Evaluation of approaches to recruitment of racially and ethnically diverse breast cancer patients from an integrated health care setting for collection of observational social network data.

PURPOSE: We compared approaches to recruitment of diverse women with breast cancer in a study designed to collect complex social network data. METHODS: We recruited 440 women from the Kaiser Permanente Northern California population newly diagnosed with breast cancer, either in person at a clinic, by email, or by mailed letter. In clinic and mail recruitment, women completed a brief 3-page paper survey (epidemiologic data only), and women had the option to complete a separate, longer (30-40 min) personal social network survey online. In email recruitment, we administered epidemiologic and personal social network measures together in a single online survey. In email and mail recruitment, we limited the sample of non-Hispanic white (NHW) women to 30% of their total. We used descriptive analysis and multinomial logistic regression to examine odds of recruitment vs. mailed letter. RESULTS: Women responded to the social network surveys on average 3.7 months post-diagnosis. Mean age was 59.3 (median = 61.0). In-person clinic recruitment was superior with a 52.1% success rate of recruitment compared with 35.6% by mail or 17.3% by email (χ2 = 65.9, p < 0.001). Email recruitment produced the highest completion rate (82.1%) of personal network data compared with clinic (36.5%) or mail (28.7%), (χ2 = 114.6, p < 0.001). Despite intentional undersampling of NHW patients, response rates for Asian, Hispanic, and Black women by email were lower. However, we found no significant differences in recruitment rates by race and ethnicity for face-to-face clinic recruitment vs. by letter. Letter recruitment produced the highest overall response. CONCLUSION: Mailed letter was the best approach to representative recruitment of diverse women with breast cancer and collection of social network data, and further yielded the highest absolute response.

Profile of hospital admissions for adults with cerebral palsy: a retrospective cohort study.

AIM: To retrospectively profile acute hospital admissions for a defined cohort of adults with cerebral palsy (CP). METHOD: Five years of health service data were interrogated to identify acute health service use by adults with CP. Admission types were described, admission reasons categorized using International Classification of Diseases, 10th Revision codes, and length of stay (LOS) calculated. Any differences between paediatric and adult subsets were explored. RESULTS: Individuals with CP constituted 2922 admissions. Of these, 850 (29%) were adult admissions. There were significant differences between admission reasons for paediatric and adult cohorts, with adults predominantly seeking hospital admission for emergency rather than planned care (emergency reason: adults 62.1%, paediatrics 25.2%; p<0.001). The median adult admission LOS was longer than that of children (p<0.001). The primary diagnosis admission reason in the adult data set was respiratory illness (20%) followed closely by gastrostomy dysfunction (19%). INTERPRETATION: Adults with CP predominantly access acute hospital services for emergency health care. A high frequency of admissions is associated with respiratory illness and gastrostomy dysfunction in adults with CP. What this paper adds Adults with cerebral palsy (CP) access acute inpatient services for emergency health care. Hospital admissions are predominantly because of respiratory illness and gastrostomy dysfunction. Admission length of stay is longer for adults than children. Many adults with CP require hospitalization more than once a year.

Has teaching about intellectual disability healthcare in Australian medical schools improved? A 20-year comparison of curricula audits.

BACKGROUND: People with intellectual disability (ID) have multiple and complex health needs, more frequent healthcare episodes, and experience poorer health outcomes. Research conducted two decades ago showed that medical professionals were lacking in the knowledge and skills required to address the complex needs of this patient group. The aim of the current study was to determine whether Australian undergraduate medical schools that offer ID health education content had changed the amount and nature of such teaching over this period. METHODS: Identical or equivalent questionnaire items were compared across eight Australian medical schools that participated in curricula audits conducted in 1995 (referred to as T1) and 2013/14 (T2). The audits were of the nature of the ID content, methods used to teach it, and who taught it. RESULTS: There was no significant difference in the number of hours of compulsory ID content offered to medical students at T2 (total = 158.3 h; median = 2.8 h per ID unit) compared with T1 (total = 171 h; median = 2.5 h). At T2 compared with T1, units with ID content taught in the area of general practice had increased (2 units; 3.6% to 7 units; 16.3%), while decreases were seen in paediatrics (22 units; 40.0% to 10 units; 23.3%) and psychiatry (10 units; 18.2% to 4 units; 9.3%). The number of schools using problem- and/or enquiry-based learning rose to six at T2 from one at T1. Inclusive teaching practices (people with ID develop or deliver content) in compulsory/elective units had increased at T2 (10 units; 23.3%) compared with T1 (6 units; 10.9%), but direct clinical contact with people with ID had decreased (29 units; 52.7% to 11 units; 25.6%). CONCLUSIONS: Overall, little progress has been made to address the gaps in ID education for medical students identified from an audit conducted in 1995. Renewal of ID content in medical curricula is indicated as a key element in efforts to improve workforce capacity in this area and reduce barriers to care, with the aim of reversing the poor health outcomes currently seen for this group.

Development of a Synthetic Training Model for Canine Thoracocentesis.

Thoracocentesis, a procedure in which air or fluid is removed from the pleural space, is used to relieve respiratory distress, and as a diagnostic procedure in human and veterinary medicine. Veterinary students commonly learn and practice the procedure on canine cadavers which are in limited supply and are not amenable to long-term storage and use. Practicing thoracocentesis on a cadaveric model also provides limited feedback indicative of success and/or procedural complications. One commercial model for practicing canine thoracocentesis is available, but it costs over US$2000 and is excessively bulky. In order to improve the learning process for veterinary students, we have developed a reusable synthetic canine thorax model that accurately replicates the thoracocentesis procedure, provides immediate feedback to the students and reduces the need for canine cadavers. The low cost of our product provides an efficient alternative to cadavers for instruction in veterinary schools or hospitals.

Intellectual disability content within tertiary medical curriculum: how is it taught and by whom?

BACKGROUND: Individuals with intellectual disability experience higher rates of physical and mental health conditions compared with the general population, yet have inequitable access to health care services. Improving the workplace capacity of medical professionals to meet the needs of this population is one way to reduce barriers to care and improve health outcomes. Using diverse pedagogy appropriate to learning outcomes to teach medical students about intellectual disability is a necessary step in improving future workplace capacity. However, there is a lack of research into how, and by whom, medical students are taught about intellectual disability. The aim of this study was to investigate this through an audit of Australian medical school curricula. METHODS: The Deans of Australian universities that provide accredited medical degrees (n = 20) were invited by email to participate in a two-phase audit of intellectual disability content in the curricula. Phase 1 (n = 14 schools) involved the Dean's delegate completing a telephone interview or questionnaire regarding medical course structure. If intellectual disability content was identified, a unit coordinator was invited to complete a survey regarding how this content was taught and by whom (Phase 2; n = 12 schools). RESULTS: There was considerable variability across Australian medical schools regarding methods used to teach content about intellectual disability. Didactic teaching methods were most frequently used (62% of units included some form of lecture), but workshops and tutorials were reasonably well represented (34% of units contained one or both). Thirty-six percent of units included two or more teaching methods. Almost all schools (83%) used some problem- and/or enquiry-based learning. Educator backgrounds included medicine, nursing, and allied health. A majority of schools (n = 9, 75%) involved people with intellectual disability designing and teaching content, but the extent to which this occurred was inconsistent. CONCLUSIONS: Renewing curricula around intellectual disability across all medical schools by introducing varied teaching methods and the inclusion of people with intellectual disability would assist students to develop knowledge, skills, attitudes, and confidence in intellectual disability health. Such renewal offers the potential to reduce barriers to service this population regularly face, thereby improving their health outcomes.

Intellectual disability health content within medical curriculum: an audit of what our future doctors are taught.

BACKGROUND: There is a high burden of unmet health needs for people with intellectual disability. Despite experiencing significantly higher rates of morbidity and mortality compared with the general population, this group faces greater barriers to accessing healthcare. While increasing workplace capacity is one way to reduce this inequitable access, previous research indicates a scarcity of undergraduate teaching in intellectual disability. The aim of the study was to determine the extent and nature of intellectual disability content currently offered within medical degree curricula. METHODS: All Australian universities (n = 20) providing accredited medical training were invited to participate in a two-phase audit via an email invitation to the Dean of each medical school. The Dean's delegate from 14 medical schools completed Phase 1, which involved a questionnaire or telephone interview about the overall medical course structure. Unit coordinators and/or teaching staff from 12 medical schools completed Phase 2, which involved an online survey about intellectual disability content within the curriculum. RESULTS: In Australia, medical school curricula contain a median of 2.55 h of compulsory intellectual disability content. The majority of universities only offer a small amount of compulsory content. Of compulsory units, intellectual disability teaching is minimal in sexual health and emergency medicine (only one unit offered in one school for each). Topics of key relevance in intellectual disability health such as human rights issues, interdisciplinary team work and preventative health are poorly represented in intellectual disability teaching. Elective content varies markedly across universities (1 to 122 h), but emergency medicine, women's health, men's health and many other specialist medicine areas are not represented. Inclusive practice is inconsistent in degree and nature, but a majority of universities (nine) involve people with intellectual disability in the development or delivery of content. CONCLUSIONS: There is a mismatch between the considerable unmet health needs of people with intellectual disability and the inconsistent teaching within medical schools. Future doctors will be better equipped to support the health and wellbeing of people with intellectual disability if curricula are enhanced in this area.

Letter to the Editor: Menstrual problems in women with intellectual disability.

The Editorial Executive Committee welcomes letters, which should be less than 250 words. Before a decision to publish is made, letters which refer to a published article may be sent to the author for a response. Any letter may be sent to an expert for comment. When letters are published, they are usually accompanied in the same issue by any responses or comments. The Committee screens out discourteous, inaccurate or libellous statements. The letters are sub-edited before publication. Authors are required to declare any conflicts of interest. The Committee's decision on publication is final.

Menstrual issues for women with intellectual disability.

The approach to menstrual management in girls with intellectual disabilities should be the same as it is for other girls. Advice may need to be tailored according to the severity of the disability. Girls who can manage their own toilet hygiene can usually learn to manage their menses independently. They need preparation for the menarche with information appropriate to their level of understanding. When assessing menstrual problems, it may help to chart any symptoms against the menstrual cycle to confirm that they are related. The management options for problems such as dysmenorrhoea or heavy bleeding are the same as they are for other women.

Health and disability: partnerships in health care.

BACKGROUND: Despite awareness of the health inequalities experienced by people with intellectual disability, their health status remains poor. Inequalities in health outcomes are manifest in higher morbidity and rates of premature death. Contributing factors include the barriers encountered in accessing and receiving high-quality health care. AIMS: This paper outlines health inequalities experienced by people with intellectual disability and focuses on the opportunities medical education provides to address these. Strategies to ensure that health professional education is inclusive of and relevant to people with disabilities are highlighted. CONCLUSIONS: The barriers experienced by people with intellectual disabilities to the receipt of high-quality health care include the attitudes, knowledge and skills of doctors. Improving medical education to ensure doctors are better equipped is one strategy to address these barriers. Improving health enhances quality of life, enables engagement and optimizes opportunities to participate in and contribute to the social and economic life of communities. ACCESSIBLE ABSTRACT: People with intellectual disabilities sometimes find it difficult to get the healthcare they need to stay well. Teaching student doctors about what people with disabilities want and need can help these students become better doctors. Good doctors help people get well and stay healthy and active. When people feel well they can enjoy their lives and join in activities in their community. This article talks about some of the things doctors need to learn, and some ways to teach them. People with disabilities have a very important role in teaching student doctors.

Dengue virus exploits autophagy vesicles and secretory pathways to promote transmission by human dendritic cells.

Dengue virus (DENV), transmitted by infected mosquitoes, is a major public health concern, with approximately half the world's population at risk for infection. Recent decades have increasing incidence of dengue-associated disease alongside growing frequency of outbreaks. Although promising progress has been made in anti-DENV immunizations, post-infection treatment remains limited to non-specific supportive treatments. Development of antiviral therapeutics is thus required to limit DENV dissemination in humans and to help control the severity of outbreaks. Dendritic cells (DCs) are amongst the first cells to encounter DENV upon injection into the human skin mucosa, and thereafter promote systemic viral dissemination to additional human target cells. Autophagy is a vesicle trafficking pathway involving the formation of cytosolic autophagosomes, and recent reports have highlighted the extensive manipulation of autophagy by flaviviruses, including DENV, for viral replication. However, the temporal profiling and function of autophagy activity in DENV infection and transmission by human primary DCs remains poorly understood. Herein, we demonstrate that mechanisms of autophagosome formation and extracellular vesicle (EV) release have a pro-viral role in DC-mediated DENV transmission. We show that DENV exploits early-stage canonical autophagy to establish infection in primary human DCs. DENV replication enhanced autophagosome formation in primary human DCs, and intrinsically-heightened autophagosome biogenesis correlated with relatively higher rates of DC susceptibility to DENV. Furthermore, our data suggest that viral replication intermediates co-localize with autophagosomes, while productive DENV infection introduces a block at the late degradative stages of autophagy in infected DCs but not in uninfected bystander cells. Notably, we identify for the first time that approximately one-fourth of DC-derived CD9/CD81/CD63+ EVs co-express canonical autophagy marker LC3, and demonstrate that DC-derived EV populations are an alternative, cell-free mechanism by which DCs promote DENV transmission to additional target sites. Taken together, our study highlights intersections between autophagy and secretory pathways during viral infection, and puts forward autophagosome accumulation and viral RNA-laden EVs as host determinants of DC-mediated DENV infection in humans. Host-directed therapeutics targeting autophagy and exocytosis pathways thus have potential to enhance DC-driven resistance to DENV acquisition and thereby limit viral dissemination by initial human target cells following mosquito-to-human transmission of DENV.

Language and communication skills in multilingual children on the autism spectrum: A systematic review.

LAY ABSTRACT: Both parents and service providers have voiced concerns about the potential negative impact of exposure to multiple languages on the language and communication skills of autistic children. The current literature review summarized research that assessed the language and communication skills of multilingual autistic children in comparison with their autistic and nonautistic peers. After a comprehensive search, 22 relevant publications were identified that met the inclusion criteria of the current review. Thirteen studies used both direct (directly administered screening/diagnostic tools) and indirect language assessments (e.g. parent questionnaires). Receptive and expressive vocabulary was the most frequently assessed language skill. Available research does not support the assumption that bilingualism has negative effects on the language and communication skills of autistic children. The language and communication skills of multilingual autistic children frequently resembled their monolingual autistic peers in both strengths and areas of growth. Preliminary findings indicate that multilingual autistic children may share some advantages of multilingualism with their multilingual nonautistic peers. Studies often excluded participants with intellectual disabilities or complex communication needs, which means that a large population of autistic children is not yet represented in research about the effects of multilingualism.

An intervention to improve the self-efficacy of key workers to support parental wellbeing at an early childhood intervention service in Australia: a stepped wedged randomized cluster trial.

PURPOSE: It is well documented parents of children who have a disability are at an increased risk of poor mental health and wellbeing. A capacity building program designed to build key worker self-efficacy to support the mental health of parents accessing early childhood intervention services (ECIS) for their child was trialled. MATERIALS AND METHODS: A stepped-wedge cluster randomised trial design was utilised to deliver and evaluate a 12-month intervention program, comprising tailored professional development, resource development and sustainability measures. The repeated measurements on individuals in six clusters over three follow-up periods were analysed using linear mixed models. Comparison of the control and new program statistical means (adjusted for period effects) were assessed with an F test. RESULTS: Key workers reported increased confidence to talk to parents about their own wellbeing (d = 0.51, F(1, 51.8) = 4.28, p = 0.044) and knowledge of parental mental wellbeing improved (p = 0.006). A reduction in staff sick leave partially offset the cost of the intervention. CONCLUSIONS: A multi-pronged intervention targeted at key workers was found to be an effective way to ensure parental wellbeing is supported at an ECIS in Australia. TRIAL REGISTRATION: ACTRN12617001530314Implications for RehabilitationThere are implications for the development of children whose parents are experiencing high stress and poor mental health, whereby parents of children with disability or developmental delays are at increased risk.Findings from this study support the recommendation that a key worker is provided to holistically support families who access Early Childhood Intervention Services to aid in reducing poor parental wellbeing and child outcomes.Improved confidence to support and initiate conversations regarding parental wellbeing by key workers, in combination with support from management and the organisation to undertake this as part of their role, is a positive finding from this intervention study.

Australians with Down syndrome--health matters.

BACKGROUND: The health and life expectancy of Australians with Down syndrome has improved dramatically over recent decades, resulting in more people living into adulthood and accessing community and hospital based health and social services. OBJECTIVE: This article presents information and resources helpful to general practitioners providing healthcare to patients who have Down syndrome. Healthcare issues through the lifespan are explored, the importance of proactive management is emphasised and strategies are outlined. DISCUSSION: Australians with Down syndrome are an interesting and rewarding group of people with whom to work. They present us with particular challenges in the way we provide healthcare and, in doing so, offer us an opportunity to improve the way we work with other patients who have cognitive and communication difficulties; chronic, complex health and social needs; family or paid carers involved in health management and those who require health advocacy as a part of healthcare provision.

People with disabilities--a rewarding challenge in general practice.

Welcome to an issue of Australian Family Physician that is particularly close to my heart. My son has an intellectual disability, and I understand firsthand the importance and challenges of maintaining optimal health in this group of patients.

Understanding key worker experiences at an Australian Early Childhood Intervention Service.

The delivery of family-centred practice (FCP) within Early Childhood Intervention Services (ECISs) for young children with a disability or development delay conceptualises that children's learning environments, parenting, family and community supports intersect to have the greatest impact on the developing child. The transdisciplinary key worker model is considered a best-practice approach within ECISs whereby staff work collaboratively across disciplinary boundaries to plan and implement services for children and their families. Research suggests families who have a key worker have better relationships with services, fewer unmet needs, better morale, more information about services, higher parental satisfaction and more parental involvement than those not receiving this service. Using a phenomenological qualitative design this study sought to understand transdisciplinary key workers' perspectives regarding the strengths and challenges to undertaking their role in providing services to children and families accessing an ECIS at a major disability service organisation, in light of the changing policy reform during the roll out of the National Disability Insurance Scheme in Australia. Purposive sampling was used to recruit key workers (n = 13) to participate in semi-structured interviews during 2015. Data were analysed using an inductive, thematic approach. Results revealed four main themes that impact on the effectiveness of key workers' service provision. These are broadly categorised as (a) Engagement with the workplace, (b) Engagement with clients, (c) Professional capacity and (d) Staff Wellbeing. The findings aligned with previous studies identifying sources of support and stress for disability services staff. They also provided new insights into key workers' lack of confidence in addressing parental mental health issues, despite operating under a family-centred approach. These findings informed the development of an intervention trial and evaluation to improve support for parent and staff wellbeing within a Victorian Disability Service with the aim of building their capacity to support children with a disability.

Autophagy-enhancing drugs limit mucosal HIV-1 acquisition and suppress viral replication ex vivo.

Current direct-acting antiviral therapies are highly effective in suppressing HIV-1 replication. However, mucosal inflammation undermines prophylactic treatment efficacy, and HIV-1 persists in long-lived tissue-derived dendritic cells (DCs) and CD4+ T cells of treated patients. Host-directed strategies are an emerging therapeutic approach to improve therapy outcomes in infectious diseases. Autophagy functions as an innate antiviral mechanism by degrading viruses in specialized vesicles. Here, we investigated the impact of pharmaceutically enhancing autophagy on HIV-1 acquisition and viral replication. To this end, we developed a human tissue infection model permitting concurrent analysis of HIV-1 cellular targets ex vivo. Prophylactic treatment with autophagy-enhancing drugs carbamazepine and everolimus promoted HIV-1 restriction in skin-derived CD11c+ DCs and CD4+ T cells. Everolimus also decreased HIV-1 susceptibility to lab-adapted and transmitted/founder HIV-1 strains, and in vaginal Langerhans cells. Notably, we observed cell-specific effects of therapeutic treatment. Therapeutic rapamycin treatment suppressed HIV-1 replication in tissue-derived CD11c+ DCs, while all selected drugs limited viral replication in CD4+ T cells. Strikingly, both prophylactic and therapeutic treatment with everolimus or rapamycin reduced intestinal HIV-1 productive infection. Our findings highlight host autophagy pathways as an emerging target for HIV-1 therapies, and underscore the relevancy of repurposing clinically-approved autophagy drugs to suppress mucosal HIV-1 replication.

Overcoming communication barriers - working with patients with intellectual disabilities.

BACKGROUND: Communication styles and communication difficulties may impact on the ability of general practitioners to provide best possible health care, particularly for patients with intellectual and other developmental disabilities. OBJECTIVE: To highlight potential difficulties GPs may face in consultations with adult patients with an intellectual disability and to raise awareness among GPs of the different communication methods used by people with intellectual disabilities. Current recommendations for improving communication with this marginalised group and practical issues in implementing these recommendations are also discussed. DISCUSSION: People with intellectual disabilities have different communication abilities, using a range of different styles as a group, as well as on an individual basis. They may use speech, augmentative and alternative communication strategies, or visual or behavioural cues to indicate their wants, needs or feelings. Improved collaboration between GPs, patients, and patients' support people, is encouraged to develop an individualised approach to communication with each patient and to promote best possible health outcomes and patient satisfaction.

A Capacity Building Program to Improve the Self-Efficacy of Key Workers to Support the Well-Being of Parents of a Child With a Disability Accessing an Early Childhood Intervention Service: Protocol for a Stepped-Wedge Design Trial.

BACKGROUND: Early childhood intervention services support children with disabilities or developmental delays from birth to school entry with the aim to achieve optimal outcomes for children and their families. A transdisciplinary approach to delivering early childhood intervention, particularly the key worker model, is considered the best practice, where allied health professionals (eg, speech pathologists, physiotherapists, occupational therapists, psychologists, and special educators) and the family work together as a collaborative team to share information, knowledge, and skills across disciplinary boundaries, with a key worker coordinating and delivering most of the intervention to achieve the goals for the child and their family. Initial qualitative research demonstrated parents want their key worker to also support their mental well-being. Poor mental well-being of parents of a child with a disability is of relevance to key workers because of its association with poor child-related outcomes. One of the major challenges key workers report in supporting families is managing parent distress and, because of lack of confidence, is a secondary negative impact on their own well-being. OBJECTIVE: This trial has been developed in response to the negative cycle of low professional confidence to support parents' mental health, increased key worker stress, and high turnover of employees working within a disability service setting. METHODS: A stepped-wedge design is used to deliver and evaluate a capacity building intervention program, over a 9-month period, for key workers to improve both parent and staff mental well-being. The primary outcome is key workers' self-efficacy in supporting parental mental well-being. Secondary outcomes include manager self-efficacy in supporting key workers and staff perceptions of supervisory support, staff job-related mental well-being, parental satisfaction with their key worker, parental mental well-being, and cost-consequence of the program. RESULTS: This study was funded in October 2014, supported by an Australian National Health and Medical Research Council Partnership Project grant (Grant number 1076861). Focus groups and individual face-to-face interviews were conducted from February to November 2015 with 40 parents who have a child with a disability and 13 key workers to gain insight into how the disability service could better promote child and family health and well-being and to inform about the development of the trial. CONCLUSIONS: The stepped-wedge study design is practical and ethical for research with a vulnerable population group of parents of a child with a disability, providing high quality data with all participants exposed to the intervention by the end of the trial. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ACTRN12617001530314; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=372578 (Archived by WebCite at http://www.webcitation.org/76XjDavnG). INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/12531.

People with developmental disabilities teaching medical students--does it make a difference?

BACKGROUND: Negative attitudes towards people with developmental disabilities, including intellectual disabilities (ID), have the potential to contribute to the poor healthcare received by this group. The aim of this study was to evaluate changes in the attitudes of fourth year undergraduate medical students towards interacting with people with developmental disabilities after taking part in a communication skills training session. METHOD: Students (N = 128) completed an attitude scale at the beginning and end of a 3-hour communication skills session, and provided evaluative comments. The session comprised a lecture on developmental disabilities and communication, followed by direct contact with tutors with disabilities, and finally, a communication exercise. All tutors had ID, and some also had physical and/or sensory disabilities. RESULTS: A significant change in attitudes was evident, with the students feeling more comfortable interacting with people with disabilities after the session than before. Students reported that they had gained a greater understanding and insight into the communication issues faced by this group, as well as valuing them more as individuals. CONCLUSIONS: Even a brief information session, combined with the opportunity to interact with people with disabilities, can have an impact on medical students' attitudes. Further research is needed to determine how such experiences may influence their future practice.