backgrounds.

Background: This study explored whether or not, and how, terminally ill patients from ethnically diverse backgrounds and their family caregivers think ahead about deterioration and dying, and explored their engagement with health-care professionals in end-of-life care planning. Objective: The aim was to address the question, what are the barriers to and enablers of ethnically diverse patients, family caregivers and health-care professionals engaging in end-of-life care planning? Design: This was a qualitative study comprising 18 longitudinal patient-centred case studies, interviews with 19 bereaved family caregivers and 50 public and professional stakeholder responses to the findings. Setting: The study was set in Nottinghamshire and Leicestershire in the UK. Results: Key barriers - the predominant stance of patients was to live with hope, considering the future only in terms of practical matters (wills and funerals), rather than the business of dying. For some, planning ahead was counter to their faith. Health-care professionals seemed to feature little in people's lives. Some participants indicated a lack of trust and experienced a disjointed system, devoid of due regard for them. However, religious and cultural mores were of great importance to many, and there were anxieties about how the system valued and enabled these. Family duty and community expectations were foregrounded in some accounts and concern about being in the (un)care of strangers was common. Key enablers - effective communication with trusted individuals, which enables patients to feel known and that their faith, family and community life are valued. Health-care professionals getting to 'know' the person is key. Stakeholder responses highlighted the need for development of Health-care professionals' confidence, skills and training, Using stories based on the study findings was seen as an effective way to support this. A number of behavioural change techniques were also identified. Limitations: It was attempted to include a broad ethnic diversity in the sample, but the authors acknowledge that not all groups could be included. Conclusions: What constitutes good end-of-life care is influenced by the intersectionality of diverse factors, including beliefs and culture. All people desire personalised, compassionate and holistic end-of-life care, and the current frameworks for good palliative care support this. However, health-care professionals need additional skills to navigate complex, sensitive communication and enquire about aspects of people's lives that may be unfamiliar. The challenge for health-care professionals and services is the delivery of holistic care and the range of skills that are required to do this. Future work: Priorities for future research: How can health professionals identify if/when a patient is 'ready' for discussions about deterioration and dying? How can discussions about uncertain recovery and the need for decisions about treatment, especially resuscitation, be most effectively conducted in a crisis? How can professionals recognise and respond to the diversity of faith and cultural practices, and the heterogeneity between individuals of beliefs and preferences relating to the end of life? How can conversations be most effectively conducted when translation is required to enhance patient understanding? Funding: This project was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme and will be published in full in Health and Social Care Delivery Research; Vol. 11, No. X. See the NIHR Journals Library website for further project information.

This study explored the experiences of terminally ill patients and their families from different ethnic backgrounds and whether or not, and how, they think ahead about their health getting worse and about dying. It included 93 interviews from 18 patient case studies, 19 interviews with bereaved family caregivers and workshops with 50 public and professional stakeholders. Most patients and their family caregivers lived with hope, considering the future only in terms of practical matters of wills and funerals, rather than thinking about becoming less well and dying, which, for some, was counter to their beliefs. Family duty and community expectations stopped some participants from seeking additional support. However, when the family did not know how gravely ill the patient was, the patient's unexpected decline and death could be a devastating experience, with regret that they had been denied the chance to prepare and to make the best use of the time. Health-care professionals appear to feature little in people's lives. Some participants indicated a lack of trust and a poor experience of health care, but others talked of good experiences. People want care that is personal to them and compassionate. This is no different from people from white British backgrounds and supports the use of different physical, social, spiritual and psychological care frameworks used in palliative care to address the individual needs of patients and families. However, health-care professionals need additional skills to navigate complex, sensitive communication and enquire about aspects of people's lives that may be unfamiliar. Personalising care requires health-care professionals to get to 'know' the person and develop confidence and skills to support patients and their families. Training, using stories based on our interviews, was seen as an effective way to support this. Effective communication and information-sharing between trusted individuals was seen by stakeholders as important in providing better care.

Quantifying hormone receptor status in lobular breast cancer in an institutional series: the relationship between estrogen and progesterone receptor status and outcomes.

PURPOSE: Recent guidelines defined a new reporting category of ER-low-positive breast cancer based on immunohistochemistry (IHC). While low positivity of either hormone receptor is uncommon in invasive lobular carcinoma (ILC), we sought to investigate whether relatively low hormone receptor positivity was associated with tumor characteristics and patient outcomes in a single institutional cohort. METHODS: We searched an institutional database for cases of stage I-III ILC with available IHC reports. Based on prior published categories in ILC, ER was classified as low, medium, or high as defined by ER staining of 10-69%, 70-89%, and ≥ 90% respectively. PR low and high tumors were defined by < 20%, or ≥ 20% staining respectively. We used chi-squared tests, t-tests, and Cox proportional hazards models to evaluate associations between ER/PR categories and tumor characteristics or disease-free survival (DFS). RESULTS: The cohort consisted of 707 ILC cases, with 11% of cases categorized as ER low, 15.1% as medium, and 73.8% as high. The majority (67.6%) were PR high. Patients with ER low/medium expression were significantly younger, and more likely to also have PR low and/or HER2 positive tumors compared to those that were ER high. In a Cox proportional hazards model adjusting for age, stage, grade, pleomorphic histology, and treatment, ER category was not prognostic for DFS, but PR negative and PR low status each had significantly worse DFS compared to PR high status (HR 3.5, 95% CI 1.8-6.7, p < 0.001; and HR 2.0, 95% CI 1.1-3.5, p = 0.015, respectively). CONCLUSION: These findings highlight the relevance of quantifying ER and PR within ILC.

Changes in Surgical Management of the Axilla Over 11 Years - Report on More Than 1500 Breast Cancer Patients Treated with Neoadjuvant Chemotherapy on the Prospective I-SPY2 Trial.

BACKGROUND: Axillary surgery after neoadjuvant chemotherapy (NAC) is becoming less extensive. We evaluated the evolution of axillary surgery after NAC on the multi-institutional I-SPY2 prospective trial. METHODS: We examined annual rates of sentinel lymph node (SLN) surgery with resection of clipped node, if present), axillary lymph node dissection (ALND), and SLN and ALND in patients enrolled in I-SPY2 from January 1, 2011 to December 31, 2021 by clinical N status at diagnosis and pathologic N status at surgery. Cochran-Armitage trend tests were calculated to evaluate patterns over time. RESULTS: Of 1578 patients, 973 patients (61.7%) had SLN-only, 136 (8.6%) had SLN and ALND, and 469 (29.7%) had ALND-only. In the cN0 group, ALND-only decreased from 20% in 2011 to 6.25% in 2021 (p = 0.0078) and SLN-only increased from 70.0% to 87.5% (p = 0.0020). This was even more striking in patients with clinically node-positive (cN+) disease at diagnosis, where ALND-only decreased from 70.7% to 29.4% (p < 0.0001) and SLN-only significantly increased from 14.6% to 56.5% (p < 0.0001). This change was significant across subtypes (HR-/HER2-, HR+/HER2-, and HER2+). Among pathologically node-positive (pN+) patients after NAC (n = 525) ALND-only decreased from 69.0% to 39.2% (p < 0.0001) and SLN-only increased from 6.9% to 39.2% (p < 0.0001). CONCLUSIONS: Use of ALND after NAC has significantly decreased over the past decade. This is most pronounced in cN+ disease at diagnosis with an increase in the use of SLN surgery after NAC. Additionally, in pN+ disease after NAC, there has been a decrease in use of completion ALND, a practice pattern change that precedes results from clinical trials.

Evaluation of Microvascular Autologous Breast Reconstruction in Patients Older Than 60 Years.

BACKGROUND: While free-flap breast reconstruction becomes more common, it is still approached with caution in older patients. Outcomes in the elderly population have not been well characterized, especially with regard to donor-site sequalae. This study compares microvascular autologous breast reconstruction outcomes in patients older and younger 60 years. METHODS: A single-institution retrospective review was performed for microvascular autologous breast reconstruction from January 2004 through January 2021. Demographic, intraoperative, and postoperative variables, including breast flap and donor-site complications, were evaluated. RESULTS: Five hundred forty-five breast free flaps were identified, of which 478 (87.8%) were performed on patients younger than 60 years (mean, 46.2 years) and 67 (12.2%) older than 60 years (mean, 64.8 years; P = 0.000). Hyperlipidemia was significantly higher in older patients (19.4% vs 9.6%, P = 0.016). Mean operative time was 46.3 minutes faster in the older cohort ( P = 0.030). There were no significant differences in free-flap loss, venous congestion, takeback, hematoma, seroma, wound healing, or infection. Interestingly, there were significantly more total breast flap complications (28.5% vs 16.4%, P = 0.038) and higher rates of fat necrosis (9.6% vs 1.5%, P = 0.026) in the younger cohort. Significantly more abdominal donor-site complications (43.3% vs 21.3%, P = 0.000) were seen in the older people, with increased wound breakdown ( P = 0.000) and any return to the operating room (20.9% vs 9.8%, P = 0.007). Older patients were also significantly more likely to require surgical correction of an abdominal bulge or hernia (10.4% vs 4%, P = 0.020). The mean follow-up was 1.8 years. CONCLUSIONS: Our data showed no worsening of individual breast flap outcomes in the older people. However, there were significantly more abdominal complications including surgical correction of abdominal bulge and hernia. This may be related to the inherent qualities of tissue aging and should be taken into consideration for flap selection. These results support autologous breast reconstruction in patients older than 60 years, but patients should be counseled regarding potentially increased abdominal donor-site sequelae.

Immediate Versus Delayed-Immediate Autologous Breast Reconstruction After Nipple-Sparing Mastectomy.

INTRODUCTION: Autologous reconstruction following nipple-sparing mastectomy (NSM) is either performed in a delayed-immediate fashion, with a tissue expander placed initially at the time of mastectomy and autologous reconstruction performed later, or immediately at the time of NSM. It has not been determined which method of reconstruction leads to more favorable patient outcomes and lower complication rates. METHODS: We performed a retrospective chart review of all patients who underwent autologous abdomen-based free flap breast reconstruction after NSM between January 2004 and September 2021. Patients were stratified into 2 groups by timing of reconstruction (immediate and delayed-immediate). All surgical complications were analyzed. RESULTS: One hundred one patients (151 breasts) underwent NSM followed by autologous abdomen-based free flap breast reconstruction during the defined time period. Fifty-nine patients (89 breasts) underwent immediate reconstruction, whereas 42 patients (62 breasts) underwent delayed-immediate reconstruction. Considering only the autologous stage of reconstruction in both groups, the immediate reconstruction group experienced significantly more delayed wound healing, wounds requiring reoperation, mastectomy skin flap necrosis, and nipple-areolar complex necrosis. Analysis of cumulative complications from all reconstructive surgeries revealed that the immediate reconstruction group still experienced significantly greater cumulative rates of mastectomy skin flap necrosis. However, the delayed-immediate reconstruction group experienced significantly greater cumulative rates of readmission, any infection, infection requiring PO antibiotics, and infection requiring IV antibiotics. CONCLUSIONS: Immediate autologous breast reconstruction after NSM alleviates many issues seen with tissue expanders and delayed autologous reconstruction. Although mastectomy skin flap necrosis occurs at a significantly greater rate after immediate autologous reconstruction, it can often be managed conservatively.

Area Deprivation Index in Patients with Invasive Lobular Carcinoma of the Breast: Associations with Tumor Characteristics and Outcomes.

BACKGROUND: Although investigators have shown associations between socioeconomic status (SES) and outcomes in breast cancer, there is a paucity of such data for invasive lobular carcinoma (ILC), the second most common type of breast cancer. Herein we evaluated the relationship between SES with tumor features and outcomes in stage I to III patients with ILC. METHODS: We analyzed a prospectively maintained institutional ILC database and utilized the area deprivation index (ADI) to determine neighborhood adversity, an indicator of SES. We used Cox proportional hazards models in Stata 17.0 to evaluate relationships between ADI quintile (Q), race, body mass index (BMI), clinicopathologic features, treatment type, and event-free survival (EFS). RESULTS: Of 804 patients with ILC, 21.4% lived in neighborhoods classified as ADI Q1 (least resource-deprived) and 19.7% in Q5 (most resource-deprived). Higher deprivation was significantly associated with larger tumor size (3.6 cm in Q5 vs. 3.1 cm in Q1), increased presence of lymphovascular invasion (8.9% in Q5 vs. 6.7% in Q1), and decreased use of adjuvant endocrine therapy (67.1% in Q5 vs. 73.6% in Q1). On multivariable analysis, tumor size, receptor subtypes, and omission of adjuvant endocrine therapy were associated with reduced EFS. CONCLUSIONS: These data show that patients with ILC and higher ADI experience more aggressive tumors and differences in treatment. More data evaluating the complex relationships between these factors is needed to optimize outcomes for patients with ILC, regardless of SES. IMPACT: ADI is associated with differences in patients with ILC.

HER-2 low status in early-stage invasive lobular carcinoma of the breast: associated factors and outcomes in an institutional series.

PURPOSE: HER2 overexpression has a central role in breast cancer carcinogenesis and is associated with poor prognosis if untreated. Lately, identification of HER2-low breast cancer has been proposed to select patients for novel HER2-directed chemotherapy and includes cancers with immunohistochemistry 1 + or 2 + with negative FISH, encompassing approximately 55-60% of all breast carcinomas. In early-stage breast cancer, the prognostic significance of HER2 low-disease is less well understood, with a particular paucity of data evaluating the prevalence and implications of HER2-low status in invasive lobular carcinoma (ILC). METHODS: We evaluated 666 stage I-III ILC tumors from a prospectively maintained institutional database, comparing clinicopathologic features and disease-free survival (DFS) using a multivariable Cox proportional hazards model. RESULTS: HER2-low status was common in this cohort of patients with ILC, but most clinicopathologic features did not differ between HER2-low and HER2-negative cases. However, when adjusting for tumor size, number of positive nodes, ER/PR status, and local therapy received, patients with HER2-low status had worse disease-free survival (DFS) than those with HER2-negative tumors (hazard ratio 2.0, 95% confidence interval 1.0-4.1, p = 0.05). CONCLUSION: This difference in DFS supports the notion that HER2-low and HER2-negative early stage ILC may differ clinically, despite similar clinicopathologic features. Further investigation into the potential benefit of HER2 targeted therapy in HER2-low early-stage breast cancer, and specifically lobular cancer, is warranted to ensure optimal outcomes in this distinct tumor subtype.

High-level compliance to opt-out HIV testing in the emergency department (ED) of a large teaching hospital using the biochemistry sample as the sample type for HIV screening.

INTRODUCTION: HIV remains a key public health issue. National Institute for Health and Care Excellence and British HIV Association guidance recommends that patients should be offered HIV testing when admitted to hospital or attending emergency departments (EDs) in areas with a prevalence ≥ 2 per 1000. We report a novel method of testing and the first 3-year results from our HIV ED testing programme utilizing biochemistry samples for HIV testing, with the aim of improving uptake while ensuring no changes to clinical practice in EDs. METHODS: Routine ED HIV testing was implemented on 1 October 2018; it was initially opt-in and was subsequently changed to opt-out on 1 February 2019. HIV testing was added to all ED blood test order sets and was performed on the biochemistry samples of those aged 18-59 years. The age range was extended to include those aged 16+ years on 1 March 2021 along with a move to notional consent. RESULTS: A total of 78 333 HIV tests were performed from an estimated 110 683 attendees who had bloods taken in the same age range, demonstrating an overall 69.5% testing coverage. On implementation of opt-out testing after the first 4 months, the proportion of tests increased (from 57.9% to 69%). After increase in age range to 16+ years and a move to notional consent, the overall testing coverage improved to 74.2%. Of 1054 reactive results, 728 (69%) were known people living with HIV, eight (0.8%) were not contactable, two (0.2%) re-tested elsewhere and three (0.3%) declined a re-test. A total of 259 false-positives were determined by follow-up testing and 50 (4.8%) were newly diagnosed with HIV. An HIV diagnosis was suspected in only 22%, and 48% had never previously tested for HIV. CONCLUSIONS: An opt-out HIV testing programme with notional consent and using biochemistry samples within the ED is feasible, acceptable and provides an excellent opportunity to diagnose patients who do not perceive themselves to be at risk or have never tested before.

Obesity and menopausal status impact the features and molecular phenotype of invasive lobular breast cancer.

PURPOSE: We investigated the relationship between obesity, menopausal status, and invasive lobular carcinoma (ILC), the second most common histological subtype of breast cancer. Specifically, we evaluated the association between body mass index (BMI), metabolic syndrome, the 21-gene Oncotype Recurrence Score (Oncotype RS), and pathological features in patients with hormone receptor (HR)-positive, human epidermal growth factor receptor-2-negative ILC. METHODS: The study cohort included 491 patients from a prospectively maintained institutional database consisting of patients with stage I-III, HR-positive ILC who underwent surgical treatment between 1996 and 2019. RESULTS: Contrary to our expectations, we found that lower BMI was significantly associated with having higher Oncotype RS (18.9% versus 4.8%, p = 0.028) in post-menopausal patients, but was not related to tumor characteristics in pre-menopausal patients. Multivariate network analyses suggested a strong relationship between post-menopausal status itself and tumor characteristics, with lesser influence of BMI. CONCLUSION: These findings provide further insight into the recently appreciated heterogeneity within ILC and support the need for further investigation into the drivers of this disease and tailored treatment strategies.

Risk of forced marriage amongst people with learning disabilities in the UK: Perspectives of South Asian carers.

BACKGROUND: People with intellectual disabilities are at increased risk of forced marriage compared to those without intellectual disabilities. In the UK, this risk is particularly, though not exclusively, associated with South Asian communities and is linked to the desire to secure long-term care. METHOD: Focus groups and semi-structured interviews were undertaken with South Asian parents and family carers (n = 22) of adults with intellectual disability and the resultant data thematically analysed. RESULTS: Although securing care for their intellectually disabled relative was identified as a key motivator for forced marriage, other important themes also emerged. These included cultural and religious beliefs about disability and marriage, and limited understanding of relevant laws. Factors militating against forced marriage were also identified, including fears of abuse and neglect. CONCLUSIONS: Implications for the provision of services and the need for improved access to information on forced marriage of people with intellectual disabilities are highlighted.

Decision Making in Pediatric Plastic Surgery: Autonomy and Shared Approaches.

BACKGROUND: Although shared decision-making is essential to patient-centered healthcare, its role in pediatric plastic surgery remains unclear. The objective of this study was to define the preferred level of involvement in surgical decision-making among children, caregivers, and surgeons. METHODS: The authors surveyed pediatric plastic surgery patients (n = 100) and their caregivers regarding their preferences on child involvement during surgical decision-making. Fleiss' kappa was used to assess agreement between groups. Bivariate Chi-square tests and multinomial logistic regression were used to assess the relationship between decision-making preferences and select demographic factors. RESULTS: Only 34% of children and their caregivers agreed upon their decision-making preferences (k = 0.04). The majority of children (40%) and caregivers (67%) favored shared decision-making between the patient, caregiver, and surgeon. Only 16% of children preferred physician-driven decisions, while 20% of children desired complete autonomy. Children's preferences were significantly associated with their age; the relative risk of children deferring to caregivers or surgeons over a shared approach was lower for adolescents and teens compared to children under 10 years old (relative risk = 0.20; 95% confidence interval: 0.054-0.751; P = 0.02). Caregiver's preferences did not change based on the child's age, but rather were related to the child's gender. Caregivers were more likely to choose the option that gave the child more autonomy when the child was male. CONCLUSIONS: While most caregivers preferred a shared approach to decision-making, children desired greater autonomy, particularly with increasing age. Since there was limited agreement between caregivers and children, surgeons must be cognizant of differing preferences when discussing treatment plans to optimize both patient and parent satisfaction.

Saving Face: Patient Strategies to Reduce Stigma and Barriers to Effective Decision-Making Among Children With Cleft Lip.

Facial differences associated with cleft lips are often stigmatizing and can negatively impact psychosocial development and quality of life. However, little is known regarding patients' responses to societal expectations of appearance, or how these responses may impact utilization of revision surgery. Thus, patients with cleft lips at least 8 years of age (n = 31) were purposively sampled for semi-structured interviews. After verbatim transcription, first cycle coding proceeded with a semantic approach, which revealed patterns that warranted second cycle coding. The authors utilized an eclectic coding design to capture deeper meanings in thematic analysis. Additionally, survey data from a separate study were examined to evaluate participants' interest in improving appearance. Three major themes emerged, all of which reflected a desire to "save face" when interacting with society: (1) Cultural Mantras, which included societal mottos that minimized the importance of appearance; (2) Toughening Up, wherein the participants downplayed the difficulty of having a cleft; and (3) Deflection, wherein the participants took pride in facial features unrelated to their clefts. Despite these efforts to "save face," 78% of participants expressed interest in improving their appearance in the separate survey data.In conclusion, children with cleft lips try to "save face" when interacting with society by depreciating appearance, making light of clefts, and focusing on non-cleft related features. Paradoxically, many desired improvements of their appearance in an earlier survey. Awareness of these coping strategies is critical, as they may negatively impact surgeon-patient communication and inhibit patients from expressing interest in revision surgery.

Genetic testing for neurodegenerative diseases: Ethical and health communication challenges.

Advances in genomic science are informing an expansion of genetic testing for neurodegenerative diseases, which can be used for diagnostic and predictive purposes and performed in both medical and consumer genomics settings. Such testing-which is often for severe and incurable conditions like Huntington's, Alzheimer's, and Parkinson's diseases-raises important ethical and health communication challenges. This review addresses such challenges in the contexts of clinical, research, and direct-to-consumer genetic testing; these include informed consent, risk estimation and communication, potential benefits and psychosocial harms of genetic information (e.g., genetic discrimination), access to services, education and workforce needs, and health policies. The review also highlights future areas of likely growth in the field, including polygenic risk scores, use of genetic testing in clinical trials, and return of individual research results.

Staff understandings of abuse and poor practice in residential settings for adults with intellectual disabilities.

BACKGROUND: A common factor in the abuse of people with intellectual disabilities in residential settings has been the failure of care staff and frontline managers to recognise poor practice at an early stage and prevent its development into a culture of abuse. In this context, staff understandings of abuse and poor practice in residential services for people with intellectual disabilities were explored. METHOD: Semi-structured interviews (n = 56) were undertaken with care staff and frontline managers working across England. Interviews included the use of vignettes, based on real-life experiences of people with intellectual disabilities, to prompt discussion. RESULTS: Staff struggled to define either "abuse" or "poor practice", focussing more on individual acts or omissions than on institutional practices. When faced with vignettes, staff demonstrated a lack of agreement regarding what constitutes either abuse or poor practice. CONCLUSIONS: The implications for practice in residential care settings and for safeguarding training are discussed.

Caregiver-Reported Outcomes and Barriers to Care among Patients with Cleft Lip and Palate.

BACKGROUND: For children with cleft lip and/or palate, access to care is vital for optimizing speech, appearance, and psychosocial outcomes. The authors posited that inadequate access to care negatively impacts outcomes in this population. METHODS: Sixty caregivers of children with cleft lip and palate were surveyed to assess perceived barriers using the validated Barriers to Care questionnaire. The questionnaire includes 39 items divided into five subscales, with higher scores indicating fewer barriers. Caregiver-reported outcomes were assessed using the Cleft Evaluation Profile, which captures cleft-specific appearance- and speech-related outcomes. Higher scores correspond to less satisfactory outcomes. Desire for revision surgery was assessed as a binary outcome among caregivers. Multivariable regression was used to evaluate the relationship of barriers to care, caregiver-reported outcomes, and desire for revision, adjusting for clinical and demographic covariates. RESULTS: Sixty percent of caregivers perceived barriers to care, and caregivers who reported poorer access to care described poorer cleft-related outcomes (r = 0.19, p = 0.024). Caregivers with poorer skills (r = 0.17, p = 0.037), expectations (r = 0.17, p = 0.045), and pragmatics (r = 0.18, p = 0.026) subscale scores were associated with worse Cleft Evaluation Profile scores. Barriers were also negatively associated with aesthetic item scores (r = 0.11, p = 0.025). Finally, caregivers reporting fewer barriers were 21.2 percent less likely to express interest in revision surgery. CONCLUSIONS: Barriers to care were associated with poorer appearance-related outcomes and increased interest in revision among caregivers of cleft patients. Enhancing access to care is critical in order to effectively meet goals of care for these families.

Impact of the Macmillan specialist Care at Home service: a mixed methods evaluation across six sites.

BACKGROUND: The Midhurst Macmillan Specialist Palliative Care at Home Service was founded in 2006 to improve community-based palliative care provision. Principal components include; early referral; home-based clinical interventions; close partnership working; and flexible teamwork. Following a successful introduction, the model was implemented in six further sites across England. This article reports a mixed methods evaluation of the implementation across these 'Innovation Centres'. The evaluation aimed to assess the process and impact on staff, patients and carers of providing Macmillan Specialist Care at Home services across the six sites. METHODS: The study was set within a Realist Evaluation framework and used a longitudinal, mixed methods research design. Data collection over 15 months (2014-2016) included: Quantitative outcome measures - Palliative Performance Scale [PPS] and Palliative Prognostic Index [PPI] (n = 2711); Integrated Palliative Outcome Scales [IPOS] (n = 1157); Carers Support Needs Assessment Tool [CSNAT] (n = 241); Views of Informal Carers -Evaluation of Services [VOICES-SF] (n = 102); a custom-designed Service Data Tool [SDT] that gathered prospective data from each site (n = 88). Qualitative data methods included: focus groups with project team and staff (n = 32 groups with n = 190 participants), and, volunteers (n = 6 groups with n = 32 participants). Quantitative data were analysed using SPPS Vs. 21 and qualitative data was examined via thematic analysis. RESULTS: Comparison of findings across the six sites revealed the impact of their unique configurations on outcomes, compounded by variations in stage and mode of implementation. PPS, PPI and IPOS data revealed disparity in early referral criteria, complicated by contrasting interpretations of palliative care. The qualitative analysis, CSNAT and VOICES-SF data confirmed the value of the Macmillan model of care but uptake of specialist home-based clinical interventions was limited. The Macmillan brand engendered patient and carer confidence, bringing added value to existing services. Significant findings included better co-ordination of palliative care through project management and a single referral point and multi-disciplinary teamwork including leadership from consultants in palliative medicine, the role of health care assistants in rapid referral, and volunteer support. CONCLUSIONS: Macmillan Specialist Care at Home increases patient choice about place of death and enhances the quality of end of life experience. Clarification of key components is advocated to aid consistency of implementation across different sites and support future evaluative work.

Prison officers' views about hepatitis C testing and treatment: a qualitative enquiry.

AIMS AND OBJECTIVES: To explore the views of prison officers in an English category B male prison about people in prison being tested and treated for hepatitis C. BACKGROUND: Hepatitis C testing and treatment in English prisons remain low with the reasons being poorly understood. Prison officers are in continuous contact with prisoners so might observe factors that may influence people in prisons' choice in whether to accept hepatitis C testing and treatment. DESIGN: A qualitative design within an interpretative framework was employed. METHODS: Semistructured interviews were conducted with 10 prison officers at an English male category B prison. The interviews were audiorecorded and transcribed at the prison. RESULTS: Four themes emerged Safeguarding, Stigma, Confidentiality and Education. Hepatitis C testing and treatment were supported in principle but if a person in prison poses a threat to the overall security of a prison, any health issues that are not immediately life threatening will be overridden, irrespective of the financial or health consequences. The prison officers respected people in prisons' confidentiality regarding health matters, but this could be compromised during violent incidents. All of the prison officers displayed limited knowledge about hepatitis C. CONCLUSIONS: This qualitative enquiry illustrates that prison security transcends health. This suggests that health providers may need to offer greater flexibility and collaboration across the network of National Health Service hospitals to maintain continuity in treatment if a prisoner is moved to a different establishment or liberated. RELEVANCE TO CLINICAL PRACTICE: This study introduces the notion that prison security staff may have a potential role in promoting or discouraging hepatitis C testing and treatment by the ways in which their knowledge impacts on their interactions with people in prison. Engaging this staff group in educational opportunities should be a component of commissioned hepatitis service delivery in prisons.