Eligibility criteria in NIH-funded clinical trials: Can adults with intellectual disability get in?

BackgroundAlthough scientific breakthroughs can promote health equity, there is concern that adults with intellectual disability, a health disparities population, may be excluded from clinical trials.ObjectiveTo determine the extent to which adults with intellectual disability are subject to exclusion from National Institutes of Health (NIH)-funded clinical trials.MethodsWe studied recent NIH-funded Phase 2/3, 3, and 4 clinical trials of United States-based working-age adults (>18 < 55 years of age) listed in ClinicalTrials.gov. We coded eligibility criteria for inclusion, direct exclusion, and indirect exclusion of adults with intellectual disability.ResultsWe rarely identified studies that directly include adults with intellectual disability. Most studies (74.6%) had eligibility criteria that directly and/or indirectly exclude adults with intellectual disability. Approximately one-third of studies had direct exclusion criteria based on cognitive impairment or diagnosis of intellectual disability. Nearly 65% of studies indirectly excluded adults with intellectual disability based on factors likely associated with intellectual disability (e.g., functional capacity, inability to read/write, and/or research staff discretion).ConclusionsWe found less exclusion based on diagnosis of intellectual disability than anticipated. Nonetheless, about three-fourths of studies had eligibility criteria which would likely lead to the direct and/or indirect exclusion of adults with intellectual disability. Our findings suggest substantial cause for concern that adults with intellectual disability experience widespread exclusion from NIH-funded clinical trials—exclusion that may lack appropriate justification and assessment. Consequently, this group is denied equal access to the potential benefits of scientific discovery. We provide recommendations for approaches to include adults with intellectual disability.     

Do adolescents with cerebral palsy agree with their caregivers on their participation and quality of life?

Background

It is important to determine the quality of life (QoL) and level of participation in children with Cerebral Palsy (CP). Previous research has used reports from adolescents or caregivers, but there is no evidence that caregivers' reports accurately reflect the experiences of the adolescents they are interested in.

Rural physicians' attitudes toward the elderly: evidence of ageism?

Rural elderly patients receive health services primarily in the outpatient setting, with their primary care provider often serving as their only point of contact with the health care system. Little is known however about the attitudes of physicians, and more specifically attitudes of those practicing in rural locations, toward differing age groups of the elderly. The current study was undertaken to examine the perceptions and attitudes of rural Florida physicians who routinely provide care for the elderly. We utilized an existing and validated survey instrument designed to measure the perceptions and attitudes of health professionals toward 3 different cohorts of elderly people: the elderly population in general, the elderly population older than 85 years, and the nursing home population. The study provides evidence that physicians who routinely provide care for the elderly in rural Florida demonstrate ageist perceptions, especially against those older than 85 years and the nursing home population. The trends identified are important because they may directly influence the quality of care that this population receives.     

Do occupational physicians agree about ill-health retiral? A study of simulated retirement assessments

A questionnaire survey on simulated ill-health retirement decisionswas performed at a scientific conference for local authoritymedical advisers. Respondents were asked to make decisions basedon ten case scenarios drawn from real life. The overall agreementamongst 35 physicians was low, with a k statistic of 0.241.There were wide variations amongst respondents, with two physiciansaccepting all ten cases for retirement while another acceptedonly one. The survey suggests that there is great potentialfor inconsistency and inequity in such decisions. An improvementin agreement between physicians might be achieved by training,consensus guidelines and audit. This issue should be addressedby occupational physicians and trustees of superannuation schemes.     

What housing features should inform the development of housing solutions for adults with neurological disability?: A systematic review of the literature

Despite the recent emphasis in Australian political, academic, and legislative narratives to more actively promote real housing choice for people with high healthcare and support needs, there is a lack of understanding regarding the specific housing features that might constitute better housing solutions for this population. Inclusive housing provision in Australia rightly emphasises safety and accessibility issues but often fails to incorporate factors related to broader psychosocial elements of housing such as dwelling location, neighbourhood quality, and overall design. While the importance of these broader elements appears obvious, it is not yet clear what specific housing features relate to these elements and how they might contribute to housing solutions for people with high healthcare and support needs. For individuals with complex neurological conditions such as brain injury or cerebral palsy, who require maximum support on a daily basis yet want to live independently and away from a primary care hospital or health facility, a more detailed understanding of the housing features that might influence design and development is needed. Thus, in order to clarify the broader factors related to housing solutions for this population, a systematic review was conducted to identify and synthesise the current research evidence (post-2003) and guide future housing design and development opportunities.From the included studies (n=26), 198 unique housing features were identified. From the 198 features, 142 related to housing design (i.e., internal or external characteristics of the dwelling and its land), 12 related to the dwelling's location (i.e., its proximity to available resources), and 54 related to the nature of the surrounding neighbourhood (i.e., the physical, social, and economic conditions of the area). The findings of this review contribute significantly to the literature by reporting a broader scope of relevant housing features for people with neurological disability, presenting preliminary guiding principles for housing design and development for this population, and identifying opportunities for future research.     

Introduction to theme section on geographies of intellectual disability: 'outside the participatory mainstream'?

This paper introduces the following theme section on Geographies of Intellectual Disability. It outlines the historiography of geographical work on intellectual disability, noting in particular the contributions of Wolpert (Transactions of the Institute of British Geographers 5 (1980) 391) and Hall and Kearns (Health and Place 7 (2001) 237), before tracing claims made about both the 'institutional' and 'deinstitutional' eras in the changing geographies confronting and experienced by intellectually disabled people. This account, highlighting the tendency for such people to remain 'outside the participatory mainstream' in almost all circumstances, offers along the way an introduction to the four contributions that follow.     

Are there racial differences in attitudes toward hospice care? A study of hospice-eligible patients at the Visiting Nurse Service of New York

Research on African American and white attitudes, perceptions, and knowledge of hospice care has focused predominantly on patients and providers in institutions and community-based care settings. Little is known about patients receiving home health services, despite growing trends toward noninstitutional care in the United States. This study of home health clients who are eligible for hospice, but not currently receiving it, found few differences between racial groups with regard to attitudes about end-of-life care. An alarming proportion of African American and white home health clients held erroneous ideas about hospice care and had not discussed this option with their providers. These findings suggest that increased referrals to home-based hospice care among home health clients depend on the availability and professional dissemination of accurate, spiritually sensitive information.     

Do hedonic- versus nutrition-based attitudes toward food predict food choices? a cross-sectional study of 6- to 11-year-olds

Background

Implicit and explicit attitudes are potential precursors of food choices and combine affective and cognitive components that can vary in their relative dominance. Yet, the affective and cognitive components of attitudes toward food can lead to distinct predisposition toward a food item and potentially to different food choices. In the food domain, the affective component pertains to the hedonic tone of consumption, while the cognitive component encompasses nutritional value or health consequences of food. The present study investigated whether hedonic- versus nutrition-based implicit and/or explicit attitudes toward food predicts children’s healthy versus unhealthy food choices.

Methods

A total of 63 children (age range?=?6.3–11.5) participated in a 90-min session at 5 pm (i.e., afterschool snack time in France). The children were asked to choose five food items from a buffet featuring five healthy and five unhealthy sweet foods pretested as being highly liked. Children ate what they had chosen. Moreover, their implicit attitudes were assessed with a pairing task in which children were presented with 10 food triplets and asked to choose two food items that “best go together”. For each triplet, foods could be paired according to their hedonic or nutritional characteristics. Explicit attitudes were assessed with a task in which children placed each of 48 food items into one of the following categories: “yummy”, “yucky” (i.e., hedonic categories), “makes you strong”, or “makes you fat” (i.e., nutritional categories).

Results

Both implicit and explicit attitudes significantly influenced children’s food choices. We observed that children with more hedonic-based implicit or explicit attitudes toward food were more likely to choose healthy food options from the buffet. Conversely, children with both implicit and explicit nutrition-based attitudes chose less healthy foods.

Conclusions

Hedonic-based attitudes toward food seem to drive healthier food choices in children compared with nutrition-based attitudes in this particular eating context. These findings suggest that pleasure from eating might be an ally with regard to healthy eating among children. Additional research is needed to understand the etiology of children’s attitudes toward food in order to provide insights on how to shape adequate children’s attitudes to guide them toward healthy food choices.

     

Evaluating the longitudinal impact of a disability education intervention on medical students’ attitudes towards persons with a disability

BackgroundThe attitudes and empathy levels of healthcare providers towards persons with a disability have been highlighted as important factors contributing to the quality of healthcare provided to this patient population.ObjectiveThis study aimed to investigate whether changes in medical students’ attitudes and empathy towards persons with a disability following an educational intervention were maintained when measured again one year post intervention. This study provided a one year longitudinal follow up to a previous study investigating the efficacy of an educational intervention to cultivate positive change in empathy levels and attitudes towards disability.MethodAn online survey was distributed to medical students who had completed a disability module one year previously during their second year of medical training. The survey comprised measures of attitude, empathy and level of social contact with persons with a disability.ResultsThough there was a statistically significant increase in both attitude and empathy measures immediately post intervention, these gains were not sustained when measured one year later. In the case of empathy, levels measured one year later had decreased significantly from baseline measures at pretest. No significant relationship was observed between level of social contact and measures of attitudes and empathy.ConclusionsWhile previous research suggests that the educational intervention has been successful in ameliorating both attitudes and empathy levels in the short term, this study highlights the difficulty in sustaining such improvements. Changes to the design and delivery of educational interventions may be necessary for the benefits to persist into the long term.     

Do patients and expert doctors agree on the assessment of consultation skills? A comparison of two patient consultation assessment scales with the video component of the MRCGP

OBJECTIVE: The purpose of this study was to determine whether patient ratings of general practice Registrars' consulting skills are associated with 'expert' scoring using the MRCGP video assessment protocol. METHODS: A cross-sectional observational study of general practice Registrars' consultation skills was carried out in 23 practices in South East Scotland using two types of patient assessment compared with expert assessment of video consultation. The main outcome measures were rank correlation of Registrars' overall level of attainment on the Royal College of General Practitioner (RCGP) video assessment with mean score on the Patient Enablement Instrument (PEI) and mean score on the Consultation Satisfaction Questionnaire (CSQ). RESULTS: The rank correlation of Registrars' mean PEI scores with marks on the RCGP video component was 0.01 (P = 0.97, n = 19) and mean CSQ score 0.05 (P = 0.83, n = 19). There were no adverse comments from patients, but Registrars and trainers found the process onerous. CONCLUSION: No meaningful association was identified between Registrars' score on the RCGP video examination and patient assessment via either the PEI or the CSQ. This suggests that, with regard to measuring quality in the consultation, one or more of the assessments are invalid or that they are measuring different attributes. Further research to elucidate the reasons for the lack of correlation is required.     

Do disability,parenthood, and gender matter for health disparities?: A US population-based study

BackgroundExisting research has documented adverse health outcomes among parents with disabilities relative to parents without disabilities, but little is known about whether parenthood adds unique stress and health consequences for people with disabilities. Less is known about whether the effects of parenthood differ between mothers and fathers with disabilities.ObjectivesThis paper examined health-related quality of life, obesity, and health behaviors between US parents and nonparents with and without disabilities. We also explored differences in health outcomes separately for men and women by one's parental and disability status.MethodsAn analytic sample of parents and nonparents aged 18–64, with and without disabilities, were derived from the 2016 Behavioral Risk Factor Surveillance System (9,117 parents and 33,961 nonparents with disabilities). Multivariate logistic regression analyses were applied, controlling for individuals’ socio-demographic characteristics and their history of chronic conditions.ResultsParents with disabilities, compared to parents without disabilities and nonparents with and without disabilities, were at higher risk of reporting frequent physical distress, obesity, smoking, and insufficient sleep. Among those with disabilities, fathers were more likely than nonfathers to report poor or fair health, frequent physical and mental distress, and obesity; these differences were not evident between mothers and nonmothers with disabilities.ConclusionsThe findings suggest the urgent need for policies and programs to address the health-related needs of parents with disabilities, as well as the need for targeted programs to support fathers with disabilities.     

Do we need genomic research for the prevention of common diseases with environmental causes?

Concerns have been raised about the value of genomic research for prevention and public health, especially for complex diseases with risk factors that are amenable to environmental modification. Given that gene-environment interactions underlie almost all human diseases, the public health significance of genomic research on common diseases with modifiable environmental risks is based not necessarily on finding new genetic "causes" but on improving existing approaches to identifying and modifying environmental risk factors to better prevent and treat disease. Such applied genomic research for environmentally caused diseases is important, because 1) it could help stratify disease risks and differentiate interventions for achieving population health benefits; 2) it could help identify new environmental risk factors for disease or help confirm suspected environmental risk factors; and 3) it could aid our understanding of disease occurrence in terms of transmission, natural history, severity, etiologic heterogeneity, and targets for intervention at the population level. While genomics is still in its infancy, opportunities exist for developing, testing, and applying the tools of genomics to clinical and public health research, especially for conditions with known or suspected environmental causes. This research is likely to lead to population-wide health promotion and disease prevention efforts, not only to interventions targeted according to genetic susceptibility.     

Improving health through neighbourhood environmental change: are we speaking the same language? A qualitative study of views of different stakeholders

OBJECTIVE: To explore the perspectives of four groups of stakeholders to proposed improvements to the built environment-a neighbourhood renewal consisting of a home zone development and an extension of the National Cycle Network (NCN). Design Qualitative focus group study. Setting A deprived neighbourhood. Sample Four focus groups were conducted with 10 residents from the neighbourhood undergoing change, nine pupils from a local primary school, 10 students and tutors from a local further education college and three local authority planners overseeing the developments. RESULTS: We identified four main themes relating to the impact of environmental change. These were safety, space, antisocial behaviour and physical activity and health, the latter being the least important to all groups. A mismatch regarding environmental change emerged in perspectives between different stakeholders. The residents were most concerned about home and car (parking) safety and in particular felt that the new cycle/walk way would reduce their safety, whereas the planners felt that the environmental change would provide a safer and healthier environment for the residents. CONCLUSION: The assumption that planned provision of supportive environments will improve levels of physical activity, health and lifestyle may not be true if the developments do not take account of community concerns regarding personal safety.