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Adults with down syndrome (DS) have a lifetime dementia risk in excess of 95%, with a median age of onset of 55 years, due to trisomy 21. Co-occurring Alzheimer's disease (AD) has increased morbidity and mortality, and it is now recommended to screen for AD in all adults with DS beginning at 40 years of age. In this manuscript, we present two clinical cases of adults with DS who developed AD summarizing their medical histories, presenting symptoms, path to diagnosis and psychosocial aspects of care collected from retrospective chart review with caregiver consent. These two cases were chosen due to their complexity and interwoven nature of the medical and psychosocial aspects, and highlight the complexity and nuance of caring for patients with DS and AD.
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OBJECTIVE: To characterize the current state of mental health within the surgical workforce in the United States. BACKGROUND: Mental illness and suicide is a growing concern in the medical community; however, the current state is largely unknown. METHODS: Cross-sectional survey of the academic surgery community assessing mental health, medical error, and suicidal ideation. The odds of suicidal ideation adjusting for sex, prior mental health diagnosis, and validated scales screening for depression, anxiety, post-traumatic stress disorder (PTSD), and alcohol use disorder were assessed. RESULTS: Of 622 participating medical students, trainees, and surgeons (estimated response rate=11.4%-14.0%), 26.1% (141/539) reported a previous mental health diagnosis. In all, 15.9% (83/523) of respondents screened positive for current depression, 18.4% (98/533) for anxiety, 11.0% (56/510) for alcohol use disorder, and 17.3% (36/208) for PTSD. Medical error was associated with depression (30.7% vs. 13.3%, P <0.001), anxiety (31.6% vs. 16.2%, P =0.001), PTSD (12.8% vs. 5.6%, P =0.018), and hazardous alcohol consumption (18.7% vs. 9.7%, P =0.022). Overall, 13.2% (73/551) of respondents reported suicidal ideation in the past year and 9.6% (51/533) in the past 2 weeks. On adjusted analysis, a previous history of a mental health disorder (aOR: 1.97, 95% CI: 1.04-3.65, P =0.033) and screening positive for depression (aOR: 4.30, 95% CI: 2.21-8.29, P <0.001) or PTSD (aOR: 3.93, 95% CI: 1.61-9.44, P =0.002) were associated with increased odds of suicidal ideation over the past 12 months. CONCLUSIONS: Nearly 1 in 7 respondents reported suicidal ideation in the past year. Mental illness and suicidal ideation are significant problems among the surgical workforce in the United States.
Subject(s)
Alcoholism , Suicide , Humans , United States/epidemiology , Mental Health , Alcoholism/epidemiology , Alcoholism/psychology , Cross-Sectional Studies , Risk Factors , Suicidal Ideation , Depression/epidemiology , Depression/psychologyABSTRACT
PURPOSE: We previously designed the Down Syndrome Societal Services and Supports Survey (DS-4S) to measure country-specific supports for people with Down syndrome (DS) across multiple life domains (healthcare, education, policy, independence, and community inclusion). We now report and analyze the results. METHODS: We partnered with international DS consortia, who distributed the DS-4S to 154 cumulative members representing over 100 countries. Organizations were included if they had a holistic focus on the lives of people with DS and if at least 50% of their members either have DS or are family members of people with DS. Factor analysis was used to analyze the results. RESULTS: We received survey responses from 55 different organizations in 50 countries who met inclusion criteria. Each country had complete data for at least 4 of the 5 domains. The lowest 5 scores were from countries in Africa and Asia; the highest 5 scores were in Europe and North America. CONCLUSION: The responses to the DS-4S stratified countries within each surveyed domain. The DS-4S can now be used to track countries' progress over time and to determine which countries have best practices that might be replicated. We will publish the results and update them biennially at www.DownSyndromeQualityOfLife.com.
Subject(s)
Down Syndrome , Down Syndrome/epidemiology , Humans , Surveys and Questionnaires , International CooperationABSTRACT
BACKGROUND: People with serious mental illness (SMI) and people with intellectual disabilities/developmental disabilities (ID/DD) are at higher risk for COVID-19 and more severe outcomes. We compare a tailored versus general best practice COVID-19 prevention program in group homes (GHs) for people with SMI or ID/DD in Massachusetts (MA). METHODS: A hybrid effectiveness-implementation cluster randomized control trial compared a four-component implementation strategy (Tailored Best Practices: TBP) to dissemination of standard prevention guidelines (General Best-Practices: GBP) in GHs across six MA behavioral health agencies. GBP consisted of standard best practices for preventing COVID-19. TBP included GBP plus four components including: (1) trusted-messenger peer testimonials on benefits of vaccination; (2) motivational interviewing; (3) interactive education on preventive practices; and (4) fidelity feedback dashboards for GHs. Primary implementation outcomes were full COVID-19 vaccination rates (baseline: 1/1/2021-3/31/2021) and fidelity scores (baseline: 5/1/21-7/30/21), at 3-month intervals to 15-month follow-up until October 2022. The primary effectiveness outcome was COVID-19 infection (baseline: 1/1/2021-3/31/2021), measured every 3 months to 15-month follow-up. Cumulative incidence of vaccinations were estimated using Kaplan-Meier curves. Cox frailty models evaluate differences in vaccination uptake and secondary outcomes. Linear mixed models (LMMs) and Poisson generalized linear mixed models (GLMMs) were used to evaluate differences in fidelity scores and incidence of COVID-19 infections. RESULTS: GHs (n=415) were randomized to TBP (n=208) and GBP (n=207) including 3,836 residents (1,041 ID/DD; 2,795 SMI) and 5,538 staff. No differences were found in fidelity scores or COVID-19 incidence rates between TBP and GBP, however TBP had greater acceptability, appropriateness, and feasibility. No overall differences in vaccination rates were found between TBP and GBP. However, among unvaccinated group home residents with mental disabilities, non-White residents achieved full vaccination status at double the rate for TBP (28.6%) compared to GBP (14.4%) at 15 months. Additionally, the impact of TBP on vaccine uptake was over two-times greater for non-White residents compared to non-Hispanic White residents (ratio of HR for TBP between non-White and non-Hispanic White: 2.28, p = 0.03). CONCLUSION: Tailored COVID-19 prevention strategies are beneficial as a feasible and acceptable implementation strategy with the potential to reduce disparities in vaccine acceptance among the subgroup of non-White individuals with mental disabilities. TRIAL REGISTRATION: ClinicalTrials.gov, NCT04726371, 27/01/2021. https://clinicaltrials.gov/study/NCT04726371 .
Subject(s)
COVID-19 , Group Homes , Mental Disorders , Humans , COVID-19/prevention & control , COVID-19/epidemiology , Male , Female , Adult , Massachusetts , Middle Aged , COVID-19 Vaccines/administration & dosage , Intellectual DisabilityABSTRACT
BACKGROUND: The registered nurse (RN) workforce experienced critical pre-pandemic and pandemic shortages of labor in some areas in the United States. People living in these health professional shortage areas (HPSAs) may have less access to health services. The Bureau of Health Workforce within the Health Resources and Services Administration administers Nurse Corps scholarship and loan repayment programs to increase healthcare access by increasing the supply and distribution of RNs, nurse practitioners, and nurse faculty to HPSAs. The American Rescue Plan Act of 2021 (ARPA) made available considerable new resources for the program. PURPOSE: This paper reports on Nurse Corps applications, awards, and distribution in 2 cohorts in the period 2017 to 2022 to assess the impact of receiving an additional $200 million appropriated in 2021. DISCUSSION: Additional funds through ARPA were associated with nearly threefold increases in the number of Nurse Corps awards. Program participants worked in a total of 1,316 counties (42% of all U.S. counties) in 2020 to 2022, a 76% increase from 749 counties in 2017 to 2019. CONCLUSION: Increased funding for scholarship and loan repayment can help to improve the distribution of nurse labor to a greater number of critical shortage areas in the United States.
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This study examined COVID-19 infection and hospitalizations among people with serious mental illness who resided in residential care group homes in Massachusetts during the first year of the COVID-19 pandemic. The authors analyzed data on 2261 group home residents and COVID-19 data from the Massachusetts Department of Public Health. Outcomes included positive COVID-19 tests and COVID-19 hospitalizations March 1, 2020-June 30, 2020 (wave 1) and July 1, 2020-March 31, 2021 (wave 2). Associations between hazard of outcomes and resident and group home characteristics were estimated using multi-level Cox frailty models including home- and city-level frailties. Between March 2020 and March 2021, 182 (8%) residents tested positive for COVID-19, and 51 (2%) had a COVID-19 hospitalization. Compared with the Massachusetts population, group home residents had age-adjusted rate ratios of 3.0 (4.86 vs. 1.60 per 100) for COVID infection and 13.5 (1.99 vs. 0.15 per 100) for COVID hospitalizations during wave 1; during wave 2, the rate ratios were 0.5 (4.55 vs. 8.48 per 100) and 1.7 (0.69 vs. 0.40 per 100). In Cox models, residents in homes with more beds, higher staff-to-resident ratios, recent infections among staff and other residents, and in cities with high community transmission risk had greater hazard of COVID-19 infection. Policies and interventions that target group home-specific risks are needed to mitigate adverse communicable disease outcomes in this population.Clinical Trial Registration Number This study provides baseline (i.e., pre-randomization) data from a clinical trial study NCT04726371.
Subject(s)
COVID-19 , Mental Disorders , Humans , COVID-19/epidemiology , Group Homes , Massachusetts/epidemiology , Mental Disorders/epidemiology , Nursing Homes , Pandemics , Clinical Trials as TopicABSTRACT
OBJECTIVE: To evaluate existing federal survey data infrastructure pertaining to firearms and firearm-related violence. BACKGROUND: Firearm-related violence results in >40,000 deaths in the United States each year. Limited federal investments over the past 25 years have restricted a systematic approach to federal data collection related to firearms. METHODS: We conducted a systematized review of the 22 continuously administered public health surveys in the US Federal Statistical System conducted between 1995 and 2020. Surveys were included if they addressed 1 of 4 areas of inquiry: (1) firearms; (2) exposure to or experience of firearm-related, intimate partner, or other interpersonal violence; (3) substance use and substance use disorder; (4) behavioral health. Descriptive statistics were used to report the frequency of relevant questions. RESULTS: Nine of 22 surveys were focused on one of these domains and included in this analysis, 7 focused on adults (total 128 survey administrations over the study period) and 2 on youth and adolescents (total 30 administrations). Among all adult surveys, questions related to firearm use were asked 20% of the time, firearm-related violence 4%, firearm ownership 23%; in youth surveys, firearm use was addressed 0 times, firearm-related violence 57%, and firearm ownership 90%. CONCLUSIONS: Reliable national data are critical to understanding firearm-related violence as well as to developing, implementing, and evaluating public health measures to address it. Improving the consistency of questions pertaining to firearm access and experiences of violence in federal surveys offers an opportunity to improve national data infrastructure.
Subject(s)
Firearms , Adult , Adolescent , Humans , United States , Public Health , Violence , Surveys and Questionnaires , Health SurveysABSTRACT
OBJECTIVE: Evaluate the effect of a virtual coaching program offered to women surgery residents in a surgical society. BACKGROUND: Randomized controlled experiments evaluating the effect of coaching on trainee well-being and burnout is lacking. METHODS: Women surgery residents in the Association of Women Surgeons were recruited to participate in a randomized controlled trial of the effects of a virtual coaching program on trainee well-being. Attending surgeons served as coaches after completing in-person training. Residents (n=237) were randomized to intervention (three 1:1 coaching sessions over 9 mo) or control (e-mailed wellness resources). Participants were surveyed at baseline and postintervention using validated measures of well-being, burnout, and resilience. Changes in outcome measures between presurvey and postsurvey were compared between study arms. RESULTS: Survey response rates were 56.9% (n=66) in the control group and 69.4% (n=84) in the intervention group ( P =0.05). The intervention group showed significant improvement in professional fulfillment ( P =0.021), burnout (0.026), work exhaustion (0.017), self-valuation (0.003), and well-being ( P =0.002); whereas the control group showed significant improvement in self-valuation ( P =0.015) and significant decline in resilience ( P =0.025). The intervention group had a significant improvement in well-being ( P =0.015) and intolerance of uncertainty ( P =0.015) compared to controls. CONCLUSIONS: Women surgery residents who participated in a remote coaching program offered by a surgical society demonstrated improvement in aspects of well-being relative to peers who did not receive coaching. Therefore, remote coaching offered by a professional society may be a useful component of initiatives directed at trainee well-being.
Subject(s)
Burnout, Professional , Internship and Residency , Mentoring , Surgeons , Humans , Female , Surgeons/education , Burnout, Professional/prevention & control , Surveys and QuestionnairesABSTRACT
People with Down syndrome (DS) have a unique medical profile which may impact views of health. We aimed to study the use of global health measures for DS in a national cohort. We prospectively surveyed parents of individuals with DS from the DS-Connect® registry with validated Patient Reported Outcomes Measurement Information System (PROMIS)® instruments of global health. Analyses included use of scoring manuals and the PROMIS® scoring service, descriptive statistics, and t-tests. We received completed surveys from 223 parents of individuals with DS; previously published limitations of the instrument in this population were shown again. T-scores differed from the available comparative standardized scores to these measures from PROMIS® reference population on Fatigue (p < 0.001) and Global Health (p < 0.001), but not on Pain Interference (p = 0.41).
Subject(s)
Down Syndrome , Quality of Life , Humans , Global Health , Down Syndrome/diagnosis , Down Syndrome/epidemiology , Patient Reported Outcome Measures , Surveys and QuestionnairesABSTRACT
BACKGROUND: Coaching has been shown to decrease physician burnout; however, coachee outcomes have been the focus. We report the impact of coaching on women-identifying surgeons who participated as coaches in a 9-month virtual program. METHODS: A coaching program was implemented in the Association of Women Surgeons (AWS) to determine the effects of coaching on well-being and burnout from 2018 to 2020. AWS members volunteered and completed training in professional development coaching. Pre- and post-study measures were assessed, and bivariate analysis performed based on burnout and professional fulfillment score. RESULTS: Seventy-five coaches participated; 57 completed both pre- and post-study surveys. There were no significant changes in burnout or professional fulfillment including the Positive Emotion, Engagement, Relationship, Meaning, and Accomplishment scale, hardiness, self-valuation, coping, gratitude, or intolerance of uncertainty scores from baseline to post-survey. On bivariate analysis, hardiness was associated with lower burnout throughout the duration of the program. Coaches with lower burnout at the end of the program met with their coachee more frequently than coaches with higher burnout [mean (SD) 3.95(2.16) versus 2.35(2.13) p = 0.0099]. DISCUSSION: Burnout and professional fulfillment demonstrated no change in women surgeons who participated as professional development coaches. Those with lower burnout and higher professional fulfillment at the end of the program were found to have higher hardiness, which may be worth future investigation. CONCLUSIONS: Acquisition of coaching skills did not directly improve well-being in faculty who participated in a resident coaching program. Future studies would benefit from control groups and exploration of qualitative benefits of coaching.
Subject(s)
Burnout, Professional , Mentoring , Surgeons , Humans , Female , Surgeons/education , Surveys and Questionnaires , Burnout, Professional/prevention & control , Personal SatisfactionABSTRACT
BACKGROUND: Nurse care managers (NCM) operate through care management programs to provide care for persons living with dementia (PLWD) and interact regularly with their family caregivers; however, most do not receive formal instruction in dementia care or caregiver support. CRESCENT (CaReEcoSystem primary Care Embedded demeNtia Treatment) is a telephone-based dementia care intervention adapted from the Care EcoSystem model designed to equip NCMs with these tools. For this study, we aimed to measure intervention fidelity and understand how dementia care training impacted NCMs' provision of dementia care management services during interactions with caregivers of PLWD. METHODS: We recruited 30 active NCMs; 15 were randomly assigned to receive training. For each nurse, we randomly selected 1-3 patients with a diagnosis of dementia in each nurse's care during January-June 2021 for a total of 54 medical charts. To assess training uptake and fidelity, we identified documentation by NCMs of CRESCENT protocol implementation in the medical records. To understand how the training impacted the amount and types of dementia care management services provided in interactions with family caregivers, we compared attention to key dementia topic areas between trained NCMs (intervention) and untrained NCMs (control). RESULTS: Within the trained group only, community resources for PLWD, followed by safety, medication reconciliation, and advanced care planning topic areas were addressed most frequently (> 30%), while behavior management was addressed least frequently (12%). Trained NCMs were more likely to document addressing aspects of caregiver wellbeing (p = 0.03), community resources (p = 0.002), and identification of behavior (p = 0.03) and safety issues (p = 0.02) compared to those without training. There was no difference between groups in the amount of care coordination provided (p = 0.64). CONCLUSION: Results from this study demonstrate that focused dementia care training enriches care conversations in important topic areas for PLWD and family caregivers. Future research will clarify how best to sustain and optimize high quality dementia care in care management programs with special attention to the NCM-family caregiver relationship. TRIAL NUMBER: NCT04556097.
Subject(s)
Dementia , Education, Nursing , Humans , Caregivers/education , Dementia/diagnosis , Dementia/therapy , Ecosystem , Health ServicesABSTRACT
Hospitals are an important setting to provide harm reduction services to people who inject drugs (PWID). This study aimed to characterize PWID's injection practices, the perceived risk and benefits of those practices, and the immediate IDU risk environment among individuals seeking medical care. Surveys were administered to 120 PWID seeking medical services at an urban hospital. Poisson regression was used to examine the effect of perceived risk or importance of injection practices on the rate of engaging in those practices. The mean participant reported "often" reusing syringes and "occasionally" cleaning their hands or skin prior to injection. 78% of participants reported that syringes were extremely risky to share, which was associated with lower likelihood of sharing them (ARR: 0.59; 95% CI: 0.36-0.95). 38% of participants reported it was extremely important to use a new syringe for each injection, and these participants were more likely to report never reusing syringes >5 times (ARR: 1.62, 95% CI: 1.11-2.35). Other factors that may influence injection practices-including fear of arrest, withdrawal, lack of access to supplies, and injecting outdoors-were common among participants. In conclusion, practices that place PWID at risk of injury and infection are common, and risk-benefit perception is associated with some, but not all, injection practices. Injecting in challenging environments and conditions is common. Therefore, harm reduction counseling in medical settings must be accompanied by other strategies to reduce risk, including facilitating access to supplies. Ultimately, structural interventions, such as affordable housing, are needed to address the risk environment.
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BACKGROUND: Down syndrome is the most common liveborn genetic condition. However, there are no surveys measuring societal services and supports for people with Down syndrome. We developed a questionnaire so that initiatives could be targeted towards countries most in need of assistance. METHOD: We formed a geographically diverse group of physicians, family members of people with Down syndrome, and members of Down syndrome not-for-profit organisations to create a survey of societal services and supports. We used a modified Delphi method and disseminated the survey to Down syndrome non-profit organisations worldwide. RESULTS: Our survey consists of 61 items categorised within five domains: Education, Community Inclusion, Independence, Healthcare, and Social and Policy Issues. CONCLUSIONS: We developed a survey to measure societal services and supports available to people with Down syndrome as perceived by organisational leaders. Our methods might serve as a blueprint for other populations of people with intellectual and developmental disabilities.
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Down Syndrome , Intellectual Disability , Humans , Surveys and Questionnaires , Delivery of Health Care , FamilyABSTRACT
BACKGROUND: Audio recordings of oncology clinic discussions can help patients retain and understand information about their disease and treatment decisions. Access to this tool relies on acceptance of recordings by oncologists. This is the first study to evaluate experience and attitudes of oncologists toward patients recording clinic visits. METHODS: Medical, radiation, and surgicalâ¯oncologists from 5 US cancer centers and community affiliates were surveyed to evaluate clinicians'â¯experience, beliefs, and practices regarding patient-initiated recordings. RESULTS: Amongâ¯360â¯oncologists (69%â¯response rate), virtually all (93%) have experienced patients seeking to record visits. Although 75%â¯are comfortableâ¯with recording, 25% are uncomfortableâ¯and 56% report concerns ranging fromâ¯less thorough discussionsâ¯to legal liability. Most (85%) always agree when patients ask to record, butâ¯15% never or selectively allow recording.â¯Althoughâ¯51%â¯believe recordingâ¯isâ¯positive for the patient-physician relationship, a sizable minority report that it canâ¯lead to less detailed conversationsâ¯(28%) orâ¯avoidance of difficult topics, including prognosisâ¯(33%). Views did not vary based onâ¯subspecialty, practice setting, orâ¯geographicâ¯region, but older age and years in practice were associated with more positiveâ¯views of recording. The majority of clinicians (72%) desireâ¯institutional policies to govern guidelines about recordings. CONCLUSIONS: Most oncologists are comfortable with patient requests to record visits, but a sizable minority remain uncomfortable, and access toâ¯recordingâ¯varies solelyâ¯on physician preference. This difference in care delivery may benefit from institutional policies that promote access while addressing legitimate physician concerns over privacy and appropriate use of recordings.
Subject(s)
Medical Oncology , Oncologists , Ambulatory Care , Humans , Physician-Patient Relations , Surveys and QuestionnairesABSTRACT
BACKGROUND: Coaching has been shown to improve resident well-being; however, not all benefit equally. OBJECTIVE: Assess predictors of changes in resident physician well-being and burnout in a multisite implementation of a Professional Development Coaching Program. DESIGN: Pre- and post-implementation surveys administered to participant cohorts at implementation sites in their intern year. Effect size was calculated comparing pre- and post-intervention paired data. PARTICIPANTS: In total, 272 residents in their intern year at five internal medicine residency programs (Boston Medical Center, University Hospitals Cleveland Medical Center, Duke University, Emory University, Massachusetts General Hospital). Analyses included 129 residents with paired data. INTERVENTIONS: Interns were paired with a faculty coach trained in positive psychology and coaching skills and asked to meet quarterly with coaches. MAIN MEASURES: Primary outcomes included Maslach Burnout Inventory depersonalization (DP) and emotional exhaustion (EE) subscales, and the PERMA well-being scale. Key predictors included site, demographics, intolerance of uncertainty, hardiness-resilience, gratitude, and coping. Program moderators included were reflection, goal setting, and feedback. KEY RESULTS: Well-being (PERMA) changed from baseline to follow-up in all participants; females showed a decline and males an increase (-1.41 vs. .83, p = 0.04). Self-reflection was associated with positive change in PERMA (mean positive change 1.93, p = 0.009). Burnout (EE) declined in non-Hispanic white residents vs. Black/Asian/Hispanic/other residents (-1.86, p = 0.021). Burnout improved with increased goal setting. CONCLUSION: Coaching programs should consider tailored approaches to support residents whose well-being is impacted by gender and/or race, and who have higher intolerance of uncertainty and lower resilience at baseline. Coaching skills of goal setting and reflection may positively affect interns and teach coping skills.
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Burnout, Professional , Internship and Residency , Mentoring , Burnout, Professional/prevention & control , Burnout, Professional/psychology , Female , Humans , Male , Massachusetts , Surveys and QuestionnairesABSTRACT
BACKGROUND: As the United States population is aging, there is a chronic shortage of geriatrics- and gerontology- trained clinicians despite a variety of incentives. With primary care clinicians also in short supply, health systems are trying to cope with the increasing demand for care for older adults PURPOSE: The purpose of this study was to examine respondents' willingness to recommend their career to others and beliefs about changes necessary to enhance the supply of appropriately prepared clinicians METHODS: This study used a national survey of a stratified sample of 276 physicians and 134 nurse practitioners working in primary care and geriatric practices. FINDINGS: Among nurse practitioner respondents, 29% would "definitely" recommend a career as a geriatrician vs. seventeen percent of physicians; thirteen percent of physicians would "definitely" recommend a career as a nurse practitioner specializing in adult/gerontology vs. 42% for nurse practitioners. Those trained in geriatrics were more likely to recommend a career in the field. DISCUSSION: Nurse practitioners and physicians differ in their willingness to recommend careers in in gerontology and geriatrics, but less than a majority would strongly recommend careers in either specialty. Based on clinical reports, substantial reforms in payment and reimbursement for services may be necessary to bolster the geriatric field's attractiveness, and better prepare the workforce to care for older adults.
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Geriatrics , Nurse Practitioners , Physicians , Aged , Aging , Humans , United States , WorkforceABSTRACT
BACKGROUND: Views can be collected from individuals (self-report) or others on their behalf (proxy-report). OBJECTIVE: We aimed to review the literature on methods and statistical approaches used to evaluate observer versus self-report responses from individuals with intellectual disability or Down syndrome. METHODS: A series of key questions related to statistical approaches and data collection methods were formulated a priori to inform the search strategy and review process. These addressed the topics of self-report in individuals with intellectual disability, including Down syndrome. Using the National Library of Medicine database, PubMed, detailed literature searches were performed. The quality of available evidence was then evaluated, the existing literature was summarised, and knowledge gaps and research needs were identified. RESULTS: Fifty relevant original articles were identified which addressed at least one key question. Study details, including: research design, internal validity, external validity, and relevant results are presented. Review of studies of individuals with intellectual disability which used a variety of statistical approaches showed mixed agreement between self-report and proxy-report. CONCLUSION: Few studies identified to-date have used self-report from individuals with Down syndrome, but lessons from the existing intellectual disability literature can guide researchers to incorporate self-report from individuals with Down syndrome in the future.
Subject(s)
Down Syndrome , Intellectual Disability , Humans , Proxy , Self ReportABSTRACT
The COVID-19 pandemic necessitated a rapid transition from in-person office visits to virtual visits in the Down syndrome specialty program at Massachusetts General Hospital (MGH DSP). We describe the clinic transition to virtual visits in April 2020 and reflect on our six-month experience in virtual visits. Clinic metrics were tracked. Electronic survey responses were collected from caregivers attending virtual visits. Input from the MGH DSP team was collected. From April to September 2020, we maintained patient volume (45 visits per month) and overall satisfaction score (6.7 out of 7) following a sudden, unanticipated transition to virtual visits. Survey of 17 caregivers attending virtual visits found that most were equipped with technology, had access to a private location, and most were able to access visit without any limitations. Caregivers appreciated the convenience of virtual visits but sometimes missed the personal connection of an in-person visit. Overall, though, virtual visits were frequently viewed as no different than office visits. Team members identified benefits and challenges of virtual visits, as well as lessons learned from this transition. We were able to maintain multidisciplinary, specialty care with optimal caregiver feedback and sustained number of patient visits.
Subject(s)
Down Syndrome/epidemiology , Practice Patterns, Physicians'/trends , Telemedicine/methods , Telemedicine/statistics & numerical data , Adolescent , Adult , Caregivers , Child , Child, Preschool , Down Syndrome/diagnosis , Down Syndrome/therapy , Female , Humans , Infant , Interdisciplinary Communication , Male , Patient Care Team , User-Computer Interface , Young AdultABSTRACT
PURPOSE: We sought to determine if a novel online health tool, called Down Syndrome Clinic to You (DSC2U), could improve adherence to national Down syndrome (DS) guidelines. We also sought to determine if primary care providers (PCPs) and caregivers are satisfied with this personalized online health tool. METHODS: In a national, randomized controlled trial of 230 caregivers who had children or dependents with DS without access to a DS specialist, 117 were randomized to receive DSC2U and 113 to receive usual care. The primary outcome was adherence to five health evaluations indicated by national guidelines for DS. DSC2U is completed electronically, in all mobile settings, by caregivers at home. The outputs-personalized checklists-are used during annual wellness visits with the patient's PCP. RESULTS: A total of 213 participants completed a 7-month follow-up evaluation. In the intention-to-treat analysis, the intervention group had a 1.6-fold increase in the number of indicated evaluations that were recommended by the primary care provider or completed compared with controls. Both caregivers and PCPs reported high levels of satisfaction with DSC2U. CONCLUSIONS: DSC2U improved adherence to the national DS health-care guidelines with a novel modality that was highly valued by both caregivers and PCPs.
Subject(s)
Down Syndrome , Caregivers , Child , Down Syndrome/diagnosis , Health Personnel , Humans , Personal SatisfactionABSTRACT
BACKGROUND: Population aging and physician shortages have motivated recommendations of increased use of registered nurses in care provision; little is known about RN and NP employment in primary care and geriatric practices or service types each provide. PURPOSE: Determine current RN and NP employment frequency in practices in the U.S., identify services provided by RNs, and whether NP presence in practice is associated with the types and frequency of services provided by RNs. METHODS: National survey of 410 primary care and geriatric clinicians. FINDINGS: Only half of practices employed RNs. RNs most frequently provide teaching or education for chronic disease management. RNs provide significantly more primary care and geriatric services when practices employed a NP. DISCUSSION: Reasons for RN underuse in practices should be identified, clinical placements in such practices should increase, and NP education programs should include care models using RNs to their full scope of practice.