Bridging the gap: national virtual education programme for professionals caring for adults with intellectual and developmental disabilities at the time of COVID-19.

BACKGROUND: The COVID-19 pandemic significantly impacted the mental health of adults with intellectual and developmental disabilities (IDD). During this period of uncertainty and need for up-to-date information, various virtual training programmes demonstrated the role of tele-mentoring programmes. AIM: The aim of this paper is to describe the educational evaluation of the National Extension for Community Healthcare Outcomes - Adults with Intellectual and Developmental Disabilities (ECHO-AIDD), a programme for service providers working with adults with IDD during COVID-19. METHOD: The programme consisted of six sessions, conducted weekly, over two cycles. Each session included didactic teaching by hub team members, COVID-19 news updates, wellness check-ins and a brief mindfulness activity, followed by a 30 to 45 min case-based discussion. The hub structure had an inter-professional approach to team expertise. Those with lived experience were an integral part of the content experts' hub. Pre-, post- and follow-up evaluation data were collected. RESULTS: Care providers from health and social care sectors (n = 230) participated in the programme. High levels of engagement and satisfaction were reported. Self-efficacy ratings improved from pre- to post-, and were maintained at 8-week follow-up; improvement from pre- to post- was significant (P < 0.0001). CONCLUSION: Exposure to National ECHO-AIDD educational intervention led to improvement in perceived competencies. This study also shows the valuable role of people with lived experience in fostering adaptive expertise in learners. The outreach and scalability support the feasibility of building a national virtual community of practice for IDD service providers. Future studies should focus on studying the impact of these programmes on the health outcomes of people with IDD.

Precision health equity for racialized communities.

In the last three decades, a cohort of genomicists have intentionally sought to include more racially diverse people in their research in human genomics and precision medicine. How such efforts to be inclusive in human genomic research and precision medicine are modeled and enacted, specifically if the terms of inclusion are equitable for these communities remains to be explored. In this commentary, we review the historical context in which issues of racial inclusion arose with early genome and genetics projects. We then discuss attempts to include racialized peoples in more recent human genomics research. In conclusion, we raise critical issues to consider in the future of equitable human genomics and precision medicine research involving racialized communities, particularly as it concerns working towards what we call Precision Health Equity (PHE). Specifically, we examine issues of genetic data governance and the terms of participation in inclusive human genomics and precision health research. We do so by drawing on insights and protocols developed by researchers investigating Indigenous Data Sovereignty and propose exploring their application and adaptation to precision health research involving racialized communities.

Reclaiming Indigenous Health in the US: Moving beyond the Social Determinants of Health.

The lack of literature on Indigenous conceptions of health and the social determinants of health (SDH) for US Indigenous communities limits available information for Indigenous nations as they set policy and allocate resources to improve the health of their citizens. In 2015, eight scholars from tribal communities and mainstream educational institutions convened to examine: the limitations of applying the World Health Organization's (WHO) SDH framework in Indigenous communities; Indigenizing the WHO SDH framework; and Indigenous conceptions of a healthy community. Participants critiqued the assumptions within the WHO SDH framework that did not cohere with Indigenous knowledges and epistemologies and created a schematic for conceptualizing health and categorizing its determinants. As Indigenous nations pursue a policy role in health and seek to improve the health and wellness of their nations' citizens, definitions of Indigenous health and well-being should be community-driven and Indigenous-nation based. Policies and practices for Indigenous nations and Indigenous communities should reflect and arise from sovereignty and a comprehensive understanding of the nations and communities' conceptions of health and its determinants beyond the SDH.

Human Papillomavirus Prevalence Among American Indian Women of the Great Plains.

BACKGROUND: High-risk human papillomavirus (hrHPV) causes cervical cancer. In the United States, approximately 40% of women aged 14-59 years from all racial and ethnic groups are infected with HPV, and prevalence typically declines with age. However, American Indian (AI) women are insufficiently sampled to permit a population-specific estimate of hrHPV prevalence. METHODS: Vaginal swabs were self-collected by 698 AI women aged 21-65 years from a tribal community in the Great Plains. We estimated the population prevalence of hrHPV and identified predominant genotypes. RESULTS: The combined prevalence of hrHPV genotypes 16, 18, 31, 33, 35, 39, 45, 51, 52, 56, 58, 59, 66, and 68 was 34.8%. HPV-51 (7.6%), HPV-58 (5.3%), HPV-52 (4.3%), HPV-18 (4.3%), and HPV-16 (3.9%) were most prevalent. hrHPV prevalence declined with age, from 42.2% in women aged 21-24 years to 27.9% in women aged 50-65 years. CONCLUSIONS: HPV-51 was the single most prevalent oncogenic genotype. The combined prevalence of hrHPV among AI women in our sample was high, particularly among women aged 50-65 years, for whom hrHPV prevalence was approximately triple that of other races. Cervical cancer screening efforts should be increased, particularly among women from the community aged 30 years and older.

Health checks for adults with intellectual and developmental disabilities in a family practice.

OBJECTIVE: To provide tips and tools for primary care practitioners carrying out health checks for adult patients with intellectual and developmental disabilities (IDD) and for implementing a systematic program of health checks in a group or team practice. SOURCES OF INFORMATION: The "Primary Care of Adults with Intellectual and Developmental Disabilities. 2018 Canadian Consensus Guidelines" literature review and interdisciplinary input. Experience in implementing health checks in family practices was obtained through the primary care project of H-CARDD (Health Care Access Research and Developmental Disabilities). MAIN MESSAGE: Annual comprehensive health assessments ("health checks") are a recommendation of the 2018 Canadian consensus guidelines for primary care of adults with IDD because of evidence of benefit in this population. Although health checks might require more time to complete for people with IDD than is usual for encounters in primary care, family physicians are in an ideal position to provide this service because of the attributes of family medicine, which include both an orientation to proactive care and the ability to provide continuity of care. Tips and tools are provided for carrying out health checks for adult patients with IDD and for implementing a systematic program of health checks in a group or team practice. CONCLUSION: Health checks can help enhance a family physician's approach to providing care for adults with IDD.

Assessing Acceptability of Self-Sampling Kits, Prevalence, and Risk Factors for Human Papillomavirus Infection in American Indian Women.

We evaluated the feasibility and acceptability of self-sampling for human papillomavirus (HPV) testing and calculated the prevalence of and risk factors for high-risk (hr) HPV infections in a community-based sample of American Indian women. To this end, we recruited 329 Hopi women aged 21-65 years to self-collect vaginal samples for hrHPV testing. Samples were tested by polymerase chain reaction for 14 hrHPV genotypes. We used Chi square tests to identify correlates of preference for clinician Pap testing versus HPV self-sampling, and age-adjusted Poisson regression to evaluate correlates of hrHPV prevalence. We found that satisfaction with HPV self-sampling was high, with 96 % of women reporting that the sample was easy to collect and 87 % reporting no discomfort. The majority (62 %) indicated that they preferred HPV self-sampling to receiving a Pap test from a clinician. Preference for Pap testing over HPV self-sampling was positively associated with adherence to Pap screening and employment outside the home. All samples evaluated were satisfactory for HPV testing, and 22 % were positive for hrHPV. HrHPV prevalence peaked in the late 20 s and declined with increasing age. HrHPV positivity was inversely associated with having children living the household. In conclusion, HPV self-sampling is feasible and acceptable to Hopi women, and could be effective in increasing rates of cervical cancer screening in Hopi communities. HrHPV prevalence was similar to estimates in the general United States population.

A Cluster-Randomized Trial to Evaluate a Mother-Daughter Dyadic Educational Intervention for Increasing HPV Vaccination Coverage in American Indian Girls.

We evaluated whether delivering educational presentations on human papillomavirus (HPV) to American Indian mothers affected HPV vaccination rates in their adolescent daughters. In March-April 2012, we recruited Hopi mothers or female guardians with daughters aged 9-12 years for a cluster-randomized intervention study on the Hopi Reservation. Participants attended mother-daughter dinners featuring educational presentations for mothers on either HPV (intervention) or juvenile diabetes (control) and completed baseline surveys. Eleven months later, we surveyed mothers on their daughters' HPV vaccine uptake. We also reviewed aggregated immunization reports from the Indian Health Service to assess community-level HPV vaccination coverage from 2007 to 2013. Ninety-seven mother-daughter dyads participated; nine mothers reported that their daughters completed the three-dose HPV vaccination series before recruitment. Among the remaining mothers, 63 % completed the follow-up survey. Adjusting for household income, the proportion of daughters completing vaccination within 11 months post-intervention was similar in the intervention and control groups (32 vs. 28 %, adjusted RR = 1.2, 95 % confidence interval (CI) 0.6-2.3). Among unvaccinated daughters, those whose mothers received HPV education were more likely to initiate vaccination (50 vs. 27 %, adjusted RR = 2.6, 95 % CI 1.4-4.9) and complete three doses (adjusted RR = 4.0, 95 % CI 1.2-13.1) than girls whose mothers received diabetes education. Community-level data showed that 80 % of girls aged 13-17 years and 20 % of girls aged 11-12 completed the vaccination series by 2013. HPV vaccine uptake in Hopi girls aged 13-17 years is significantly higher than the U.S. national average. Brief educational presentations on HPV delivered to American Indian mothers might increase HPV vaccination rates in daughters aged 9-12 years.

Effect of tribal language use on colorectal cancer screening among American Indians.

American Indians have one of the lowest colorectal cancer (CRC) screening rates for any racial/ethnic group in the U.S., yet reasons for their low screening participation are poorly understood. We examine whether tribal language use is associated with knowledge and use of CRC screening in a community-based sample of American Indians. Using logistic regression to estimate the association between tribal language use and CRC test knowledge and receipt we found participants speaking primarily English were no more aware of CRC screening tests than those speaking primarily a tribal language (OR = 1.16 [0.29, 4.63]). Participants who spoke only a tribal language at home (OR = 1.09 [0.30, 4.00]) and those who spoke both a tribal language and English (OR = 1.74 [0.62, 4.88]) also showed comparable odds of receipt of CRC screening. Study findings failed to support the concept that use of a tribal language is a barrier to CRC screening among American Indians.

Perceived cancer risk among American Indians: implications for intervention research.

OBJECTIVE: Perceived risk of disease plays a key role in health behaviors, making it an important issue for cancer-prevention research. We investigate associations between perceived cancer risk and selected cancer risk factors in a population-based sample of American Indians. STUDY DESIGN AND POPULATION: Data for this cross-sectional study come from a random sample of 182 American Indian adults, aged > or = 40 years, residing on the Hopi Reservation in northeastern Arizona. OUTCOME MEASURES: Perception of cancer risk was ascertained with the 5-point Likert scale question, "How likely do you think it is that you will develop cancer in the future?" dichotomized into low perceived risk and high perceived risk. RESULTS: Participants reporting a family member with cancer were more likely, by greater than five times, to report the perception that they would get cancer (OR = 5.3; 95% CI: 2.3, 12.3). After controlling for age and family history of cancer, knowledge of cancer risk factors and attitude about cancer prevention were not significantly associated with risk perception. CONCLUSIONS: Perceived cancer risk was significantly associated with self-reported family history of cancer, supporting the importance of personal knowledge of cancer among American Indians. Further research is needed to obtain a more complete picture of the factors associated with perceptions of cancer risk among American Indians in order to develop effective interventions.

Treatment of rheumatoid arthritis with a Syk kinase inhibitor: a twelve-week, randomized, placebo-controlled trial.

OBJECTIVE: Spleen tyrosine kinase (Syk) has been identified as an important modulator of immune signaling in B cells and cells bearing Fcgamma-activating receptors. R788, a prodrug of active metabolite R406, has been shown to be an inhibitor of Syk kinase, active in a variety of in vitro and in vivo models, suggesting potential activity in the treatment of rheumatoid arthritis (RA). METHODS: We enrolled 189 patients with active RA despite methotrexate therapy in a 3-month, multicenter, ascending-dose, double-blind, placebo-controlled trial. The primary end point was the American College of Rheumatology 20% improvement criteria (ACR20) response rate at week 12. RESULTS: Twice-daily oral doses of 100 mg and 150 mg of R788 were significantly superior to placebo or twice-daily oral doses of 50 mg at week 12 (ACR20 achieved in 65% and 72% versus 38% and 32% of patients, respectively [P < 0.01]). ACR50 (achieved in 49% and 57% versus 19% and 17% of patients, respectively) and ACR70 (achieved in 33% and 40% versus 4% and 2% of patients, respectively) scores showed a similar pattern. Clinical effect was noted as early as 1 week after initiation of therapy. Reductions in serum interleukin-6 and matrix metalloproteinase 3 levels also occurred as early as week 1 in the groups receiving 100 mg and 150 mg R788. The major adverse effects were gastrointestinal side effects (predominantly diarrhea) and neutropenia (<1,500/mm3), both of which were dose related. CONCLUSION: These results indicate that an inhibitor of Syk kinase produces significant clinical benefits at 12 weeks in a population of patients with active RA receiving methotrexate therapy. Syk kinase may be an important new therapeutic target in RA and related autoimmune conditions.

Eugenics as Indian removal: sociohistorical processes and the de(con)struction of American Indians in the southeast.

Although research on the history of the eugenics movement in the United States is legion, its impact on state policies that identified and defined American Indians has yet to be fully addressed. The exhibit, Our Lives: Comtemporary Life and Identities (ongoing until September 21, 2014) at the National Museum of the American Indian provides a provocative vehicle for examining how eugenics-informed public policy during the first quarter of the twentieth century served to "remove" from official records Native peoples throughout the Southeast. One century after Indian Removal of the antebellum era, Native peoples in the American Southeast provide an important but often overlooked example of how racial policies, this time rooted in eugenics, effected a documentary erasure of Native peoples and communities.