Are expectations of labour and birth fulfilled? A qualitative investigation of first-time parents.

AIM: To describe if first-time parents' expectations of labour and birth, explored during the third trimester of pregnancy, were fulfilled or not when investigated 1 year following birth. DESIGN: Qualitative Husserlian phenomenological approach. METHODS: The sample comprises 10 parents (five couples), who participated in an online semi-structured audio-recorded individual interview conducted 1 year after birth, between September 2020 and October 2020. Parents' expectations of labour and birth, described throughout a focus group discussion on pregnancy, were compared with their experience explored 1 year after birth. A thematic analysis was adopted and member checking was used to validate participants' thoughts. RESULTS: Participants gave birth in a II level maternity unit and one-to-one midwifery care was provided. Although during the focus group conducted in pregnancy, women reported being aware of the unpredictable nature of childbirth, they expressed sadness and failure after experiencing some unexpected interventions. The midwife was a reassuring guide, as expected; however, sometimes, the communication was not effective, and women perceived lack of support. Some women partly blame themselves for not being prepared to manage labour pain, which hurt more than expected. Feeling of uncertainty about events were experienced in relation to seeking care at an early stage of labour, which confirmed the fears expressed during pregnancy. During the antenatal focus group discussion, fathers doubted they could be helpful for the labouring women. This negative emotion was confirmed after birth. However, they understood the importance to be present and to support their partner. CONCLUSIONS: One year after birth, participants had consistent memories of their birth experience. Professionals might identify fundamental components of quality maternity care that are meaningful for parents, with the potential to generate a long-term positive health impact on them. Respectful maternity care should be ensured through a family-centred approach, with the aim to promote satisfaction. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: The study highlights the importance of taking parents' expectations into account when providing antenatal care to tailor individualized support that addresses their distinct needs and preferences. Healthcare professionals might consider initiating a post-natal discussion with parents to assess whether their needs and perspectives have been addressed. This perspective may present valuable insights to achieve long-term positive outcomes, provide high-quality maternity care, address issues and make improvements. IMPACT: The study showed that 1 year after birth, parents can accurately recall their birth. They might also give significant insights into fundamental components of care that they value as crucial to shape a positive birthing experience. Professionals should use this information to build solutions, promoting long-term well-being for parents. Respectful interactions and trusting relationships emerged as key elements in parents' experience. A midwifery care focused on parents' needs may contribute to the achievement of positive birth memories. REPORTING METHOD: This study used the Standards for Reporting Qualitative Research checklist. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.

Effect of continuous positive airway pressure treatment of obstructive sleep apnea-hypopnea in multiple sclerosis: A randomized, double-blind, placebo-controlled trial (SAMS-PAP study).

OBJECTIVE: The aim of this study was to evaluate the effect of continuous positive airway pressure (CPAP) treatment on the Fatigue Severity Scale (FSS, preplanned primary outcome), another fatigue measure, sleep quality, somnolence, pain, disability, and quality of life in multiple sclerosis (MS) patients with obstructive sleep apnea-hypopnea (OSAH). METHODS: In a randomized, double-blind trial (NCT01746342), MS patients with fatigue, poor subjective sleep quality, and OSAH (apnea-hypopnea index of ⩾ 15 events per hour/sleep), but without severe OSAH (apnea-hypopnea index > 30, and 4% oxygen desaturation index > 15 events/hour or severe somnolence), were randomized to fixed CPAP or sham CPAP for 6 months. Outcome assessments were performed at 3 and 6 months. RESULTS: Of 49 randomized patients, 34 completed the protocol. Among completers, FSS did not improve with CPAP compared to sham at 6 months. FSS tended to improve (p = 0.09), and sleepiness (Epworth Sleepiness Scale) improved significantly (p = 0.03) at 3 months with CPAP compared to sham, but there were no other improvements with CPAP at either study evaluation. CONCLUSION: In non-severe OSAH patients, CPAP did not significantly improve the primary outcome of FSS change at 6 months. In secondary analyses, we found a trend to improved FSS, and a significant reduction in somnolence with CPAP at 3 months.

Improving the sexual health of young people experiencing homelessness.

The sexual health needs of young people experiencing homelessness in the UK have not been researched adequately. This study aimed to examine knowledge and attitudes around sexual health and contraceptive use amongst this vulnerable group to develop suitable models of care in the community. A qualitative ethnographic case-study following Burawoy's extended case method was used. Semi-structured interviews with 29 young people experiencing homelessness and five key workers in London hostels were carried out together with ethnographic observations and analysis of documentary evidence. Thematic analysis was undertaken. Demographic data were collected. Three significant themes were identified: risks and extreme vulnerability, relationships and communication difficulties and emergence of a culture of homelessness. Young people experiencing homelessness require specialist delivery of sexual health care in safe surroundings. Initial care should focus on assessment of basic needs and current state of being. Establishing trusting relationships and considering ongoing vulnerability, can help promote meaningful and personalised sexual healthcare both at policy and practice level.

Updated Assessment of Colorectal Cancer Incidence in the U.S. by Age, Sex, and Race/Ethnicity.

BACKGROUND: Whether recent updates to colon cancer screening guidelines benefit men and women or all race/ethnic groups equally is not clear. AIMS: The aim of this study is to evaluate age-, sex-, and race/ethnicity-specific trends in CRC incidence and disease burden among adults. METHODS: Using 2000-2014 surveillance, epidemiology, and end results database, annual CRC incidence (per 100,000 persons/year) among U.S. adults was categorized by age (using 10-year age intervals) and stratified by sex and race/ethnicity. Comparison of incidence between groups utilized the z-statistic with p < 0.05 indicating statistical significance. RESULTS: Overall, CRC incidence was the highest among patients aged ≥ 80 years (330.8 per 100,000 persons/year), which was significantly higher in men versus women (377.2 vs. 304.3 per 100,000 persons/year, p < 0.001). CRC incidence in younger individuals was 22.8 per 100,000 persons/year (age 40-49) and 6.8 per 100,000 persons/year (age 30-39). CRC incidence was significantly higher in African Americans compared to non-Hispanic whites. From 2000 to 2014, CRC incidence declined in all age groups over age 60, remained stable in age 50-59, and demonstrated proportional increases in among age 20-49 years. While CRC incidence in all race/ethnic groups aged ≥ 60 years declined, Hispanics aged 50-59 increased 21.9%, but remained stable in other race/ethnic groups. Race/ethnicity-specific disparities in CRC incidence in patients aged 20-49 were also observed. CONCLUSIONS: While CRC incidence has declined among U.S. adults aged ≥ 60, increasing incidence among patients aged < 50 is concerning. Identifying risk factors among "average-risk" patients is needed to better implement targeted screening of individuals not currently meeting CRC screening criteria.

Removal of babies at birth and the moral distress of midwives.

BACKGROUND: Midwives and nurses appear vulnerable to moral distress when caring for women whose babies are removed at birth. They may experience professional dissatisfaction and their relationships with women, families and colleagues may be compromised. The impact of moral distress may manifest as anger, guilt, frustration, anxiety and a desire to give up their profession. While there has been much attention exploring the concept of moral distress in midwifery, this is the first study to explore its association in this context. AIM: This article explores midwives' experiences of moral distress when providing care to women whose babies were removed at birth and gives valuable insight into an issue nurses and midwives encounter in their profession. METHODS: Four mothers and eight midwives took part in this research. Narrative inquiry incorporating photo-elicitation techniques was used to generate data; mothers were interviewed face to face and midwives through focus groups. The images and audio data were collected, transcribed and analysed for emerging themes. For the purpose of this article, only the midwives' stories are reported. This research received a favourable ethical opinion from the University of Surrey Ethics committee. ETHICAL CONSIDERATIONS: This study received a favourable ethical approval from a higher education institutes ethics committee. RESULTS: Midwives who care for women whose babies are removed at birth report it as one of the most distressing areas of contemporary clinical practice. Furthermore, they report feelings of guilt, helplessness and betrayal of the midwife-mother relationship. Many of the midwives in this study state that these experiences stay with them for a long time, far more than more joyful aspects of their role. CONCLUSION: Midwives experience moral distress. Support systems, education and training must be available to them if we are to reduce the long-term impact upon them, alleviate their distress and prevent them from leaving the profession.

Assessing the safety of beta-blocker therapy in cirrhosis patients with ascites: A meta-analysis.

BACKGROUND & AIMS: Beta-blocker therapy is effective at reducing risks of variceal bleeding. However, beta-blockers may detrimentally exacerbate the underlying haemodynamic changes in cirrhosis. A systematic review and meta-analysis was performed to evaluate impact of beta-blockers on all-cause mortality among cirrhosis patients with ascites. METHODS: A literature search identified studies that evaluated beta-blocker vs no beta-blocker therapy in cirrhosis patients with ascites. The primary outcome was all-cause mortality with subcohort analysis of patients with refractory or severe ascites. Quality of observational studies was assessed with Newcastle-Ottawa Scale and overall certainty of the evidence was assessed using Grading of Recommendations Assessment, Development and Evaluation (GRADE) system. RESULTS: Eight observational studies, representing 3627 cirrhosis patients with ascites (1630 treated with beta-blockers and 1997 not treated), were included. Pooled all-cause mortality was 38.6% in beta-blocker group vs 42.2% in no beta-blocker group (RR 0.93, 95% CI 0.77-1.13, χ2  = 54.03, I2  = 87%). Subcohort analysis of cirrhosis patients with refractory or severe ascites demonstrated 33.3% mortality in beta-blocker group vs 32.1% in no beta-blocker group (RR 0.99, 95% CI 0.70-1.40, χ2  = 32.99, and I2  = 82%). Three studies were good quality and five studies were fair quality. GRADE rating was 'very low' certainty of evidence, given concern for bias and inconsistency stemming from significant heterogeneity. CONCLUSION: No significant increase in all-cause mortality was observed in cirrhosis patients with ascites treated with beta-blockers. However, given the low certainty of the evidence, high quality prospective studies are needed.

Low Rates of Retention Into Hepatocellular Carcinoma (HCC) Surveillance Program After Initial HCC Screening.

GOALS: To evaluate rates and predictors of retention into hepatocellular carcinoma (HCC) surveillance beyond initial screening among underserved cirrhosis patients. BACKGROUND: Although initial HCC screening among cirrhosis patients remains low, few studies have evaluated retention to HCC surveillance beyond initial screening. METHODS: We retrospectively evaluated all consecutive adults with cirrhosis from 2014 to 2017 at a single underserved safety net hospital system to determine rates of HCC surveillance at 6 months and at 1 year beyond initial screening. Rates of HCC surveillance was stratified by sex, race/ethnicity, and etiology of liver disease. Multivariate Cox proportional hazards models evaluated predictors of retention into HCC surveillance. RESULTS: Among 235 cirrhosis patients [hepatitis C virus: 35.7%, hepatitis B virus (HBV): 15.7%, alcoholic cirrhosis: 36.2%, nonalcoholic steatohepatitis (NASH): 8.1%], mean age of cirrhosis diagnosis was 54.2±8.9 years. Overall, 74.8% received initial screening within 1 year of cirrhosis diagnosis. Among those who completed initial screening, 47.6% [95% confidence interval (CI), 41.4-54.2) received second surveillance within 1 year. On multivariate analyses, patients with NASH and HBV were significantly more likely to receive second HCC surveillance compared with hepatitis C virus, HBV (hazard ratio, 2.32; 95% CI, 1.18-4.56; P=0.014) and NASH (hazard ratio, 2.49; 95% CI, 1.22-5.11; P=0.012). No sex or race-specific/ethnicity-specific differences in HCC surveillance retention were observed. CONCLUSIONS: Although overall rates of initial HCC screening among cirrhosis patients is nearly 75%, retention into continued HCC surveillance is poor, with less than half of patients undergoing subsequent HCC surveillance. Cirrhosis patients with HBV and NASH were more likely to be retained into HCC surveillance.

Cirrhosis Patients with Nonalcoholic Steatohepatitis Are Significantly Less Likely to Receive Surveillance for Hepatocellular Carcinoma.

BACKGROUND: Disparities in receipt of hepatocellular carcinoma (HCC) surveillance contribute to disparities in overall survival outcomes. AIM: We aim to evaluate disparities in receipt of routine HCC surveillance among patients with cirrhosis in a large urban safety-net hospital. METHODS: Consecutive adults (age ≥ 18) with cirrhosis from July 1, 2014, to December 31, 2015, were retrospectively evaluated to determine rates of receiving appropriate HCC surveillance within 6 months and 1 year after diagnosis of cirrhosis. Rates of HCC surveillance were stratified by sex, race/ethnicity, and liver disease etiology. Multivariate Cox proportional hazards models were utilized to evaluate for predictors of receiving appropriate HCC surveillance. RESULTS: Among 157 cirrhosis patients enrolled [hepatitis C virus (HCV): 29.9%, hepatitis B virus: 13.4%, alcoholic cirrhosis: 44.6%, nonalcoholic steatohepatitis (NASH): 8.9%], mean age of cirrhosis diagnosis was 53.8 ± 9.0 years. Among these patients, 49% received (n = 77) HCC surveillance within 6 months and 78% (n = 123) were surveyed within 1 year of cirrhosis diagnosis. On multivariate analyses, patients with NASH cirrhosis were significantly less likely to receive HCC surveillance compared with chronic HCV cirrhosis patients (HR 0.44, 95% CI 0.19-0.99, p < 0.05). No significant sex-specific or race/ethnicity-specific disparities in receipt of HCC surveillance were observed. CONCLUSION: Among a diverse safety-net hospital population, sub-optimal HCC surveillance rates were observed: Only 49% of cirrhosis patients received HCC surveillance within 6 months, and 78% of cirrhosis patients received HCC surveillance within 1 year. Differences in rates of HCC screening by liver disease etiology were observed.

Obstructive sleep apnea in Parkinson's disease patients: effect of Sinemet CR taken at bedtime.

PURPOSE: Obstructive sleep apnea (OSA) results from upper airway (UA) obstruction. In Parkinson's disease (PD), levodopa improves UA obstruction during wakefulness. We hypothesized that bedtime controlled-release levodopa (Sinemet CR) is associated with less severe OSA (lower apnea-hypopnea index [AHI]) in PD patients. METHODS: Idiopathic PD subjects underwent nocturnal polysomnography (PSG) and were divided into those taking bedtime Sinemet CR (SinCR+) and those not taking Sinemet CR (SinCR-). Outcomes were compared between groups for PSG recordings analyzed in whole and split at their mid-point with each half analyzed separately, using linear regression. RESULTS: Fifty-seven subjects were studied, eight SinCR+, and 49 SinCR-. They were 65 % male, aged 64.4 ± 10.3 years (mean ± SD), with body mass index 27.26 ± 3.98 kg/m(2). The whole night AHI was 15.6 ± 13.3 and 29.1 ± 20.8 in SinCR+ and SinCR-, respectively (p = 0.07 unadjusted, p = 0.11 adjusted for confounders). A similar trend was observed in the first half of the night. In the second half, the SinCR+ group had significantly lower AHI (beta = -18.8; p = 0.01 adjusted) and respiratory arousal index (beta = -14.2; p = 0.02 adjusted) than the SinCR- group. CONCLUSIONS: Bedtime Sinemet CR appears to reduce OSA in PD patients. There were no significant differences between groups in the first half of the night likely because of residual effects of short-acting levodopa in both groups, while Sinemet CR had residual effect in the second half. These results possibly provide an alternative to help manage OSA and improve sleep quality in PD patients.

Exploring obstructive sleep apnea and sleep architecture in Parkinson's disease motor subtypes.

INTRODUCTION: Parkinson's disease (PD) can be divided into motor subtypes: postural instability/gait difficulty (PIGD), tremor dominant, and indeterminate. This study aimed to assess differences in sleep structure and obstructive sleep apnea (OSA) between the PIGD and non-PIGD subtypes. METHODS: PD participants with or without OSA (defined as apnea-hypopnea index (AHI) ≥ 15 events/hour on overnight polysomnography) were included. Patients were separated into two groups: PIGD and non-PIGD. Linear regression was used to explore differences in sleep, AHI, and other respiratory parameters between groups (adjusted for variables determined a priori). Logistic regression adjusted for the same variables was used to determine if the proportion of patients with OSA differed across groups. Subset analyses were performed: subset 1 excluding patients on psychoactive medication; subset 2 excluding patients taking levodopa or dopaminergic agonists (DAs) at nighttime and subset 3 excluding patients on either of the abovementioned drugs. RESULTS: 146 participants were studied. The non-PIGD group had less N3 sleep compared to the PIGD group (12.4% vs 16.9% p = 0.06), reaching significance in subsets 1 and 3. The AHI was significantly lower in the PIGD group (p = 0.047), including when medication effects were removed (p < 0.05). OSA was more frequent in the non-PIGD group, but only significantly in subset 3 (adjusted OR 0.3, p = 0.04). CONCLUSION: OSA may be more severe in non-PIGD subtypes, and more frequent, in a subset free of psychoactive medication, and of levodopa and DAs, possibly owing to motor complications and dyskinesia. Future studies are required to confirm this.

Long term effects of continuous positive airway pressure treatment of obstructive sleep apnea-hypopnea syndrome in multiple sclerosis patients.

BACKGROUND: Obstructive sleep apnea-hypopnea (OSAH) is common in MS patients and is associated with fatigue. We recently published a randomized, controlled trial (RCT) of active vs sham continuous positive airway pressure (CPAP) treatment in MS patients with fatigue, poor sleep quality, and (OSAH) (Mult Scl J 2022;28:82-92). Our aim was to evaluate the long-term effects of CPAP treatment on fatigue (Fatigue Severity Scale, FSS, primary outcome) and other clinical outcomes in MS patients with OSAH. METHODS: Following the RCT, participants were offered treatment with CPAP and participation in an open label study. Patients were re-evaluated with RCT outcome measures at least 6 months after completion of the RCT. RESULTS: Twenty-eight of 34 (82 %) RCT-completers participated in this study a mean of 2.7 years after the RCT. Sixteen (57 %) patients were treated with CPAP (mean use 5.4 ± 1.0 h/night during the 6 months prior to follow-up visit), while the other 12 patients declined CPAP use and received no other OSAH treatments. Baseline clinical characteristics, including MS related disability and sleep outcomes, were not significantly different between CPAP-treated vs non-CPAP treated patients. Patients using CPAP at follow-up (n = 16) demonstrated significant improvements from RCT baseline in FSS (p = 0.005), Fatigue Scale for Motor and Cognitive Functions (p = 0.008, p = 0.012), Pittsburgh Sleep Quality Index (p = 0.016), Center of Epidemiological Studies-Depression Scale (p = 0.05), and Multiple Sclerosis Quality of Life-54 (MSQOL-54) physical and mental component scores (p = 0.012, p = 0.023), but no improvements in Epworth Sleepiness Scale, Pain Visual Analog Scale, or Expanded Disability Status Scale. Patients not using CPAP (n = 12) had no significant improvements in outcome measures. Using a linear mixed model, FSS (p = 0.03), morning fatigue (p = 0.048), and MSQOL-54 physical component score (p = 0.02) improved significantly in CPAP treated patients compared with non-CPAP treated patients from RCT baseline. CONCLUSION: In this post-RCT open label study, long-term CPAP use was associated with improved fatigue (FSS, our primary outcome) and physical quality of life in MS patients with OSAH.

Chronic Hepatitis B Virus and Hepatitis D Virus: New Developments.

Hepatitis B virus (HBV) and hepatitis D virus are leading causes of morbidity and mortality worldwide. Despite the availability of HBV vaccinations that are 98% to 100% effective, an estimated 820,000 annual deaths were attributed to HBV in 2019, mainly related to the sequelae of cirrhosis and hepatocellular carcinoma. Because disease prevalence is concentrated outside of the United States, it is overlooked, but with expanded vaccination recommendations provided by the Centers for Disease Control and Prevention and recommended screening, as well as heightened awareness by health care providers, we can work toward the eradication of this preventable disease.

Validation of STOP, STOP-BANG, STOP-BAG, STOP-B28, and GOAL screening tools for identification of obstructive sleep apnea in patients with Parkinson disease.

STUDY OBJECTIVES: Obstructive sleep apnea (OSA) is common in Parkinson disease (PD). Questionnaires can be used as screening tools and have been used as a surrogate definition of OSA in large-scale research. This study aimed to validate the performance of STOP, STOP-BANG, STOP-BAG, STOP-B28, and GOAL and OSA predictors as tools to identify OSA in PD. METHODS: Data were analyzed from a PD cohort study in which OSA was diagnosed using laboratory polysomnography. We calculated sensitivity and specificity of each questionnaire for OSA using different definitions and performed receiver operating characteristics curve analysis. Linear regression was used to assess adjusted associations between questionnaires and outcomes: Montreal Cognitive Assessment, Epworth Sleepiness Scale, and Movement Disorder Society revision of the Unified Parkinson Disease Rating Scale. RESULTS: Questionnaire data were available for 68 PD patients (61.8% male, mean age 64.5 [standard deviation 9.9] years, and Hoehn and Yahr score 2.1 [0.8]). OSA (apnea-hypopnea index ≥ 15 events/h) occurred in 69.4% of participants. STOP-B28 ≥ 2 presented a higher sensitivity for OSA than STOP ≥ 2 (0.76 vs 0.65, respectively) and slightly lower specificity (0.65 vs 0.70, respectively). GOAL ≥ 2 had the highest sensitivity but poor specificity. Loud snoring had sensitivity 0.63 and specificity 0.65. STOP and snoring were significantly associated with Montreal Cognitive Assessment, Epworth Sleepiness Scale, and Movement Disorder Society revision of the Unified Parkinson Disease Rating Scale (total, motor, and nonmotor); STOP-BANG, STOP-BAG, and STOP-B28 showed associations with most outcomes, but the GOAL showed none. CONCLUSIONS: The STOP-B28 followed by STOP and presence of loud snoring alone seem to have the best overall properties to identify PD patients with OSA, whose clinical characteristics differ from the general population with OSA. CITATION: Gomes T, Benedetti A, Lafontaine A-L, Kimoff RJ Robinson A, Kaminska M. Validation of STOP, STOP-BANG, STOP-BAG, STOP-B28, and GOAL screening tools for identification of obstructive sleep apnea in patients with Parkinson disease. J Clin Sleep Med. 2023;19(1):45-54.

What do we know about the psychosocial issues associated with cancer during pregnancy? A scoping review and gap analysis.

OBJECTIVES: There is a global increase in the number of women diagnosed with cancer during their pregnancy and a nascent evidence base to guide their supportive care. The purposes of this study were to (1) map research on the psychosocial issues affecting women and their partners on diagnosis and treatment for cancer during pregnancy; (2) determine available supportive care or educational interventions; and (3) identify knowledge gaps for future research and development. DESIGN: Scoping review. SEARCH STRATEGY: Six databases were searched (Scopus, CINAHL, PsycINFO, Medline, Intermid, Maternal and Infant Health) to retrieve primary research (January 1995 to November 2021) investigating women and/or their partner's decision-making and their psychosocial outcomes during and after pregnancy. DATA EXTRACTION AND SYNTHESIS: Sociodemographic, gestational and disease characteristics of participants and psychosocial issues identified were extracted. Leventhal's self-regulatory model of illness provided a framework for mapping study findings enabling evidence synthesis and gap analysis. RESULTS: Twelve studies were included, conducted in eight countries in six continents. Most women (70% of 217) were diagnosed with breast cancer during pregnancy. Reporting of sociodemographic, psychiatric, obstetric and oncological characteristics that are important in assessing psychosocial outcomes was inconsistent. None of the studies had a longitudinal design and no supportive care or educational interventions were identified. The gap analysis highlighted the lack of evidence about pathways to diagnosis, impact of late effects and how internal/social resources may affect outcomes. CONCLUSIONS: Research has focused on women with gestational breast cancer. Little is known about those diagnosed with other cancers. We encourage future study designs to capture data on sociodemographic, obstetric, oncological and psychiatric characteristics and adopt a longitudinal approach to explore the longer term psychosocial impact on women and their families. Future research should include outcomes that are meaningful for women (and their partners) and draw on international collaboration to accelerate progress in this field.

A Spontaneous Melanoma Mouse Model Applicable for a Longitudinal Chemotherapy and Immunotherapy Study.

Mouse models that reflect human disorders provide invaluable tools for the translation of basic science discoveries to clinical therapies. However, many of these in vivo therapeutic studies are short term and do not accurately mimic patient conditions. In this study, we used a fully immunocompetent, transgenic mouse model, TGS, in which the spontaneous development of metastatic melanoma is driven by the ectopic expression of a normal neuronal receptor, mGluR1, as a model to assess longitudinal treatment response (up to 8 months) with an inhibitor of glutamatergic signaling, troriluzole, which is a prodrug of riluzole, plus an antibody against PD-1, an immune checkpoint inhibitor. Our results reveal a sex-biased treatment response that led to improved survival in troriluzole and/or anti-PD-1-treated male mice that correlated with differential CD8+ T cells and CD11b+ myeloid cell populations in the tumor-stromal interface, supporting the notion that this model is a responsive and tractable system for evaluating therapeutic regimens for melanoma in an immunocompetent setting.

The unpredictable nature of labour and birth: A qualitative investigation regarding expectations of Italian parents to-be.

OBJECTIVE: to explore first-time Italian parents' expectations of labour and birth. DESIGN: qualitative Husserlian phenomenological approach, using face-to-face focus groups for parents during the late third trimester of pregnancy. Data analysis, using Colaizzi's phenomenological method, included the processes of reading and re-reading the text to extract relevant statements in order to identify themes and finally member checking was performed to validate participants' expressions SETTING: consultant-led maternity unit in Northern Italy, with approximately 2500 births per annum. PARTICIPANTS: purposive sample of eight first-time parents-to-be, with a straightforward singleton pregnancy, who participated in two focus groups during pregnancy, one for women and one for their partners, to explore their expectations of birth. FINDINGS: uncertainties, doubts and fears were reported by all women. Although they expected to have a normal birth, they remained open-minded due to the awareness of the unpredictable nature of childbirth. One of the strongest emotions expressed by women was that of fear, especially of labour. They found different strategies to cope with those fears and to anticipate their potential disappointment and frustration regarding a childbirth experience that potentially could differ from their expectations. Women wanted their partner with them to share the birth experience and they valued their presence as essential. The midwife was expected to be a supportive guide. Fathers-to-be, although happy about the idea to be present at birth, were also concerned about their reaction to an unknown experience, about the woman's labour pain and were worried about not being helpful to her. CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: to our knowledge this is the first such study to be conducted in Italy. In order to support families as a whole, the importance of the father in a supportive role and as an essential parent himself should be addressed, considering his wishes. Midwives should strive to provide family centre-care, to be supportive and sensitive. Antenatal education classes should be conducted with both parents in order to understand their expectations, give information about duration and stages of labour and birth, prepare for parenthood, addressing fears and enhancing a positive experience of birth.

Modular flexibility of dystrophin: implications for gene therapy of Duchenne muscular dystrophy.

Attempts to develop gene therapy for Duchenne muscular dystrophy (DMD) have been complicated by the enormous size of the dystrophin gene. We have performed a detailed functional analysis of dystrophin structural domains and show that multiple regions of the protein can be deleted in various combinations to generate highly functional mini- and micro-dystrophins. Studies in transgenic mdx mice, a model for DMD, reveal that a wide variety of functional characteristics of dystrophy are prevented by some of these truncated dystrophins. Muscles expressing the smallest dystrophins are fully protected against damage caused by muscle activity and are not morphologically different from normal muscle. Moreover, injection of adeno-associated viruses carrying micro-dystrophins into dystrophic muscles of immunocompetent mdx mice results in a striking reversal of histopathological features of this disease. These results demonstrate that the dystrophic pathology can be both prevented and reversed by gene therapy using micro-dystrophins.

Ethnicity and Insurance-Specific Disparities in the Model for End-Stage Liver Disease Score at Time of Liver Transplant Waitlist Registration and its Impact on Mortality.

BACKGROUND AND AIMS: Disparities in timely referral to liver transplantation (LT) evaluation persist. We aim to examine race/ethnicity and insurance-specific differences in the Model for End-Stage Liver Disease (MELD) score at time of waitlist (WL) registration and its impact on WL survival. METHODS: We retrospectively evaluated U.S. adults listed for LT using 2005-2018 United Network for Organ Sharing LT registry. Multiple linear regression methods examined factors associated with MELD at listing, and Fine-Gray competing risks regression were used to analyze WL mortality. RESULTS: Among 144,163 WL registrants (median age = 56 years, 65.3% male, 56.4% private insurance, 23.3% Medicare, 15.7% Medicaid), mean WL MELD at listing was higher in African Americans versus non-Hispanic whites (2.57 points higher, 95%CI: 2.40-2.74, P < 0.001). Compared with patients with private insurance, adjusted mean WL MELD was higher among those with no insurance, Medicare, or Medicaid (P < 0.001 for all). After correcting for differences in MELD at listing, Asians had lower risk of WL death versus non-Hispanic whites (subhazard ratio (SHR): 0.92, 95% CI: 0.86-1.00, P = 0.04), but no difference was observed in African Americans or Hispanics. Compared with patients with private insurance, higher risk of WL death was observed in patients with no insurance (SHR: 1.33, 95%CI: 1.14-1.56, P < 0.001), Medicare (SHR: 1.20, 95%CI: 1.16-1.25, P < 0.001), or Medicaid (SHR: 1.22, 95%CI: 1.17-1.27, P < 0.001). CONCLUSION: Higher MELD scores at listing among African Americans did not translate into increased WL mortality. Patients with Medicare, Medicaid, or uninsured had significantly higher WL mortality than privately insured patients, even after correcting for disparities in MELD scores at listing.

It's time to reconsider how we define health: Perspective from disability and chronic condition.

Our understanding of health has changed substantially since the World Health Organization initially defined health in 1948 as "a state of complete physical, mental and social and well-being and not merely the absence of disease or infirmity". These changes include reconceptualizing health on a continuum rather than as a static state, and adding existential health to physical, mental, and social well-being. Further, good health requires adaptation in coping with stress and is influenced by social, personal and environmental factors. Building on prior work, we propose a reconsidered 2020 definition: "Health is the dynamic balance of physical, mental, social, and existential well-being in adapting to conditions of life and the environment." Health is dynamic, continuous, multidimensional, distinct from function, and determined by balance and adaptation. This new definition has implications for research, policies, and practice, with particular relevance for health considered within a context of disability and chronic conditions.

What should we teach about disability? National consensus on disability competencies for health care education.

BACKGROUND: Health care providers are unprepared to meet the health needs of patients who have disabilities. Disability training is needed, yet there is little agreement about what should be taught. OBJECTIVE: Establish a national consensus on what healthcare providers across disciplines need to know to provide quality care to patients with all types of disabilities (e.g., mobility, sensory, developmental, mental health). METHODS: People with disabilities, disability advocates, family members of people with disabilities, disability and health professionals, and inter-disciplinary health educators systematically evaluated and provided feedback on a draft set of disability competencies. Based on this feedback, competencies were iteratively refined. RESULTS: After two waves of feedback, six competencies, 49 sub-competencies, and 10 principles and values emerged that addressed topics such as respect, person-centered care, and awareness of physical, attitudinal, and communication health care barriers. An overwhelming majority (89%) agreed or strongly agreed that the disability competencies reflected the core understandings needed to provide quality care for patients with disabilities, were relevant across disability types (85%), and across health care disciplines (96%). Averaging evaluative feedback across competencies, participants reported that the competencies were important (98%) and clear (96%). CONCLUSIONS: This consensus on what to teach is an important milestone in preparing a disability competent health care workforce. Future directions for research, training, and policy are discussed. When disability is included in health care education, the health care workforce will be prepared to deliver accessible, patient-centered, quality health care to patients with disabilities.