Living with multimorbidity: A qualitative exploration of shared experiences of patients, family caregivers, and healthcare professionals in managing symptoms in the United States.

AIMS: To elicit experiences of patients, family caregivers, and healthcare professionals in intermediate care units (IMCUs) in an academic medical centre in Baltimore, MD related to the challenges and intricacies of multimorbidity management to inform development of a multimorbidity symptom management toolkit. DESIGN: Experience-based co-design. METHODS: Between July and October 2021, patients aged 55 years and older with multimorbidity admitted to IMCUs at an academic medical centre in Baltimore, Maryland, USA were recruited and interviewed in person. Interdisciplinary healthcare professionals working in the IMCU were interviewed virtually. Participants were asked questions about their role in recognizing and treating symptoms, factors affecting the quality of life, symptom burden and trajectory over time, and strategies that have and have not worked for managing symptoms. An inductive thematic analysis approach was used for analysis. RESULTS: Twenty-three interviews were conducted: 9 patients, 2 family caregivers, and 12 healthcare professionals. Patients' mean age was 67.5 (±6.5) years, over half (n = 5) were Black or Hispanic, and the average number of comorbidities was 3.67. Five major themes that affect symptom management emerged: (1) the patient-provider relationship; (2) open and honest communication; (3) accessibility of resources during hospitalization and at discharge; (4) caregiver support, training, and education; and (5) care coordination and follow-up care. CONCLUSION: Patients, caregivers, and healthcare professionals often have similar goals but different priorities for multimorbidity management. It is imperative to identify shared priorities and target holistic interventions that consider patient and caregiver experiences to improve outcomes. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE AND IMPACT: This paper addresses the paucity of research related to the shared experience of disease trajectory and symptom management for people living with multimorbidity. We found that patients, caregivers, and healthcare professionals often have similar goals but different care and communication priorities. Understanding differing priorities will help better design interventions to support symptom management so people with multimorbidity can have the best possible quality of life. REPORTING METHOD: We have adhered to the Consolidated Criteria for Reporting Qualitative Studies (COREQ) guidelines in our reporting. PATIENT OR PUBLIC CONTRIBUTION: This study has been designed and implemented with patient and public involvement throughout the process, including community advisory board engagement in the project proposal phase and interview guide development, and member checking in the data collection and analysis phases. The method we chose, experience-based co-design, emphasizes the importance of engaging members of a community to act as experts in their own life challenges. In the coming phases of the study, the public will be involved in developing and testing a new intervention, informed by these qualitative interviews and co-design events, to support symptom management for people with multimorbidity.

The importance of family support to engage and retain girls in male dominated action sports. A qualitative study of young people's perspectives.

ISSUE ADDRESSED: Social support is positively correlated with physical activity (PA), especially amongst girls, but is underexplored in male-dominated action sports (e.g., mountain biking, skateboarding and surfing). This study explored family level social support needs and experiences of girls and boys in three action sports. METHOD: Aspiring, current or former Australian adolescent (12-18 years; girls n = 25; boys n = 17) mountain bikers, skateboarders and/or surfers were individually interviewed (telephone/Skype) in 2018/2020. A socio-ecological framework guided the semi-structured interview schedule. Audio-recordings were transcribed verbatim and data analysed thematically using a constant comparative approach. RESULTS: Family level social support was highly influential in young people's participation in action sports, with its absence a common reason for no or discontinued engagement amongst girls. Parents and siblings were the main social support providers with extended family (e.g., grandparents, aunts/uncles, cousins) also notable. Participation (current/past/co-) was the main social support type followed by emotional (e.g., encouragement), instrumental (e.g., transport, equipment/funding) and informational (e.g., coaching) support. Girls were inspired/encouraged by brothers but boys were not inspired/encouraged by sisters; boys and girls co-participated with both parents but co-participating and being inspired by fathers was most common, especially amongst girls; fathers were more commonly the main transport provider if they co-participated with their child; fathers mostly provided initial coaching; only boys were taught equipment maintenance by parents. CONCLUSIONS AND SO WHAT: Sport-related organisations/groups have numerous opportunities to improve girls' representation in action sports by fostering family level social support through various means. Intervention strategies should be tailored to account for gendered participation differences.

Profiling the Longitudinal Development of Babbling in Infants with Cerebral Palsy: Validation of the Infant Monitor of Vocal Production (IMP) Using the Stark Assessment of Early Vocal Development-Revised (SAEVD-R).

AIM: We compared early vocal development in children "at risk" for cerebral palsy (CP) with typically developing (TD) infants aged 6 to 15 months using the SAEVD-R, investigating potential pre-linguistic markers of communication impairment. Additionally, we sought to examine the agreement between the SAEVD-R and IMP, which uses parent report, in identifying departure from typical vocal development in at-risk infants. METHOD: Utilising a longitudinal cohort study, >10,000 vocalisations of 33 infants (15 at risk for CP and 18 TD) were assessed at 6, 9, 12, and 15 months using the SAEVD-R. Generalised linear mixed models (GLMMs) compared groups, and Spearman correlations explored IMP ceiling scores and SAEVD-R measures. RESULTS: At 6 months, both TD and CP groups reached SAEVD-R vocalisation level 3 (expansion). By 9 months, 51% of TD infants progressed to advanced babbling (levels 4 and 5), while 80% of at-risk infants remained at level 3. At 12 and 15 months, over 90% of TD children advanced, compared to 67% at 12 months and 53% at 15 months for at-risk infants, who stayed at the pre-canonical stage. Strong correlations were found between IMP scores and vocalisation levels at 9 and 12 months. Remaining at the pre-canonical stage at 12 months correlated with delayed vocal development as per IMP scores. INTERPRETATION: TD infants achieved higher SAEVD-R levels than at-risk infants. At 12 months, IMP scores effectively identified infants with speech-like vocalisation difficulties, demonstrating its clinical utility in identifying atypical vocal development in infants at risk for CP.

Cochlear implantation impact on health service utilisation and social outcomes: a systematic review.

BACKGROUND: Hearing loss can have a negative impact on individuals' health and engagement with social activities. Integrated approaches that tackle barriers and social outcomes could mitigate some of these effects for cochlear implants (CI) users. This review aims to synthesise the evidence of the impact of a CI on adults' health service utilisation and social outcomes. METHODS: Five databases (MEDLINE, Scopus, ERIC, CINAHL and PsychINFO) were searched from 1st January 2000 to 16 January 2023 and May 2023. Articles that reported on health service utilisation or social outcomes post-CI in adults aged ≥ 18 years were included. Health service utilisation includes hospital admissions, emergency department (ED) presentations, general practitioner (GP) visits, CI revision surgery and pharmaceutical use. Social outcomes include education, autonomy, social participation, training, disability, social housing, social welfare benefits, occupation, employment, income level, anxiety, depression, quality of life (QoL), communication and cognition. Searched articles were screened in two stages ̶̶̶ by going through the title and abstract then full text. Information extracted from the included studies was narratively synthesised. RESULTS: There were 44 studies included in this review, with 20 (45.5%) cohort studies, 18 (40.9%) cross-sectional and six (13.6%) qualitative studies. Nine studies (20.5%) reported on health service utilisation and 35 (79.5%) on social outcomes. Five out of nine studies showed benefits of CI in improving adults' health service utilisation including reduced use of prescription medication, reduced number of surgical and audiological visits. Most of the studies 27 (77.1%) revealed improvements for at least one social outcome, such as work or employment 18 (85.7%), social participation 14 (93.3%), autonomy 8 (88.9%), education (all nine studies), perceived hearing disability (five out of six studies) and income (all three studies) post-CI. None of the included studies had a low risk of bias. CONCLUSIONS: This review identified beneficial impacts of CI in improving adults' health service utilisation and social outcomes. Improvement in hearing enhanced social interactions and working lives. There is a need for large scale, well-designed epidemiological studies examining health and social outcomes post-CI.

ARCHS: adult recipients of cochlear implants: health and social long-term outcomes-a state-specific and national population-based retrospective cohort study protocol.

INTRODUCTION: While the majority of adults with severe-to-profound hearing loss and poor speech perception outcomes with hearing aids benefit from receiving a cochlear implant, the long-term health and social benefits for implant recipients are yet to be explored. The objective of the ARCHS research is to provide a better understanding of the health and social factors that play a role in the lives of adults with a cochlear implant up to 10 years after the procedure. METHOD AND ANALYSIS: This research will involve conducting two retrospective cohort studies of adults aged ≥18 years who received a cochlear implant during 2011-2021 using linked administrative data first within New South Wales (NSW) and second Australia-wide. It will examine health service use and compare health and social outcomes for younger (18-64 years) and older (≥65 years) cochlear implant recipients. ETHICS AND DISSEMINATION: Ethical approval was received from the NSW Population Health Services Research Ethics Committee for the NSW cohort study (Reference: 2022/ETH00382/2022.07) and from the Macquarie University ethics committee for the national cohort study (Reference: 520221151437084). Research findings will be published in peer-reviewed journals and presented at scientific conferences.

Male allyship in institutional STEMM gender equity initiatives.

This article examines men's involvement in an institutional gender equity award scheme and how their self-concept as allies develops over time. It draws specifically on a subset of qualitative data from the four men participating in a study involving in-depth interviews with university staff involved in the self-assessment team of one Australian institution's Science in Australia Gender Equality (SAGE) Athena SWAN pilot. Data related to the men's experiences is the article's focus. Key themes from the data include: 1) men's motivations for engagement; 2) men's self-understandings as 'champions for change' 3) the barriers/risks associated with male championship; and 4) men's evolving perceptions and critiques of the male champions model. Findings show that men demonstrated personal growth and increased awareness through their participation in the pilot. Yet, their frustration with how equity and diversity was managed in their organisational context highlights pitfalls in the concept of a male 'champion'. This article provides timely guidance for institutions seeking to engage allies in gender equity initiatives.

Relative Validity and Reproducibility of a Food Frequency Questionnaire to Assess Nutrients and Food Groups of Relevance to the Gut Microbiota in Young Children.

Dietary fiber is an important nutrient for the gut microbiota, with different fiber fractions having different effects. The aim of this study was to determine the relative validity and reproducibility of a food frequency questionnaire (EAT5 FFQ) for measuring intake of fiber, and low and high fiber foods, in studies examining diet and gut microbiota in young children. One hundred parents of 5-year old children completed the 123-item EAT5 FFQ on two occasions four weeks apart. A 3-day weighed diet record (WDR) was completed on non-consecutive days between FFQ appointments. Mean correlations between the (randomly chosen) FFQ and WDR were acceptable for nutrient and food group intakes (r = 0.34 and r = 0.41 respectively). Gross misclassification was below chance (12.5%) for quartiles of nutrient (mean 5.7%) and food group (mean 5.1%) intake. 'Absolute values for surrogate categories' suggested the FFQ clearly differentiated between highest and lowest quartiles for all nutrients and food groups tested. Mean correlations between repeat administrations of the FFQ suggested very good reproducibility for nutrients (r = 0.83) and food groups (r = 0.80). The EAT5 FFQ appears to be an appropriate tool for investigating the intake of nutrients and food groups of relevance to the gut microbiota, and is the first FFQ validated to measure total, soluble and insoluble non-starch polysaccharide intakes in young children.

Exploring the Functional Impact of Childhood Vision Impairment: An e-Delphi Study.

The principles of the World Health Organization's International Classification of Function, Disability and Health have been embraced globally as a framework to support people with disability. This framework recognizes the functional needs of a person, as well as their medical diagnosis. However, the challenge of assessing the functional impact of disability to determine a person's needs and eligibility for support remains an issue. One example is that of childhood vision impairment, where a child's eligibility is often gauged from their visual performance in a clinical environment, a setting that is far removed from the child's real-world environment. Such clinical environments fail to reveal those factors that have a functional impact and affect the child's continuous visual function in their everyday situation. To examine this issue a three round modified e-Delphi technique was applied to explore the functional impact of childhood vision impairment. A panel of experienced Australian orthoptists and specialist teachers in vision impairment was convened, and the recently revised vision classifications in the World Health Organization International Statistical Classification of Diseases and Health Related Problems Version 11 were reviewed and modified for their application to children. This paper describes the e-Delphi technique and the major study outcomes including the modifications proposed by the study's participants, and the emerging paradigm that progresses an understanding of the functional impact of childhood vision impairment.

First Nation Elders' perspectives on healthy ageing in NSW, Australia.

OBJECTIVES: Healthy ageing has been unattainable for many of Australia's First Nation people, driven by an earlier onset of chronic disease when compared to the general Australian population. Our objective was to examine the perspectives of Australian First Nation people about healthy ageing. METHODS: We used a conversational method to gather knowledge from older First Nation people from established communities in New South Wales, Australia. Discussions were audio recorded and transcribed and analysed using an Indigenous research standpoint methodology. Eight yarning circles were held in six locations with 76 participants aged 45 years and over. RESULTS: Key issues around healthy ageing were identified; particularly, what the impact of chronic disease means to individuals. Study participants reported that healthy ageing is essential to continue to share knowledge of their history and culture. CONCLUSION: This article highlights the need for culturally appropriate healthy ageing programs addressing issues related to chronic disease among First Nation communities. Implications for public health: Research into what constitutes healthy ageing for older First Nation people is necessary for the development of culturally appropriate chronic disease interventions.

Using the Theory of Constraints to resolve long-standing resource and service issues in a large public hospital.

Public health care providers typically struggle with the need to meet demand for services, within a limited budget. This paper describes an analysis of a large public hospital, using the Theory of Constraints' (TOC) comprehensive set of mapping tools to logically represent a problematic situation and investigate options for resolution. Based on the symptoms present, root causes and conflicts were identified, along with potential solutions. Further TOC tools were used to check for possible side effects of the solution, and identify obstacles that might impede successful implementation. Based on the TOC analysis, a trial project was implemented with significant benefits for two departments. Outcomes included dramatically reduced patient wait times and staff overtime, increased patient satisfaction, increased efficiencies, smoothed workload, and improved staff morale and retention, while maintaining patient safety and integrity of treatment, and staying within defined cost parameters.

Human bile acid transporter ASBT (SLC10A2) forms functional non-covalent homodimers and higher order oligomers.

The human apical sodium-dependent bile acid transporter, hASBT/SLC10A2, plays a central role in cholesterol homeostasis via the efficient reabsorption of bile acids from the distal ileum. hASBT has been shown to self-associate in higher order complexes, but while the functional role of endogenous cysteines has been reported, their implication in the oligomerization of hASBT remains unresolved. Here, we determined the self-association architecture of hASBT by site-directed mutagenesis combined with biochemical, immunological and functional approaches. We generated a cysteine-less form of hASBT by creating point mutations at all 13 endogenous cysteines in a stepwise manner. Although Cysless hASBT had significantly reduced function correlated with lowered surface expression, it featured an extra glycosylation site that facilitated its differentiation from wt-hASBT on immunoblots. Decreased protein expression was associated with instability and subsequent proteasome-dependent degradation of Cysless hASBT protein. Chemical cross-linking of wild-type and Cysless species revealed that hASBT exists as an active dimer and/or higher order oligomer with apparently no requirement for endogenous cysteine residues. This was further corroborated by co-immunoprecipitation of differentially tagged (HA-, Flag-) wild-type and Cysless hASBT. Finally, Cysless hASBT exhibited a dominant-negative effect when co-expressed with wild-type hASBT which validated heterodimerization/oligomerization at the functional level. Combined, our data conclusively demonstrate the functional existence of hASBT dimers and higher order oligomers irrespective of cysteine-mediated covalent bonds, thereby providing greater understanding of its topological assembly at the membrane surface.

What style of leadership do women in STEMM fields perform? Findings from an international survey.

It is widely acknowledged that women in science, technology, engineering, mathematics, and medicine (STEMM) fields are underrepresented in leadership globally. However, little is known about how leadership styles of women in STEMM relate to this underrepresentation. This article discusses findings from a survey examining how 61 women in STEMM define leadership and describe their own leadership styles. Using content analysis and drawing on Full Range Leadership Model factors, findings suggest that women define leadership and describe their own leadership styles using transformational factors. However, there was no consistency in how participants defined ideal leadership or how they defined their own leadership styles. This finding unsettles ideas of distinctly gendered leadership styles. We argue that expectations that leadership will be performed in distinctly gendered styles may be contributing to the underrepresentation of women in leadership roles in STEMM.

Fall-related hospitalisations of older Aboriginal and Torres Strait Islander people and other Australians.

OBJECTIVES: To compare the socio-demographic characteristics and type of injury sustained, the use of hospital resources and rates of hospitalisation by injury type, and survival following fall injuries to older Aboriginal people and non-Indigenous Australian people hospitalised for fall-related injuries. DESIGN: Population-based retrospective cohort data linkage study. Setting, participants: New South Wales residents aged 50 years or more admitted to a public or private NSW hospital for a fall-related injury during 1 January 2003 - 31 December 2012. MAIN OUTCOME MEASURES: Proportions of patients with defined injury types, mean hospital length of stay (LOS), 30-day mortality, age-standardised hospitalisation rates and age-adjusted rate ratios, 28-day re-admission rates. RESULTS: There were 312 758 fall-related injury hospitalisations for 234 979 individuals; 2660 admissions (0.85%) were of Aboriginal people. The proportion of hospitalisations for fall-related fracture injuries was lower for Aboriginal than for non-Indigenous Australians (49% v 60% of fall-related hospitalisations; P < 0.001). The major injury type for Aboriginal patients was non-fracture injury to head or neck (19% of hospitalisations); for non-Indigenous patients it was hip fractures (18%). Age-adjusted LOS was lower for Aboriginal than for non-Indigenous patients (9.1 v 14.0 days; P < 0.001), as was 30-day mortality (2.9% v 4.2%; P < 0.001). For Aboriginal people, fall injury hospitalisations increased at an annual rate of 5.8% (95% CI, 4.0-7.7%; P < 0.001); for non-Indigenous patients, the mean annual increase was 2.5% (95% CI, 2.1-3.0; P < 0.001). CONCLUSIONS: The patterns of injury and outcomes of fall injury hospitalisations were different for older Aboriginal people and other older Australians, suggesting that different approaches are required to prevent and treat fall injuries.

Transmembrane domain V plays a stabilizing role in the function of human bile acid transporter SLC10A2.

The human apical sodium-dependent bile acid transporter (hASBT, SLC10A2), primarily expressed in the ileum, is involved in both the recycling of bile acids and cholesterol homeostasis. In this study, the structure-function relationship of transmembrane domain 5 (TM5) residues involved in transport is elucidated. Cysteine scanning mutagenesis of each consecutive residue on TM5 resulted in 96% of mutants having a significantly decreased transport activity, although each was expressed at the cell surface. Specifically, G197 and I208 were no longer functional, and G201 and G212 functioned at a level of <10% upon cysteine mutation. Interestingly, each of these exists along one face of the helix. Studies suggest that neither G201 nor G212 is on the substrate pathway. Conservative alanine mutations of the four residues displayed a higher activity in all but G197A, indicating its functional importance. G197 and G201 form a GxxxG motif, which has been found to be important in helix-helix interactions. According to our model, G197 and G201 face transmembrane domain 4 (TM4) residues G179 and P175, respectively. Similarly, G212 faces G237, which forms part of a GxxxG domain in transmembrane domain 6 (TM6). It is possible that these GxxxG domains and their interacting partners are responsible for maintaining the structure of the helices and their interactions with one another. I205 and I208 are both in positions to anchor the GxxxG domains and direct the change in interaction of TM5 from TM4 to TM6. Combined, the results suggest that residues along TM5 are critical for ASBT function but are not directly involved in substrate translocation.

Trapping of a dopaquinone intermediate in the TPQ cofactor biogenesis in a copper-containing amine oxidase from Arthrobacter globiformis.

The biogenesis of the topaquinone (TPQ) cofactor of copper amine oxidase (CAO) is self-catalyzed and requires copper and molecular oxygen. A dopaquinone intermediate has been proposed to undergo 1,4-addition of a copper-associated water molecule to form the reduced form of TPQ (TPQ(red)), followed by facile oxidation by O(2) to yield the mature TPQ (TPQ(ox)). In this study, we have incorporated a lysine residue in the active site of Arthrobacter globiformis CAO (AGAO) by site-directed mutagenesis to produce D298K-AGAO. The X-ray crystal structure of D298K-AGAO at 1.7-A resolution revealed that a covalent linkage formed between the epsilon-amino side chain of Lys298 and the C2 position of a dopaquinone derived from Tyr382, a precursor to TPQ(ox). We assigned the species as an iminoquinone tautomer (LTI) of lysine tyrosylquinone (LTQ), the organic cofactor of lysyl oxidase (LOX). The time course of the formation of LTI at pH 6.8 was followed by UV/vis and resonance Raman spectroscopies. In the early phase of the reaction, an LTQ-like intermediate was observed. This intermediate then slowly converted to LTI in an isosbestic manner. Not only is the presence of a dopaquinone intermediate in the TPQ biogenesis confirmed, but it also provides strong support for the proposed intermediacy of a dopaquinone in the biogenesis of LTQ in LOX. Further, this study indicates that the dopaquinone intermediate in AGAO is mobile and can swing from the copper site into the active-site wedge to react with Lys298.

Adhesion and structure properties of protein nanomaterials containing hydrophobic and charged amino acids.

Protein polymers are being used or considered for biobased adhesives and coating materials. Most adhesives derived from macro protein molecules work through receptors or cross-links to bring about adhesion. The adhesion mechanism of protein polymers would lead to better understanding of adhesives and the discovery of new practical properties of protein polymers at both nano- and macro-scales. The objective of this research work was to study adhesion properties of protein polymers at nanoscale (a peptide adhesive with nanometer-scale units that range in size of several nanometers, defined as protein nanomaterial). Seven protein nanomaterial samples with different degrees of adhesive strength were designed and synthesized using solid phase chemistries. All protein nanomaterials contain a common hydrophobic core flanked by charged amino acid sequences. The adhesion properties of the protein nanomaterials were investigated at different pH values and curing temperatures. The protein nanomaterials self aggregate and interact with the wood surface. The protein nanomaterial KKK-FLIVIGSII-KKK identified in this study had high adhesive strength toward wood. It had the highest shear strength at pH 12, with an amino acid sequence that was very hydrophobic and uncharged. This protein nanomaterial underwent structural analyses using circular dichroism, laser-Fourier transform infrared, and laser desorption mass spectrometry. At pH 12 this peptide adopted a pH-induced beta-like conformation. Adhesive strength reflects contributions of both hydrogen bonding and van der Waals interactions. Ionic and covalent bonds do not appear to be significant factors for adhesion in this study.