A palliative care goals model for people with dementia and their family: Consensus achieved in an international Delphi study.

BACKGROUND: Advance care planning in dementia includes supporting the person and their family to consider important goals of care. International research reports the importance of psycho-social-spiritual aspects towards end of life. AIM: To develop a multidimensional international palliative care goals model in dementia for use in practice. DESIGN: International Delphi study integrating consensus and evidence from a meta-qualitative study. The Delphi panel rated statements about the model on a 5-point agreement scale. The criteria for consensus were pre-specified. SETTING/PARTICIPANTS: Seventeen researchers from eight countries developed an initial model, and 169 candidate panellists were invited to the international online Delphi study. RESULTS: Panellists (107; response 63.3%) resided in 33 countries. The model comprised four main care goals: (1) Comfort ensured; (2) Control over function maintained; (3) Identity protected and personhood respected and (4) Coping with grief and loss-person and caregiver supported. The model reflects how needs and care goals change over time with the progression of dementia, concluding with bereavement support. The first version of the model achieved a consensus after which it was slightly refined based on feedback. We did not achieve a consensus on adding a goal of life prolongation, and on use of the model by people with dementia and family themselves. CONCLUSION: A new palliative care goals model for people with dementia and their families includes relationship aspects for use by professionals and achieved a consensus among a panel with diverse cultural background. The position of life prolongation in relation to palliative care goals needs further research.

How does high socioeconomic status affect maternal and neonatal pregnancy outcomes? A population-based study among American women.

Objectives: The purpose of this study was to evaluate the effect of high SES on multiple pregnancy outcomes, while controlling for confounding factors. Methods: Using the Healthcare Cost and Utilization Project Nationwide Inpatient Sample (HCUP-NIS), the largest American medical database including 20 % of annual hospital admissions, we studied the years 2004-2014 inclusively. We conducted a population-based retrospective cohort study consisting of women from different median household income quartiles throughout the United States. Women in the highest household income quartile were compared to those in all other lower income quartiles combined. Chi-square and Fischer exact tests were used to compare demographic and baseline characteristics. Univariate and multivariate regression analyses were carried to adjust for confounding factors, including ethnicity, pre-existing conditions, smoking status, obesity, illicit drug use and insurance type. Results: Among 5,448,255 deliveries during the study period with income data, 1,218,989 deliveries were to women from the wealthiest median household income. These women were more likely to be older, Caucasian, and have private medical insurance (P < 0.05, all). They were less likely to smoke, have chronic hypertension, pre-gestational diabetes, and use illicit drugs (P < 0.05, all). They were less likely to develop complications including gestational hypertension (aOR 0.87 95 %CI 0.85-0.88), preeclampsia (aOR 0.88 95 %CI 0.86-0.89), eclampsia (aOR 0.81 95 %CI 0.66-0.99), gestational diabetes (aOR 0.91 95 %CI 0.89-0.92), preterm premature rupture of membranes (PPROM) (aOR 0.92 95 %CI 0.88-0.96), preterm birth (aOR 0.90 95 %CI 0.89-0.92), and placental abruption (aOR 0.89 95 %CI 0.85-0.93). They were less likely to have an intra-uterine fetal death (IUFD) (aOR 0.80 95 %CI 0.74-0.86), but more likely to deliver neonates with congenital anomalies (aOR 1.10 95 %CI 1.04-1.20). Conclusions: Higher SES predisposes to better pregnancy outcomes, even when controlled for confounding factors such as ethnicity and underlying baseline health status. Efforts are required in order to eliminate health disparities in pregnancy.

Perceptions and experiences of nursing students communicating with people living with dementia: The validation, emotion, reassure, activity (VERA) communication skills framework.

BACKGROUND: There is an increased risk with advancing age that degenerative conditions such as dementia will affect a person's capacity to communicate. Thus, there is increased possibility that nursing students will be caring for this client group and will need to have the skills to communicate effectively. The Validation, Emotion, Reassure, Activity (VERA) framework is a communication tool developed for this purpose. OBJECTIVES: This pilot study explored nursing students' perceptions and experiences of communicating with people with dementia incorporating the VERA communication skills framework. METHODS: Using a descriptive qualitative approach, second year undergraduate general nursing students were eligible for inclusion if they were assigned to complete their 4-week clinical placement in the designated research site and were willing to participate. Students allocated to the designated research site (n = 6) in semester 1 received standard communication skills as part of the undergraduate programme and students allocated (n = 10) in semester 2 received 2.5 h of additional communication skills based on the VERA framework. Data were analysed using framework analysis as described by Ritchie & Spencer. RESULTS: The findings showed that students in both groups had initial reservations about communicating with people living with dementia. They employed several strategies including nonverbal techniques, distraction, reminiscence and life story work. However, students who received the VERA communication training felt more prepared to engage in these strategies because of the VERA training. CONCLUSION: With increasing numbers of people with dementia accessing health care, it is crucial that future nursing staff are equipped to meet the specific care needs of this population; which includes effective communication. The VERA framework can be useful to structure communication for nursing students. IMPLICATION FOR PRACTICE: The VERA training may be considered a useful framework for increasing undergraduate nursing students' knowledge and confidence in advance of clinical placements in older person's services. Nursing staff should continue to support students on clinical placements which involve caring for people with dementia and be cognisant of the trepidation students may have when first meeting this client group.

Experiences of undergraduate nursing students who worked clinically during the COVID-19 pandemic.

AIM: This study explored the experiences of undergraduate nursing students who worked clinically during the COVID-19 pandemic in Irish healthcare settings. DESIGN: A qualitative descriptive approach was employed. METHODS: Online focus group interviews were used to collect data from general nursing students (N = 47) between February and April 2021. Data were analysed using thematic analysis. RESULTS: Descriptive thematic analysis of the data revealed five themes; changes in care delivery, changes in communication and relationships with the patient, an emotionally charged work atmosphere, coping strategies during the pandemic and student learning specific to COVID-19. Challenges such as an increased workload, fear of contracting the virus and taking on novel and additional roles were revealed. Students remained undeterred, and despite the many challenges faced, they largely viewed their experiences as a source of personal and professional growth, and benefitted from the learning opportunities afforded to them.

A Randomized, Double-Blind, Biomarker-Selected, Phase II Clinical Trial of Maintenance Poly ADP-Ribose Polymerase Inhibition With Rucaparib Following Chemotherapy for Metastatic Urothelial Carcinoma.

PURPOSE: A DNA repair deficiency (DRD) phenotype exists within a subset of metastatic urothelial carcinomas (mUC) predicting benefit from platinum-based chemotherapy. We tested switch maintenance therapy with the poly ADP-ribose polymerase inhibitor rucaparib, following chemotherapy, for DRD biomarker-positive mUC. METHODS: DRD biomarker-positive mUC patients, within 10 weeks of chemotherapy, and without cancer progression, were randomly assigned (1:1) to maintenance rucaparib 600 mg twice a day orally, or placebo, until disease progression. The primary end point was progression-free survival (PFS). Statistical analysis targeted a hazard ratio of 0.5 with a 20% one-sided α for this signal-seeking trial. PFS (RECIST 1.1) was compared between trial arms, by intention to treat, within a Cox model. RESULTS: Out of 248 patients, 74 (29.8%) were DRD biomarker-positive and 40 were randomly assigned. A total of 12 (60%) and 20 (100%) PFS events occurred in the rucaparib and placebo arms, respectively (median follow-up was 94.6 weeks in those still alive). Median PFS was 35.3 weeks (80% CI, 11.7 to 35.6) with rucaparib and 15.1 weeks (80% CI, 11.9 to 22.6) with placebo (hazard ratio, 0.53; 80% CI, 0.30 to 0.92; one-sided P = .07). In the safety population (n = 39) treatment-related adverse events were mostly low grade. Patients received a median duration of 10 rucaparib or six placebo cycles on treatment. Treatment-related adverse events (all grades) of fatigue (63.2% v 30.0%), nausea (36.8% v 5.0%), rash (21.1% v 0%), and raised alanine aminotransferase (57.9% v 10%) were more common with rucaparib. CONCLUSION: Maintenance rucaparib, following platinum-based chemotherapy, extended PFS in DRD biomarker-selected patients with mUC and was tolerable. Further investigation of poly ADP-ribose polymerase inhibition in selected patients with mUC is warranted.

Cross-cultural conceptualization of a good end of life with dementia: a qualitative study.

BACKGROUND: Research on the nature of a "good death" has mostly focused on dying with cancer and other life-limiting diseases, but less so on dementia. Conceptualizing common cross-cultural themes regarding a good end of life in dementia will enable developing international care models. METHODS: We combined published qualitative studies about end of life with dementia, focus group and individual interviews with the researchers, and video-conferencing and continuous email discussions. The interviews were audio-recorded and transcribed verbatim. The data were analyzed thematically, and the researchers developed common themes referring to their original studies. RESULTS: Fourteen qualitative researchers representing 14 cross-cultural studies covering qualitative data of 121 people with dementia and 292 family caregivers. The researchers and data were from eight countries UK, The Netherlands, Japan, Portugal, Germany, Canada, Brazil, and Ireland. Three focus groups, five individual interviews, and video-conferencing were conducted and feedback on multiple iterations was gained by 190 emails between May 2019 and April 2020 until consensus was achieved. Nine cross-culturally common themes emerged from the discussions and shared interpretation of the data of persons with dementia and family caregivers. Three represent basic needs: "Pain and Symptoms Controlled," "Being Provided Basic Care," and "A Place like Home." Other themes were "Having Preferences Met," "Receiving Respect as a Person," "Care for Caregivers," "Identity Being Preserved," "Being Connected," and "Satisfaction with Life and Spiritual Well-being." "Care for Caregivers" showed the greatest difference in emphasis across cultures. Good relationships were essential in all themes. CONCLUSIONS: The common cross-cultural themes comprise a framework underpinned by value placed on personhood and dignity, emphasizing that interdependency through relationships is essential to promote a good end of life with dementia. These themes and valuing the importance of relationships as central to connecting the themes could support care planning and further development of a dementia palliative care model. TRIAL REGISTRATION: The Graduate School and Faculty of Medicine Kyoto University (R1924-1).

Pregnancy outcomes in women with Ehlers-Danlos Syndrome.

PURPOSE: Ehlers-Danlos Syndrome (EDS) is an inherited connective tissue disorder caused by abnormal collagen synthesis. Little is known about its effects on pregnancy. The purpose of this study was to evaluate the pregnancy outcomes in women with EDS. MATERIALS AND METHODS: We conducted a population-based retrospective cohort study using the Healthcare Cost and Utilization Project Nationwide Inpatient Sample database from the United States. The study included women who delivered between 1999 and 2014. We measured the prevalence of EDS over time, and compared the baseline, obstetrical, and neonatal outcomes among women with EDS to the general obstetrical population without EDS. Unconditional logistic regression models were used to calculate the adjusted effect of EDS on maternal and neonatal outcomes. RESULTS: The overall prevalence of EDS in pregnancy was 7 per 100,000 births, with the trend increasing over the 16 year study period (p < .0001). Women with EDS were more likely to be Caucasian, belong to a higher income quartile, and smoke. Pregnancies in women with EDS were associated with prematurity, 1.47 (1.18-1.82), cervical incompetence, 3.11 (1.99-4.85), antepartum hemorrhage, 1.71 (1.16-2.50), placenta previa, 2.26 (1.35-3.77) and maternal death, 9.04 (1.27-64.27). Pregnant women with EDS were more likely to be delivered by cesarean section, 1.55 (1.36-1.76), have longer postpartum stays (>7 days), 2.82 (2.08-3.85), and have a neonate with intra-uterine growth restriction, 1.81 (1.29-2.54). CONCLUSIONS: EDS in pregnancy is a high-risk condition with increased maternal morbidity and mortality, as well as newborn morbidity. Consideration should be given to prematurity preventative measures and high-risk pregnancy consultation.

Maternal and neonatal outcomes among pregnant women with myasthenia gravis.

Objectives Myasthenia gravis (MG) is an autoimmune disease affecting the neuromuscular junction marked by weakness and fatiguability of skeletal muscle. MG has an unpredictable course in pregnancy. Our purpose was to evaluate the effect of MG on maternal and neonatal outcomes. Methods Using the United States' Healthcare Cost and Utilization Project Nationwide Inpatient Sample from 2005 to 2015, we conducted a retrospective cohort study consisting of women who delivered during that period. Multivariate logistic regression models, adjusted for baseline maternal demographics and comorbidities, were used to compare maternal and neonatal outcomes among pregnancies in women with and without MG. Results During the study period, 974 deliveries were to women diagnosed with MG. Women with MG were more likely to be older, African American, obese, have Medicare insurance and be discharged from an urban teaching hospital. Women with MG were also more likely to have chronic hypertension, pre-gestational diabetes, hypothyroidism, and chronic steroid use. Women with MG were at greater risk for acute respiratory failure (OR 13.7, 95% CI 8.9-21.2) and increased length of hospital stay (OR 2.5, 95% CI 1.9-3.3). No significant difference was observed in the risk of preterm premature rupture of membranes, caesarean section or instrumental vaginal delivery. Neonates of women with MG were more likely to be premature (OR 1.4, 95% CI 1.2-1.8). Conclusions MG in pregnancy is a high-risk condition associated with greater risk of maternal respiratory failure and preterm birth. Management in a tertiary care center with obstetrical, neurological, anesthesia and neonatology collaboration is recommended.

Ludwig's Angina in Pregnancy: A Case Report.

BACKGROUND: Physiologic changes in pregnancy may predispose pregnant women to oral health problems. However, most women are not counselled on oral health during pregnancy. Lack of proper oral health care predisposes pregnant women to odontogenic infections, which can lead to severe complications. CASE: A 34-year-old multiparous woman presented at 400 weeks gestation with a 3-day history of severe, progressive neck swelling, jaw pain, and trismus. She was diagnosed with Ludwig's angina secondary to an untreated dental cavity. She required emergency fiberoptic intubation to secure her airway, urgent delivery via cesarean section, and subsequent surgical drainage performed by otolaryngology. CONCLUSION: Ludwig's angina during pregnancy is associated with severe morbidity. Dental care should not be denied or postponed due to pregnancy, and dental infections should be treated promptly. Health care providers should counsel women on the importance of maintaining good oral health during pregnancy.

Sleep State Modulates Resting-State Functional Connectivity in Neonates.

The spontaneous cerebral activity that gives rise to resting-state networks (RSNs) has been extensively studied in infants in recent years. However, the influence of sleep state on the presence of observable RSNs has yet to be formally investigated in the infant population, despite evidence that sleep modulates resting-state functional connectivity in adults. This effect could be extremely important, as most infant neuroimaging studies rely on the neonate to remain asleep throughout data acquisition. In this study, we combine functional near-infrared spectroscopy with electroencephalography to simultaneously monitor sleep state and investigate RSNs in a cohort of healthy term born neonates. During active sleep (AS) and quiet sleep (QS) our newborn neonates show functional connectivity patterns spatially consistent with previously reported RSN structures. Our three independent functional connectivity analyses revealed stronger interhemispheric connectivity during AS than during QS. In turn, within hemisphere short-range functional connectivity seems to be enhanced during QS. These findings underline the importance of sleep state monitoring in the investigation of RSNs.

Using a continuum model to decipher the mechanics of embryonic tissue spreading from time-lapse image sequences: An approximate Bayesian computation approach.

Advanced imaging techniques generate large datasets capable of describing the structure and kinematics of tissue spreading in embryonic development, wound healing, and the progression of many diseases. These datasets can be integrated with mathematical models to infer biomechanical properties of the system, typically identifying an optimal set of parameters for an individual experiment. However, these methods offer little information on the robustness of the fit and are generally ill-suited for statistical tests of multiple experiments. To overcome this limitation and enable efficient use of large datasets in a rigorous experimental design, we use the approximate Bayesian computation rejection algorithm to construct probability density distributions that estimate model parameters for a defined theoretical model and set of experimental data. Here, we demonstrate this method with a 2D Eulerian continuum mechanical model of spreading embryonic tissue. The model is tightly integrated with quantitative image analysis of different sized embryonic tissue explants spreading on extracellular matrix (ECM) and is regulated by a small set of parameters including forces on the free edge, tissue stiffness, strength of cell-ECM adhesions, and active cell shape changes. We find statistically significant trends in key parameters that vary with initial size of the explant, e.g., for larger explants cell-ECM adhesion forces are weaker and free edge forces are stronger. Furthermore, we demonstrate that estimated parameters for one explant can be used to predict the behavior of other similarly sized explants. These predictive methods can be used to guide further experiments to better understand how collective cell migration is regulated during development.

Diffuse optical tomography for the detection of perinatal stroke at the cot side: a pilot study.

BACKGROUND: Perinatal stroke is a potentially debilitating injury, often under-diagnosed in the neonatal period. We conducted a pilot study investigating the role of the portable, non-invasive brain monitoring technique, diffuse optical tomography (DOT), as an early detection tool for infants with perinatal stroke. METHODS: Four stroke-affected infants were scanned with a DOT system within the first 3 days of life and compared to four healthy control subjects. Spectral power, correlation, and phase lag between interhemispheric low frequency (0.0055-0.3 Hz) hemoglobin signals were assessed. Optical data analyses were conducted with and without magnetic resonance imaging (MRI)-guided stroke localization to assess the efficacy of DOT when used without stroke anatomical information. RESULTS: Interhemispheric correlations of both oxyhemoglobin and deoxyhemoglobin concentration were significantly reduced in the stroke-affected group within the very low (0.0055-0.0095 Hz) and resting state (0.01-0.08 Hz) frequencies (p < 0.003). There were no interhemispheric differences for spectral power. These results were observed even without MRI stroke localization. CONCLUSION: This suggests that DOT and correlation-based analyses in the low-frequency range can potentially aid the early detection of perinatal stroke, prior to MRI acquisition. Additional methodological advances are required to increase the sensitivity and specificity of this technique.

A spread spectrum approach to time-domain near-infrared diffuse optical imaging using inexpensive optical transceiver modules.

We introduce a compact time-domain system for near-infrared spectroscopy using a spread spectrum technique. The proof-of-concept single channel instrument utilises a low-cost commercially available optical transceiver module as a light source, controlled by a Kintex 7 field programmable gate array (FPGA). The FPGA modulates the optical transceiver with maximum-length sequences at line rates up to 10Gb/s, allowing us to achieve an instrument response function with full width at half maximum under 600ps. The instrument is characterised through a set of detailed phantom measurements as well as proof-of-concept in vivo measurements, demonstrating performance comparable with conventional pulsed time-domain near-infrared spectroscopy systems.

Endometrial Biopsy in an Outpatient Gynaecological Setting: Overinvestigation.

OBJECTIVE: We reviewed the indications for endometrial biopsy at the general gynaecology outpatient clinic of the Université de Montréal Hospital Center and measured their compliance with the Society of Obstetricians and Gynaecologists of Canada and other international guidelines. METHODS: Three hundred and seventy-one files of patients who had an endometrial biopsy between January and October 2015 were reviewed. Indication for endometrial biopsy and pathology results were noted. Files were separated into four categories. RESULTS: In the postmenopausal bleeding category, all files complied with the SOGC. We found hyperplasia or neoplasia in 13% of patients. In the asymptomatic endometrial thickening category, 9% of the files did not show sufficient indication for biopsy. None of the patients presented hyperplasia or neoplasia. In the abnormal uterine bleeding (AUB) - under 41 years old category, there was no indication for biopsy in 23% of the files. We found hyperplasia or neoplasia in 13% of patients, but only in patients with an indication for biopsy. In patients with AUB - over 40, non-compliance with SOGC was 3%. But according to international guidelines, 42% of patients with AUB between 41 and 45 years old did not have an indication for biopsy and none showed hyperplasia or neoplasia. CONCLUSION: We demonstrated clinically significant overinvestigation in patients with AUB. Indications should be reviewed carefully before performing an endometrial biopsy in women under 41. In addition, the value of endometrial biopsies in patients between 41 and 45 years old with menorrhagia and no additional risk factor should be reevaluated.

Geometrically complex 3D-printed phantoms for diffuse optical imaging.

Tissue-equivalent phantoms that mimic the optical properties of human and animal tissues are commonly used in diffuse optical imaging research to characterize instrumentation or evaluate an image reconstruction method. Although many recipes have been produced for generating solid phantoms with specified absorption and transport scattering coefficients at visible and near-infrared wavelengths, the construction methods are generally time-consuming and are unable to create complex geometries. We present a method of generating phantoms using a standard 3D printer. A simple recipe was devised which enables printed phantoms to be produced with precisely known optical properties. To illustrate the capability of the method, we describe the creation of an anatomically accurate, tissue-equivalent premature infant head optical phantom with a hollow brain space based on MRI atlas data. A diffuse optical image of the phantom is acquired when a high contrast target is inserted into the hollow space filled with an aqueous scattering solution.

Functional imaging of the human brain using a modular, fibre-less, high-density diffuse optical tomography system.

We present the first three-dimensional, functional images of the human brain to be obtained using a fibre-less, high-density diffuse optical tomography system. Our technology consists of independent, miniaturized, silicone-encapsulated DOT modules that can be placed directly on the scalp. Four of these modules were arranged to provide up to 128, dual-wavelength measurement channels over a scalp area of approximately 60 × 65 mm2. Using a series of motor-cortex stimulation experiments, we demonstrate that this system can obtain high-quality, continuous-wave measurements at source-detector separations ranging from 14 to 55 mm in adults, in the presence of hair. We identify robust haemodynamic response functions in 5 out of 5 subjects, and present diffuse optical tomography images that depict functional haemodynamic responses that are well-localized in all three dimensions at both the individual and group levels. This prototype modular system paves the way for a new generation of wearable, wireless, high-density optical neuroimaging technologies.

Sensitive Interviewing in Qualitative Research.

In this paper we focus on important considerations when planning and conducting qualitative interviews on sensitive topics. Drawing on experiences of conducting interviews with dementia caregivers, a framework of essential elements in qualitative interviewing was developed to emphasize study participants' needs while also providing guidance for researchers. Starting with a definition of sensitive research, the framework includes preparing for interviews, interacting with gatekeepers of vulnerable groups, planning for interview timing, and location, building relationships and conducting therapeutic interactions, protecting ethically vulnerable participants, and planning for disengagement. This framework has the potential to improve the effectiveness of sensitive interviewing with vulnerable groups. © 2016 Wiley Periodicals, Inc.

Hemodynamic response to burst-suppressed and discontinuous electroencephalography activity in infants with hypoxic ischemic encephalopathy.

Burst suppression (BS) is an electroencephalographic state associated with a profound inactivation of the brain. BS and pathological discontinuous electroencephalography (EEG) are often observed in term-age infants with neurological injury and can be indicative of a poor outcome and lifelong disability. Little is known about the neurophysiological mechanisms of BS or how the condition relates to the functional state of the neonatal brain. We used simultaneous EEG and diffuse optical tomography (DOT) to investigate whether bursts of EEG activity in infants with hypoxic ischemic encephalopathy are associated with an observable cerebral hemodynamic response. We were able to identify significant changes in concentration of both oxy and deoxyhemoglobin that are temporally correlated with EEG bursts and present a relatively consistent morphology across six infants. Furthermore, DOT reveals patient-specific spatial distributions of this hemodynamic response that may be indicative of a complex pattern of cortical activation underlying discontinuous EEG activity that is not readily apparent in scalp EEG.

Errata: Hemodynamic response to burst-suppressed and discontinuous electroencephalography activity in infants with hypoxic ischemic encephalopathy.

[This corrects the article DOI: 10.1117/1.NPh.3.3.031408.].