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The Development and Evaluation of an Online Healthcare Toolkit for Autistic Adults and their Primary Care Providers.

ABSTRACT: BACKGROUND:The healthcare system is ill-equipped to meet the needs of adults on the autism spectrum. OBJECTIVE:Our goal was to use a community-based participatory research (CBPR) approach to develop and evaluate tools to facilitate the primary healthcare of autistic adults. DESIGN:Toolkit development included cognitive interviewing and test-retest reliability studies. Evaluation consisted of a mixed-methods, single-arm pre/post-intervention comparison. PARTICIPANTS:A total of 259 autistic adults and 51 primary care providers (PCPs) residing in the United States. INTERVENTIONS:The AASPIRE Healthcare toolkit includes the Autism Healthcare Accommodations Tool (AHAT)-a tool that allows patients to create a personalized accommodations report for their PCP-and general healthcare- and autism-related information, worksheets, checklists, and resources for patients and healthcare providers. MAIN MEASURES:Satisfaction with patient-provider communication, healthcare self-efficacy, barriers to healthcare, and satisfaction with the toolkit's usability and utility; responses to open-ended questions. KEY RESULTS:Preliminary testing of the AHAT demonstrated strong content validity and adequate test-retest stability. Almost all patient participants (>94 %) felt that the AHAT and the toolkit were easy to use, important, and useful. In pre/post-intervention comparisons, the mean number of barriers decreased (from 4.07 to 2.82, p?

SUBMITTER: Nicolaidis C

PROVIDER: S-EPMC5023610 | biostudies-literature | 2016 Oct

REPOSITORIES: biostudies-literature

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The Development and Evaluation of an Online Healthcare Toolkit for Autistic Adults and their Primary Care Providers.

Nicolaidis Christina C Raymaker Dora D McDonald Katherine K Kapp Steven S Weiner Michael M Ashkenazy Elesia E Gerrity Martha M Kripke Clarissa C Platt Laura L Baggs Amelia A

Journal of general internal medicine 20160606 10

<h4>Background</h4>The healthcare system is ill-equipped to meet the needs of adults on the autism spectrum.<h4>Objective</h4>Our goal was to use a community-based participatory research (CBPR) approach to develop and evaluate tools to facilitate the primary healthcare of autistic adults.<h4>Design</h4>Toolkit development included cognitive interviewing and test-retest reliability studies. Evaluation consisted of a mixed-methods, single-arm pre/post-intervention comparison.<h4>Participants</h4>A ...[more]

PMID: 27271730

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Project description:BackgroundWe previously found that autistic adults who received care through a primary care embedded specialized clinic, called the Center for Autism Services and Transition (CAST), had higher satisfaction, continuity of care, and preventive care use than national samples of autistic adults.ObjectiveExamine the impact of CAST on healthcare utilization and expenditures.DesignRetrospective study of medical billing data.SampleCAST patients (N = 490) were propensity score matched to Medicare-enrolled autistic adults (N = 980) and privately insured autistic adults (N = 980) using demographic characteristics. The median age of subjects was 21 years, 79% were male, and the median duration of observation was 2.2 years.Main measuresWe quantified expenditures and utilization for primary care; emergency department (ED) visits; inpatient hospitalizations; mental health admissions; and outpatient visits.Key resultsCAST patients had the highest primary care utilization and expenditures. However, CAST patients had significantly lower expenditures than Medicare-enrolled autistic adults for mental health admissions ($1074 vs $1903), outpatient visits ($1671 vs $2979), and total expenditures ($5893 vs $6987), as well as 57% fewer inpatient hospitalizations. Compared to privately insured autistic adults, CAST patients had significantly lower expenditures for mental health admissions ($1074 vs $1362), inpatient hospitalizations ($3851 vs $4513), and outpatient visits ($1671 vs $6070), as well as 16% fewer inpatient hospitalizations, 24% fewer ED visits, and 50% fewer outpatient visits. On average, CAST patients had more ED visits, mental health admissions, and outpatient visits than Medicare-enrolled autistic adults and more mental health admissions than privately insured autistic adults.ConclusionsAlthough CAST patients had greater primary care utilization and expenditures, our findings suggest embedding specialized clinics within broader primary care settings could be an alternative to current standards of care and may reduce expenditures and healthcare utilization in other areas, particularly relative to standard care for privately insured autistic adults.

Project description:BACKGROUND:In response to the rising burden of cardiovascular risk factors, the Malaysian government has implemented Enhanced Primary Healthcare (EnPHC) interventions in July 2017 at public clinic level to improve management and clinical outcomes of type 2 diabetes and hypertensive patients. Healthcare providers (HCPs) play crucial roles in healthcare service delivery and health system reform can influence HCPs' job satisfaction. However, studies evaluating HCPs' job satisfaction following primary care transformation remain scarce in low- and middle-income countries. This study aims to evaluate the effects of EnPHC interventions on HCPs' job satisfaction. METHODS:This is a quasi-experimental study conducted in 20 intervention and 20 matched control clinics. We surveyed all HCPs who were directly involved in patient management. A self-administered questionnaire which included six questions on job satisfaction were assessed on a scale of 1-4 at baseline (April and May 2017) and post-intervention phase (March and April 2019). Unadjusted intervention effect was calculated based on absolute differences in mean scores between intervention and control groups after implementation. Difference-in-differences analysis was used in the multivariable linear regression model and adjusted for providers and clinics characteristics to detect changes in job satisfaction following EnPHC interventions. A negative estimate indicates relative decrease in job satisfaction in the intervention group compared with control group. RESULTS:A total of 1042 and 1215 HCPs responded at baseline and post-intervention respectively. At post-intervention, the intervention group reported higher level of stress with adjusted differences of - 0.139 (95% CI -0.266,-0.012; p = 0.032). Nurses, being the largest workforce in public clinics were the only group experiencing dissatisfaction at post-intervention. In subgroup analysis, nurses from intervention group experienced increase in work stress following EnPHC interventions with adjusted differences of - 0.223 (95% CI -0.419,-0.026; p = 0.026). Additionally, the same group were less likely to perceive their profession as well-respected at post-intervention (β = - 0.175; 95% CI -0.331,-0.019; p = 0.027). CONCLUSIONS:Our findings suggest that EnPHC interventions had resulted in some untoward effect on HCPs' job satisfaction. Job dissatisfaction can have detrimental effects on the organisation and healthcare system. Therefore, provider experience and well-being should be considered before introducing healthcare delivery reforms to avoid overburdening of HCPs.

Project description:IntroductionIn North America, drug overdose deaths are reaching unprecedented levels, largely driven by increasing prescription opioid-related deaths. Despite the development of several opioid guidelines, prescribing behaviours still contribute to poor patient outcomes and societal harm. Factors at the provider and system level may hinder or facilitate the application of evidence-based guidelines; interventions designed to address such factors are needed.Methods and analysisUsing implementation science and behaviour change theory, we have planned the development and evaluation of a comprehensive Opioid Self-Assessment Package, designed to increase adherence to the Canadian Opioid Guideline among family physicians. The intervention uses practical educational and self-assessment tools to provide prescribers with feedback on their current knowledge and practices, and resources to improve their practice. The evaluation approach uses a pretest and post-test design and includes both quantitative and qualitative methods at baseline and 6 months. We will recruit a purposive sample of approximately 10 family physicians in Ontario from diverse practice settings, who currently treat patients with long-term opioid therapy for chronic pain. Quantitative data will be analysed using basic descriptive statistics, and qualitative data will be analysed using the Framework Method.Ethics and disseminationThe University Health Network Research Ethics Board approved this study. Dissemination plan includes publications, conference presentations and brief stakeholder reports. This evidence-informed, theory-driven intervention has implications for national application of opioid quality improvement tools in primary care settings. We are engaging experts and end users in advisory and stakeholder roles throughout our project to increase its national relevance, application and sustainability. The performance measures could be used as the basis for health system quality improvement indicators to monitor opioid prescribing. Additionally, the methods and approach used in this study could be adapted for other opioid guidelines, or applied to other areas of preventive healthcare and clinical guideline implementation processes.

Project description:BackgroundAutism refers to a neurodevelopmental condition with characteristic impairments in social interaction and communication, restrictive and repetitive behaviors, as well as difficulties in sensory information processing and daily living skills. Even though symptoms persist from early childhood throughout the lifespan and often require long-term support, there is a lack of mental health services that sufficiently meet the needs of autistic adults. Previous evidence suggested individual, professional and structural barriers to healthcare for autistic adults. Here, using a peer research approach, we sought to systematically investigate barriers and needs in mental healthcare of autistic adults in Germany at the three relevant levels (individual, professional, structural) and from three relevant perspectives (autistic adults, relatives and healthcare providers), in order to obtain specific recommendations for optimized healthcare.MethodsMaximum variation sampling was used to account for the complexity of the research field. Semi-structured, open-ended interviews were conducted with autistic adults (n = 15) and focus groups with relatives/partners (n = 12), and healthcare providers of several professions (n = 15). Data analysis was performed using the codebook approach of thematic analysis.ResultsPoor mental healthcare of autistic adults in Germany was characterized by six central and overarching themes: (i) lack of knowledge about autism, (ii) a need for increased participation/involvement, (iii) consideration of autism-specific needs in treatment, (iv) lack of services, (v) limited access to services, and (vi) improvement of stakeholder collaboration. Themes were similarly reported across participants, emphasizing dissatisfaction in all stakeholders.ConclusionsWe identified major barriers to mental healthcare for autistic adults in Germany that affect autistic adults, but are also of concern to relatives and healthcare providers. Our results point to specific and generic areas for improvement, independent of stakeholder perspectives, which could guide future development of needs- and evidence-based services, recommendations and guidelines of mental healthcare for people with autism across the lifespan.Trial registrationThis study protocol was preregistered at the Open Science Framework ( https://osf.io/5x8pg ).

Project description:BackgroundExercise is now recommended as a primary treatment for mild-moderate depression in Canada. The 'Exercise and Depression Toolkit' was developed to help health care providers (HCP) integrate these treatment guidelines into practice. The purpose of this study was to evaluate acceptability and perceived effectiveness of the toolkit in practice by HCPs working with individuals with depression.MethodsA case study design was utilized. The toolkit was given to 6 HCPs to use in practice for 4 weeks. Pre- and post-intervention phone interviews were conducted, and weekly logs were provided to track use and satisfaction of interactions with individuals with depression when using the toolkit. The study was conceptually guided by a hybrid theoretical approach using the Diffusion of Innovation Theory and the Theoretical Framework of Acceptability.ResultsAll HCPs used the toolkit at least once. Participants viewed their interactions when using the toolkit to be successful (considering individuals' receptiveness, its usefulness and general satisfaction.) The average success score for all participants was 5.5/7. HCPs found the toolkit to be acceptable. All participants (n = 6) viewed the toolkit as having relative advantage in helping them to discuss exercise with individuals with depression, and as relatively simple and easy to use (not complex) and adaptable to their practice needs (having trialability). Participants liked the toolkit and had mostly positive things to say about it. Participants had mixed feelings about whether changes in the people they worked with (such as mood and activity levels) could be observed (observability) and whether the toolkit changed their belief in their ability to recommend or discuss exercise (self-efficacy). Recommended dissemination strategies were adopted in promoting the toolkit.ConclusionsFuture work should address observability and the ability for health care providers to see other providers using it, as well as effectiveness considering outcomes for people with depression such as mood and activity changes. The results of this initial evaluation seem promising for uptake and future adoption of the toolkit by health care providers working with adults with depression in Canada.

Project description:BackgroundExternal supervision of primary health care facilities to monitor and improve services is common in low-income countries. Currently there are no tools to measure the quality of support in external supervision in these countries.AimTo develop a provider-reported instrument to assess the support delivered through external supervision in Rwanda and other countries.Methods"External supervision: Provider Evaluation of Supervisor Support" (ExPRESS) was developed in 18 steps, primarily in Rwanda. Content validity was optimised using systematic search for related instruments, interviews, translations, and relevance assessments by international supervision experts as well as local experts in Nigeria, Kenya, Uganda and Rwanda. Construct validity and reliability were examined in two separate field tests, the first using exploratory factor analysis and a test-retest design, the second for confirmatory factor analysis.ResultsWe included 16 items in section A ('The most recent experience with an external supervisor'), and 13 items in section B ('The overall experience with external supervisors'). Item-content validity index was acceptable. In field test I, test-retest had acceptable kappa values and exploratory factor analysis suggested relevant factors in sections A and B used for model hypotheses. In field test II, models were tested by confirmatory factor analysis fitting a 4-factor model for section A, and a 3-factor model for section B.ConclusionsExPRESS is a promising tool for evaluation of the quality of support of primary health care providers in external supervision of primary health care facilities in resource-constrained settings. ExPRESS may be used as specific feedback to external supervisors to help identify and address gaps in the supervision they provide. Further studies should determine optimal interpretation of scores and the number of respondents needed per supervisor to obtain precise results, as well as test the functionality of section B.

Dataset Information

The Development and Evaluation of an Online Healthcare Toolkit for Autistic Adults and their Primary Care Providers.

Publications

The Development and Evaluation of an Online Healthcare Toolkit for Autistic Adults and their Primary Care Providers.

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