Indian immigrants' constructions of mental health and mental illness in the perinatal period: A qualitative study.

AIM: The aim of this study is to explore how immigrant women and men from India construct mental health and mental illness in the perinatal period. DESIGN: Qualitative interpretive design. METHODS: Data were collected by conducting in-depth interviews with 19 participants. Photo elicitation, free listing and pile sorting were used during the interviews. Purposive sampling was used, and data were collected in 2018 and 2019. Data were analysed using thematic analysis. FINDING/RESULTS: One major theme and three subthemes were identified. 'We do not talk about it' was the major theme and the subthemes: (1) 'living peacefully and feeling happy' described the views on mental health; (2) 'that's the elephant in the room still' captures how participants felt when talking about mental illness; and (3) 'why don't we talk about it' offers reasons why the Indian community does not talk about mental health and illness. CONCLUSION: The findings of this study have highlighted the importance of understanding the impact of immigration and being culturally sensitive when assessing mental health in the perinatal period. IMPACT: The findings of this study identify some of the reasons for non-disclosure of mental health issues by immigrants. Incorporating these findings during psychosocial assessment by health professionals in the perinatal period will help translate the cultural aspects into more effective communication. PATIENT OR PUBLIC CONTRIBUTION: Patient and public contribution to the study was provided by the Community Stakeholders Group; these were members of the immigrant community from India who had expertise in mental health. They contributed to the study design and the key terms and phrases for the free list used in interviews.

Experiences of coordinated care for people in the UK affected by rare diseases: cross-sectional survey of patients, carers, and healthcare professionals.

BACKGROUND: Poorly coordinated care can have major impacts on patients and families affected by rare conditions, with negative physical health, psychosocial and financial consequences. This study aimed to understand how care is coordinated for rare diseases in the United Kingdom. METHODS: We undertook a national survey in the UK involving 760 adults affected by rare diseases, 446 parents/carers of people affected by rare diseases, and 251 healthcare professionals who care for people affected by rare diseases. RESULTS: Findings suggested that a wide range of patients, parents and carers do not have coordinated care. For example, few participants reported having a care coordinator (12% patients, 14% parents/carers), attending a specialist centre (32% patients, 33% parents/carers) or having a care plan (10% patients, 44% parents/carers). A very small number of patients (2%) and parents/carers (5%) had access to all three-a care coordinator, specialist centre and care plan. Fifty four percent of patients and 33% of parents/carers reported access to none of these. On the other hand, a higher proportion of healthcare professionals reported that families with rare conditions had access to care coordinators (35%), specialist centres (60%) and care plans (40%). CONCLUSIONS: Care for families with rare conditions is generally not well coordinated in the UK, with findings indicating limited access to care coordinators, specialist centres and care plans. Better understanding of these issues can inform how care coordination might be improved and embrace the needs and preferences of patients and families affected by rare conditions.

Evaluation of the Patient with Nasal Obstruction.

Patients often present with a complaint of nasal blockage, either primarily, or in conjunction with aesthetic concerns. The evaluation of the patient with nasal obstruction involves a comprehensive history and a detailed physical examination. The nose is an organ in which form and function are inseparable, and as such, examination of the patient with nasal obstruction must focus not only the internal structures that may cause obstruction of the nasal airway, but also the external structure of the nose as it impacts nasal breathing. Detailed facial analysis and a systematic nasal examination will reveal details regarding nasal obstruction due to internal sources such as septal deviation, turbinate hypertrophy, or nasal lining abnormalities, and structural abnormalities such as nasal valve collapse or external nasal deformity. This approach, in categorizing each component of the nasal exam and its findings, allows the surgeon to formulate an appropriate treatment plan that emerges from the details of the examination.

A new mouse model of ATR-X syndrome carrying a common patient mutation exhibits neurological and morphological defects.

ATRX is a chromatin remodelling ATPase that is involved in transcriptional regulation, DNA damage repair and heterochromatin maintenance. It has been widely studied for its role in ALT-positive cancers, but its role in neurological function remains elusive. Hypomorphic mutations in the X-linked ATRX gene cause a rare form of intellectual disability combined with alpha-thalassemia called ATR-X syndrome in hemizygous males. Clinical features also include facial dysmorphism, microcephaly, short stature, musculoskeletal defects and genital abnormalities. As complete deletion of ATRX in mice results in early embryonic lethality, the field has largely relied on conditional knockout models to assess the role of ATRX in multiple tissues. Given that null alleles are not found in patients, a more patient-relevant model was needed. Here, we have produced and characterized the first patient mutation knock-in model of ATR-X syndrome, carrying the most common causative mutation, R246C. This is one of a cluster of missense mutations located in the chromatin-binding domain and disrupts its function. The knock-in mice recapitulate several aspects of the patient disorder, including craniofacial defects, microcephaly, reduced body size and impaired neurological function. They provide a powerful model for understanding the molecular mechanisms underlying ATR-X syndrome and testing potential therapeutic strategies.

Critical data at the crossroads: the National Health and Nutrition Examination Survey faces growing challenges.

NHANES needs urgent attention to ensure its future, which is facing emerging challenges associated with data collection, stagnant funding that has undercut innovation, and the increased call for granular data for subpopulations and groups at risk. The concerns do not rest merely on securing more funding but focus on the need for a constructive review of the survey to explore new approaches and identify appropriate change. This white paper, developed under the auspices of the ASN's Committee on Advocacy and Science Policy (CASP), is a call to the nutrition community to advocate for and support activities to prepare NHANES for future success in a changing nutrition world. Furthermore, because NHANES is much more than a nutrition survey and serves the needs of many in health fields and even commercial arenas, effective advocacy must be grounded in alliances among the survey's diverse stakeholders so that the full range of expertise and interests can engage. This article highlights the complicated nature of the survey along with key overarching challenges to underscore the importance of a measured, thoughtful, comprehensive, and collaborative approach to considering the future of NHANES. Starting-point questions are identified for the purposes of focusing dialog, discussion forums, and research. In particular, the CASP calls for a National Academies of Sciences, Engineering, and Medicine study on NHANES to articulate an actionable framework for NHANES going forward. With a well-informed and integrated set of goals and recommendations that could be provided by such a study, a secure future for NHANES is more readily achievable.

The experiences of new graduate nurses working in a pediatric setting: A qualitative systematic review.

OBJECTIVE: To synthesize the literature regarding the experiences of new graduate nurses working in a pediatric setting. BACKGROUND: The transition experiences of new graduate nurses can be stressful and challenging. Pediatric settings may cause additional stress due to the unique nature of children's nursing and its' environment. INCLUSION CRITERIA: Qualitative studies of any design and qualitative components of mixed method studies that explored the experiences of new graduate nurses in a pediatric setting were included in this review: neonatal intensive care units and special care nurseries were excluded. METHODS: The JBI meta-aggregation approach for synthesizing qualitative data was followed. Databases searched were CINAHL, MEDLINE (Ovid), APA PsycInfo, Scopus, PubMed Central, ERIC, and ProQuest Dissertations and Theses. Studies published between January 2000 and January 2022 inclusive were considered. RESULTS: 2229 records were screened, and nine studies selected. From the nine studies 203 findings were included, resulting in 19 categories and five synthesized findings. The synthesized findings related to support, developing identity and role transition, working conditions and environment, fear and uncertainty, and career and goal planning. CONCLUSIONS: New graduates in a pediatric setting required support that took account of their development needs with consistent preceptorship. Being considered part of a team and the support of other team members were important in developing identity as a new graduate nurse in a pediatric setting. Working conditions for the new graduate needed to be safe, and new graduates also felt fearful and uncertain when it came to their new accountability and responsibilities.

The Perioperative Quality Improvement Programme (PQIP patient study): protocol for a UK multicentre, prospective cohort study to measure quality of care and outcomes after major surgery.

INTRODUCTION: Major surgery accounts for a substantial proportion of health service activity, due not only to the primary procedure, but the longer-term health implications of poor short-term outcome. Data from small studies or from outside the UK indicate that rates of complications and failure to rescue vary between hospitals, as does compliance with best practice processes. Within the UK, there is currently no system for monitoring postoperative complications (other than short-term mortality) in major non-cardiac surgery. Further, there is variation between national audit programmes, in the emphasis placed on quality assurance versus quality improvement, and therefore the principles of measurement and reporting which are used to design such programmes. METHODS AND ANALYSIS: The PQIP patient study is a multi-centre prospective cohort study which recruits patients undergoing major surgery. Patient provide informed consent and contribute baseline and outcome data from their perspective using a suite of patient-reported outcome tools. Research and clinical staff complete data on patient risk factors and outcomes in-hospital, including two measures of complications. Longer-term outcome data are collected through patient feedback and linkage to national administrative datasets (mortality and readmissions). As well as providing a uniquely granular dataset for research, PQIP provides feedback to participating sites on their compliance with evidence-based processes and their patients' outcomes, with the aim of supporting local quality improvement. ETHICS AND DISSEMINATION: Ethical approval has been granted by the Health Research Authority in the UK. Dissemination of interim findings (non-inferential) will form a part of the improvement methodology and will be provided to participating centres at regular intervals, including near-real time feedback of key process measures. Inferential analyses will be published in the peer-reviewed literature, supported by a comprehensive multi-modal communications strategy including to patients, policy makers and academic audiences as well as clinicians.

A phase IB and randomised phase IIA trial of CApecitabine plus Radium-223 (Xofigo™) in breast cancer patients with BONe metastases: CARBON trial results.

Background: Approximately 70% of patients with metastatic breast cancer (MBC) develop bone metastases. Despite advances in systemic treatment options and the use of bone targeted agents in the management of bone metastases to reduce skeletal morbidity, there remains an unmet need for further treatment options. Radium-223 (Ra223) is an alpha-emitting radiopharmaceutical that is preferentially taken up into bone at sites of increased osteoblastic activity where it emits high-energy, short-range alpha-particles that could provide a targeted anti-tumour effect on bone metastases. Here we evaluate the safety, feasibility and efficacy findings of the combination of Ra223 with capecitabine chemotherapy in patients with MBC with bone involvement. Methods: CARBON is a multi-centre, open-label phase IB/IIA study evaluating the combination of Ra223 (55 kBq/kg day 1 given on 6 weekly schedule) and capecitabine (1000 mg/m2 bd days 4-17 every 21 days) in patients with bone metastases from MBC (± other disease sites). Other eligibility criteria included ECOG performance status 0-2, ≤2 lines of chemotherapy for MBC and current bisphosphonate or denosumab use for ≥ 6 weeks. The phase IB part of the trial (6 patients) was conducted to provide preliminary feasibility and safety of capecitabine + Ra223. Thereafter, 28 patients were randomised (2:1) to capecitabine + Ra223 or capecitabine alone to further characterise the safety profile and evaluate efficacy, the primary efficacy endpoint being the bone turnover marker (urinary n-telopeptide of type I collagen) change from baseline to end of cycle 5 and secondary endpoints of time to first symptomatic skeletal event, and disease progression at extra-skeletal and bone disease. Results: In addition to bone metastases, 10/23 [44%] and 13/23 [57%] capecitabine + Ra223 and 2/11 [18%] and 9/11 [82%] capecitabine alone patients had soft tissue and visceral disease sites respectively. More capecitabine + Ra223 patients had received prior chemotherapy for MBC: 11/23 [48%] vs 2/11 [18%]. The analysis populations comprise 34 patients (23 capecitabine + Ra223, 11 capecitabine); 2 patients randomised to capecitabine + Ra223 received capecitabine alone and are included in the capecitabine arm. Median number of cycles received was 8.5 in capecitabine + Ra223 (range 3-12) and 12 in the capecitabine arm (range 1-12). 94/95 prescribed Ra223 cycles were administered. No dose limiting toxicities were seen in phase IB and no patients developed grade ≥ III diarrhoea. Gastrointestinal, haematological and palmer-planter erthyrodysesthesia adverse events were similar in both arms. Although formal statistical comparisons were not made, changes in bone turnover markers, the times to extra-skeletal progression and bone disease progression, and the frequency of symptomatic skeletal events were similar across the two treatment arms. Conclusion: Capecitabine + Ra223 at the planned dose was safe and feasible in MBC patients with bone metastases. However, no efficacy signals were seen that might suggest greater efficacy of the combination over capecitabine alone clinically or biochemically.

Safety of tetanus, diphtheria, acellular pertussis (Tdap) vaccination during pregnancy.

The objective of this study was to evaluate the safety of prenatal tetanus, diphtheria, acellular pertussis (Tdap) vaccination. This cohort study was conducted among pregnant members at Kaiser Permanente Southern California (KPSC). The exposed cohort consisted of women who received Tdap vaccine on or after the 27th week of pregnancy between January 2018 and January 2019. The unexposed cohort consisted of matched women who were pregnant between January 2012 and December 2014 and were not vaccinated with any Tdap vaccine throughout their pregnancy. Maternal and infant characteristics and pre-specified endpoints were collected through automated data and review of the electronic health records. Unadjusted and adjusted relative risks (aRRs) with confidence intervals (CIs) were estimated by Poisson regression. Non-inferiority testing (i.e., to rule out a two-fold increase) was conducted for primary endpoints with adjustment for multiplicity. Superiority testing was conducted without multiplicity adjustment for secondary endpoints. The analysis consisted of 16,606 pairs of Tdap recipients and unexposed pregnant women. For the primary endpoints, the aRR for preeclampsia/eclampsia was 1.38 (98.75% CI:1.21-1.58) and the aRR for intrauterine infection was 1.28 (98.75% CI:1.12-1.47). These increases were consistent with the background increasing trend of these diagnoses among all pregnant women at KPSC since 2011, and the upper limit of the 98.75% CI of both aRRs did not exceed the pre-specified threshold of 2. No increased risks of small for gestational age (aRR = 1.04, 98.75% CI:0.94-1.16) or preterm delivery (aRR = 0.71, 98.75% CI:0.64-0.78) were observed. No evidence of increased risks for secondary endpoints, including poor fetal growth, preterm pre-labor rupture of membranes, stillbirth/fetal death, placental abruption, transfusion during delivery hospitalization, and neonatal death, was observed. Prenatal Tdap vaccination after the 27th week of pregnancy was not associated with increased risks of pre-specified maternal and infant outcomes, supporting the safety of Tdap vaccination during pregnancy.

Caregivers' Feeding Experiences and Support of Their Child with Cerebral Palsy.

Feeding difficulties are often reported in children with cerebral palsy (CP) and are associated with caregiver stress. This study explored the feeding experiences and support of caregivers with children who have CP. A qualitative approach was used where semi-structured telephone interviews were conducted and audio recorded. Thematic analysis was used to code and analyse the transcribed interview data from the eleven mothers that participated. Four major themes were identified from the data: Child-centred world, Making decisions, Knowing their child, and Seeking and receiving support. Caregivers knew their child's unique needs and made daily decisions around feeding based upon the child's feedback and changing condition. Family support was viewed as important, although the caregivers still reported feeling stressed. Health professional support varied from "amazing" to "frustrating", which contributed to the caregivers' stress. However, no single support strategy was appropriate as their needs or preferences varied. It is recommended that health professionals take an individualised partnership approach with caregivers and their child, with particular attention to those caregivers who lack a friend or family support and those who are physically isolated.

A Cross-sectional Survey of Enteral Feeding Tube Placement and Gastric Residual Aspiration Practices: Need for an Evidence-Based Clinical Practice Guideline.

BACKGROUND: Preterm infants routinely require enteral feeding via nasogastric or orogastric tubes as an alternative to oral feeding to meet their nutritional needs. Anecdotal evidence suggests variations in practice related to correct tube placement and assessment of feed intolerance. PURPOSE: To determine the current practices of enteral feeding tube placement confirmation and gastric residual (GR) aspiration of neonatal clinicians in Australia. METHODS: A cross-sectional online survey comprising 24 questions was distributed to nursing and medical health professionals working in Australian neonatal care units through 2 e-mail listservs made available by professional organizations. FINDINGS: The survey was completed by 129 clinicians. A single method was practiced by 50% of the clinicians in confirming tube placement, and most common practice was assessing the pH of GR aspirate. The majority of respondents (96%) reported that they relied on GR aspiration and clinical signs to determine feeding tolerance and subsequent decisions such as ceasing or decreasing feeds. However, the frequency of aspiration, the amount and color of aspirate considered to be normal/abnormal, and decisions on whether to replace gastric aspirate or whether aspiration should be performed during continuous tube feeding varied. IMPLICATION FOR PRACTICE: This study demonstrated considerable variability in clinical practice for enteral feeding tube placement confirmation and GR aspiration despite most respondents reporting using a unit-based clinical practice guideline. Our study findings highlight the need for not only developing evidence-based practice guidelines for safe and consistent clinical practice but also ensuring that these guidelines are followed by all clinicians. IMPLICATION FOR RESEARCH: Further research is needed to establish evidence-based methods both for enteral feeding tube placement confirmation and for the assessment of feeding intolerance during tube feeding. In addition, the reasons why evidence-based methods are not followed must be investigated.

A Standardized Method for Measurement of Elbow Kinesthesia.

Proprioception is an important component of controlled movement. The threshold to detection of passive movement (TDPM) is a commonly used method for quantifying the proprioceptive submodality of kinesthesia in research settings. The TDPM paradigm has been found to be valid and reliable; however, the equipment and methods used for TDPM vary between studies. In particular, the research laboratory apparatuses for producing passive movement of an extremity are often custom designed by individual laboratories or inaccessible due to high cost. There is a need for a standardized, valid, and reliable method for measuring TDPM using readily available equipment. The purpose of this protocol is to provide a standardized method for measurement of TDPM at the elbow that is economical, easy to administer, and that produces quantitative results for measurement purposes in research-based settings. This method was tested on 20 healthy adults without neurological impairment, and eight adults with chronic stroke. The results obtained suggest this method is a reliable way to quantify elbow TDPM in healthy adults, and provides initial support for validity. Researchers seeking a balance between equipment affordability and measurement precision are most likely to find this protocol of benefit.

Suppressor mutations in Mecp2-null mice implicate the DNA damage response in Rett syndrome pathology.

Mutations in X-linked methyl-CpG-binding protein 2 (MECP2) cause Rett syndrome (RTT). To identify functional pathways that could inform therapeutic entry points, we carried out a genetic screen for secondary mutations that improved phenotypes in Mecp2/Y mice after mutagenesis with N-ethyl-N-nitrosourea (ENU). Here, we report the isolation of 106 founder animals that show suppression of Mecp2-null traits from screening 3177 Mecp2/Y genomes. Whole-exome sequencing, genetic crosses, and association analysis identified 22 candidate genes. Additional lesions in these candidate genes or pathway components associate variant alleles with phenotypic improvement in 30 lines. A network analysis shows that 63% of the genes cluster into the functional categories of transcriptional repression, chromatin modification, or DNA repair, delineating a pathway relationship with MECP2. Many mutations lie in genes that modulate synaptic signaling or lipid homeostasis. Mutations in genes that function in the DNA damage response (DDR) also improve phenotypes in Mecp2/Y mice. Association analysis was successful in resolving combinatorial effects of multiple loci. One line, which carries a suppressor mutation in a gene required for cholesterol synthesis, Sqle, carries a second mutation in retinoblastoma binding protein 8, endonuclease (Rbbp8, also known as CtIP), which regulates a DDR choice in double-stranded break (DSB) repair. Cells from Mecp2/Y mice have increased DSBs, so this finding suggests that the balance between homology-directed repair and nonhomologous end joining is important for neuronal cells. In this and other lines, two suppressor mutations confer greater improvement than one alone, suggesting that combination therapies could be effective in RTT.

Parkinson's-adapted cognitive stimulation therapy: a pilot randomized controlled clinical trial.

Cognitive stimulation therapy (CST) is widely used with people with dementia, but there is no evidence of its efficacy in mild cognitive impairment or dementia in Parkinson's disease (PD-MCI; PDD) or dementia with Lewy bodies (DLB). We aimed to explore the impact of 'CST-PD', which is home-based, individualized CST adapted for this population. In a single-blind, randomized controlled exploratory pilot trial (RCT), we randomized 76 participant-dyads [PD-MCI (n = 15), PDD (n = 40), DLB (n = 21) and their care partners] to CST-PD or treatment as usual (TAU). CST-PD involves home-based cognitively stimulating and engaging activities delivered by a trained care partner. Exploratory outcomes at 12 weeks included cognition (Addenbrooke's Cognitive Evaluation; ACE-III), neuropsychiatric symptoms and function. In care partners, we assessed burden, stress and general health status. Relationship quality and quality of life were assessed in both dyad members. At 12 weeks, the ACE-III showed a nonstatistically significant improvement in the CST-PD group compared with the TAU group, although neuropsychiatric symptoms increased significantly in the former. In contrast, care partners' quality of life (d = 0.16) and relationship quality ('satisfaction', d = 0.01; 'positive interaction', d = 0.55) improved significantly in the CST-PD group, and care burden (d = 0.16) and stress (d = 0.05) were significantly lower. Qualitative findings in the CST-PD recipients revealed positive 'in the moment' responses to the intervention, supporting the quantitative results. In conclusion, care-partner-delivered CST-PD may improve a range of care-partner outcomes that are important in supporting home-based care. A full-scale follow-up RCT to evaluate clinical and cost effectiveness is warranted.

Parkinson's-adapted cognitive stimulation therapy: feasibility and acceptability in Lewy body spectrum disorders.

BACKGROUND: Drug-based therapeutic approaches for Parkinson's disease dementia (PDD) and dementia with Lewy bodies (DLB) are moderately effective and not always tolerated. Tailoring psychosocial approaches in PDD and DLB may offer additional support and improve outcomes. We adapted home-based, care partner-delivered Cognitive Stimulation Therapy (CST) for individuals with PDD or DLB and their care partners (CST-PD). OBJECTIVES: To evaluate the feasibility, acceptability, and tolerability of CST-PD. METHODS: This randomised controlled trial used mixed methods, including a process evaluation. People with PDD, DLB or mild cognitive impairment in PD (PD-MCI) and their care partners were randomised to 12 weeks of treatment as usual (TAU) or CST-PD. Outcomes were feasibility of the study conduct (i.e., recruitment, retention rate) and acceptability and tolerability of the intervention. Measures included rating scales, researcher field notes, therapy diaries, and exploratory clinical and care partner efficacy measures. RESULTS: The recruitment target was met with 76 consenting participant-dyads. Retention in both arms was high at over 70%. More than 90% of dyads undertook discrete sessions greater than 20 min duration, but the average number of sessions completed was lower than the recommended dose. Acceptability ratings (i.e., interest, motivation and sense of achievement) of the intervention were high. Participants reported no serious adverse events related to the intervention. CONCLUSIONS: The field of psychosocial interventions for PDD and DLB is newly emerging, and we demonstrated that this type of intervention is acceptable and well tolerated. Evaluating its clinical effectiveness in a full-scale randomized controlled clinical trial is warranted. TRIAL REGISTRATION NUMBER: The trial is a psychosocial intervention with an allocated ISRCTN number 11455062.

Teaching Residents Frontal Sinus Anatomy Using a Novel 3-Dimensional Conceptualization Planning Software-Based Module.

BACKGROUND: The Frontal Sinus Masterclass (FSMC) is an effective method for teaching frontal sinus anatomy. A third party developed new software using the same 3-dimensional building block concept. The authors sought to determine whether the use of the software for the educational module yielded similar results to the original FSMC, which used wooden blocks. METHODS: The study was performed at a sinus course for residents. A precourse test assessed the ability to decipher frontal sinus anatomy prior to the course. Computed tomography (CT) scans of the sinuses were evaluated in triplanar view, and participants attempted to reconstruct the anatomy using the new software. Subsequently, the course instructor explained the anatomy and showed a short corresponding surgical video of the frontal sinusotomy. Cases progressed in anatomical difficulty and inflammatory load. A postcourse test determined knowledge after the course. RESULTS: In sum, 50 residents completed the pre- and postcourse tests. Overall scores increased from 60.5% to 65.2% ( P = .004). Subanalysis also demonstrated improved ability to locate the frontal drainage pathway from 32.5% to 46% ( P = .011) and label the frontal recess cell structures from 64% to 67.6% ( P = .045). CONCLUSION: There is minimal literature on proven methods for teaching frontal sinus anatomy. Objectively, participants of the modified FSMC simulation training using new software improved their ability to recognize cells of the frontal recess on CT scans. They especially exhibited better localization of the frontal sinus drainage pathway. Subjectively, participants reported benefit from the course and felt they would be better surgeons.

Caregivers' experiences of feeding children with cerebral palsy: a systematic review protocol of qualitative evidence.

REVIEW QUESTION/OBJECTIVE: The overall objective of this systematic review is to identify, critically appraise and synthesize the literature regarding the feeding experiences of caregivers who care for children with cerebral palsy. The specific review question is: What are the experiences of caregivers feeding children with cerebral palsy?