Running head: PRIMARY PROVIDER EDUCATION AND ASD

Primary Provider Education Regarding Adults with Autism Spectrum Disorder
Geri Chesebrough
Arizona State University

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CHAPTER 1: INTRODUCTION
Background and Significance
In the Institute of Medicine Report: The Future of Disability in America (2007) the
challenge of transitioning from pediatric to the adult care system for the disabled was identified
as an issue that needs to be addressed (Perrin & Hicks, 2008). According to Johnson and Carter
(2011), a goal of Healthy People 2020 is to eliminate health disparities. Many of the challenges
in accessing healthcare for adults with autism are directly related to the symptoms of Autism
Spectrum Disorder (ASD). These symptoms include impairments in spoken as well as nonverbal
communication, difficulty in understanding emotions and altered sensory perception (Johnson &
Carter, 2011). As an example, sensory impairment can impact feeding issues due to touch, taste
or smell of certain foods. This can lead to a diet that is limited in variety and nutritional value
(Tyler, et al., 2011). In a study by Tyler, et al. (2011), the investigators compared two groups of
young adults; one cohort had autism and the other did not. In the cohort with autism rates of
chronic disease were 34.9% for obesity compared to 30.3% for the control group, 31.5% for
hyperlipidemia compared to 18.9% for the control group, 22.2% for constipation compared to
7.3% for the control group, and 22.2% for epilepsy compared to 2.9% for the control group
(Tyler, et al., 2011). Without early intervention, adults with autism are likely to have chronic
health conditions like diabetes, heart disease, heart failure, arthritis, and cancer. Nicolaidis,
Kripke, and Raymaker, (2014), also found autistic adults have high rates of epilepsy,
gastrointestinal disorders, feeding and nutritional problems, metabolic syndrome, anxiety,
depression, and sleep disturbances. The literature reports that healthcare providers are unable to
accommodate to the needs of this population.

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Adults with autism report that visits with their health care providers are impaired due to
providers who were unable to accommodate communication, sensory integration, and executive
functioning resulting in poor outcomes (Nicolaidis, Kripke, & Raymaker, 2014). Adult primary
providers have confusion about who should be responsible for managing the care and assume the
mental health provider or community disability team will do so (Webb & Stanton, 2009).
Additionally, adults with ASD have noted that their providers make assumptions about the
autistic adult’s ability to understand what is being said and to follow through with care because
they are often able to speak at a higher level than their ability to process what they are being told
and to follow through with a plan of care. Nicolaidis et al. (2015) broke down the challenges that
impact healthcare for those with autism. Autism-related factors include verbal communication
challenges, sensory sensitivities, challenges with body awareness, the need for consistency, slow
processing speed, atypical nonverbal communication and challenges with organization.
An option that is gathering interest is the medical home model. Rogers and Zeni (2015)
discussed how this model has been successful in meeting the needs of children with chronic
health needs. The medical home model is designed as a system where healthcare services are
easily available and meet the needs of the client and their family. The care in a medical home is
coordinated and comprehensive (American Academy of Pediatrics [AAP], 1992). The
complexity of autism as a lifelong challenge lends itself well to this model. Noted barriers to
establishing a medical home include providers who do not spend enough time with their clients
and the providers who also lack adequate information about ASD (Rogers & Zeni, 2015).
Khulthau, Warfield, Hurson, Delahave and Crossman (2015) found that even pediatric providers
considered to be experts in ASD had done little to create a smooth transition to adult care for
their patients. According to this study, only 21.1% of youth with ASD receive any transition

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planning services. It was also noted that those with disabilities receive routine preventative care
less often than the neurotypical population.
In 2005, the United States Department of Health and Human Services reported that in
women with disabilities over the age of 40, only 65% received a mammogram compared to 75%
of women without disabilities. In children and adults with disabilities, 37% reported to have
annual dental visits compared to 46% of those without disabilities (Bruder, Kerins, Mazzarella,
Sims, & Stein, 2012). There are many reasons for this disparity in access to healthcare with
physician training, comfort level and reimbursement as the main factors (Bruder, et al., 2012).
Research has been done that looks at the experiences of primary care providers to better
understand this issue. Bruder, et al. (2012) reported that over half of the physicians that they
surveyed were interested in having more training in the form of workshops or conferences.
Providers lack knowledge about ASD. Because of this knowledge deficit they incorrectly assume
that they have the necessary skills or needs to work with this population. Providers have an
unwillingness to communicate in writing and may not open to considering accommodations and
incorporating supporters. Lost revenue is one reason that providers do not want to take on more
complex patients like those with ASD (Warfield, Crossman, Delahaye, Der Weerd, & Kuhlthau,
2015). This is an issue that needs to be addressed at the state and national policy level to
incentivize providers to care for these adults. Warfield, et al. (2015) reported that challenges at
the practice and provider level include scheduling issues, family involvement, physical
environment, and communication challenges. Survey respondents reported that they had
virtually no education or experience in caring for this population.
Problem Statement

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Autism Spectrum Disorder (ASD) is “a developmental disability that is caused by
differences in how the brain functions. People with ASD may communicate, interact, behave,
and learn in different ways” (Autism and Developmental Disabilities Monitoring Network
[ADDM Netword], 2016, p. 1). According to the Centers for Disease Control (CDC), in 2012 the
incidence of children with autism was 1.47% of the total population (CDC, 2016). This is an
increase from the year 2000 when the incidence of autism was 0.67%. It is estimated that 1% of
adults currently meet the criteria for ASD (Nicolaidis, Kripke, & Raymaker, 2014). Among
children identified with ASD, about a third also had an intellectual disability. In Arizona, the
CDC reports the diagnosis rate is even higher with 1.56% of children diagnosed with autism
(ADDM Network, 2016). Due to this increase in diagnosis, there is a larger cohort of children
who have or will soon be reaching adulthood (Kuhlthau, Warfield, Hurson, Delahave, &
Crossman, 2015; Nicolaidis, Kripke, & Raymaker, 2014).
May barriers exist for adult with ASD including: adult primary care providers who do not
have adequate training in caring for adults with autism, nor do they have an interest in receiving
such training due to cost issues and extended length of appointments Bruder, Kerins, Mazzarella,
Sims, and Stein (2012). Adults with autism identify the waiting room and waiting time as
barriers to care (Saqr, Y., Braun, E., Porter, K., Barnette, D., and Hanks, C., 2018). Autistic
adults report healthcare providers make incorrect assumptions about their abilities and needs and
are unwilling to accommodate written communication. According to Sarris (2016), in a survey of
adult care providers performed by Kaiser Permanente, 79% rate their knowledge and skills with
autism as fair to poor. Nicolaidis, et al. (2014) found that in general adults with autism did not
receive adequate health care, tend to use the emergency room as a source of primary care, do not

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use preventive care services, are generally dissatisfied with healthcare, do not perform self-care
activities, and face significant challenges in accessing healthcare.
It was reported by a parent in the Phoenix area how difficult it is to find an adult primary
care provider for her son with autism as he was turning eighteen. When searching for a provider
using her healthcare insurance company, the only listed providers with an understanding of
autism were pediatricians (G.C., personal communication, 04/12/18). The author interviewed
pediatric and adult primary care physicians in the Phoenix area who are familiar with ASD and
they have confirmed the shortage of adult primary care providers who are ready to care for adults
(G. C., personal communication, 04/12/18). A review of the literature found that most of the
articles are focused on the pediatric autism population. In searching the literature, there was
confirmation that this is indeed a national issue that needs to be addressed as the incidence of
autism has continued to rise. The lack of adult primary care providers for adults with autism
impacts the health of this population.
Compounding the problem of a lack of adult primary care providers is the fact that those
with autism are prone to certain health problems due to poor self-care. Those with disabilities are
more likely to use drugs and alcohol, are less likely to receive routine oral care, engage in
physical exercise and to be overweight or obese (Johnson & Carter, 2011). Autism is associated
with a reduced life expectancy of about 2-3 times higher than matched peers in the general
population (Nicolaidis, Kripke, & Raymaker, 2014).
This practice gap impacts the healthcare system at different levels. Adults with ASD
often do not have access to a primary care provider who is comfortable in caring for adults with
autism or understand the specific healthcare needs of this population. Without a primary care
provider, many adults in this population will not seek any preventative/wellness care and are

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likely to use the emergency department as their primary source of healthcare (Liu, Pearl, Kong,
Leslie, & Murray, 2017).
This problem affects adults with autism and young adults who are aging out of pediatric
care. It impacts pediatric and adult health providers. It also impacts family members and
caregivers of adults with autism. A lack of primary care providers also directly impacts the
health and wellness of these individuals. It affects the costs both directly and indirectly to all
who pay taxes and pay health insurance premiums as adults with autism are more apt to use the
emergency department as their primary source for receiving healthcare. Additionally, it affects
people with autism by a decreased quality of life, an increase in risk for chronic health conditions
and also an increased chance of a shortened lifespan (Nicolaidis, et al., 2014).
PICOT Question
The background and significance outlined in this inquiry has led to the clinically relevant
PICOT question, “Among primary care providers (P) how does education on autism spectrum
disorders in adults (I) compared to no education (C) affect knowledge, attitudes and beliefs in
providing care to this population (O)?
Literature Review
Databases searched for the literature review included Cumulative Index of Nursing and
My Allied Health Literature (CINAHL), PubMed and PsycINFO. Key words included; adult,
autism spectrum disorder, autism spectrum disorders, autistic disorder, healthcare, nurse
practitioners, primary care, provider, and physicians. The initial search of autism, adult, and
healthcare yielded 40 results in CINAHL (Appendix A), 13 results in PsycINFO (Appendix B),
and 12 results in PubMed (Appendix C).

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Exclusion criteria included work published before 2012, studies not available in English,
and unpublished works. After appraising 41 articles, ten have been selected to be included in
this examination of evidence. Studies that were discarded were informational but did not provide
any research data or the data was not conclusive. Those studies that were included involved older
adolescents and adults, autism and other developmental disabilities. The selected papers
evaluated the relationship between healthcare provider experience and understanding of autism
in providing care to this population.
Ten studies were selected for this review including one non-randomized control study,
one systematic review, two exploratory retrospective reviews, two cross-sectional data surveys,
one intervention/longitudinal study and three qualitative studies. Levels of evidence range from
three to six according to the Rating System for the Hierarchy of Evidence for
Intervention/Treatment Questions (Appendix D). The Picot question being studied is focused on
patient and provider experiences and has not generated randomized control trials (RCT’s). The
age ranges of the participants included adults with autism 18 years and older. One study looked
at transitional planning for adult primary care on focused on 12-21-year-old participants. Most
studies relied on self-identification or chart review for diagnosis of ASD and did not confirm
through evaluation. The majority of studies were set in primary outpatient care and the rest
looked at acute care facilities (Appendix E).
The studies looked at both adults with autism and healthcare providers and as a result, the
demographic data is mixed. For studies with providers not all of them included demographic
information. In the study by Bordini, et al. (2015) 68% were female, the mean age was 46 years,
and the mean age since graduation was 20.7 years. For those studies focused on adults with
autism the ages looked at were 18 and over with a majority being male.

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Primary interventions focused on identification of barriers to primary care for adults with
ASD. Most studies focused on the lack of providers willing and able to care for this population.
There was an additional focus on the need for more training for providers and staff to better care
for adults with ASD. Several studies looked at the general health of adults with ASD and
identified disparities when compared to the non-ASD population such as seizures,
gastrointestinal diseases, diabetes, obesity, depression and anxiety (Croen, Zerbo, Qian, Massolo,
Rich, Sidney, & Kripke, 2015).
Outcomes focused on the need for more training for healthcare professionals. Autistic
adults are more likely to have other medical and psychiatric conditions and to develop
complications which stresses the need for primary care with this population. They are also more
likely to access the Emergency Department (ED) for primary care. The studies addressed this
problem from both the adults with autism and adult primary care providers.
The three qualitative studies used multiple evaluators to review the data to assure that the
data was being coded consistently and themes were identified. Nicolaidis et al. (2016) used three
heterogeneous surveys (Appendix D). Changes in outcomes were significant for identified
barriers to healthcare (p = <0.0001), healthcare self-efficacy (p = 0.016), and patient-provider
communication (p = 0.027). Heterogeneity in the studies was tested by chi-square, Wilcoxson,
Cronbach’s alpha, and Fisher’s exact tests. The effects between studies did vary, but all did
show that there is a need for training in autism for healthcare providers (Appendix F).
Purpose Statement
This topic was selected because adults with ASD are a forgotten population. ASD is
thought of as a pediatric issue however autism is not something that a person “grows” out of.
Once teenagers and young adults with ASD age-out of healthcare as a pediatric patient, options

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are limited for finding an adult health care provider who is comfortable and confident in caring
for them. The goal for this problem is to improve the overall health of adults with autism by
increasing access to adult primary health care providers through provider education.
CHAPTER 2; APPLIED CLINICAL PROJECT: METHODS AND RESULTS
Evidence Based Practice Model and Conceptual/Theoretical Model
The Star Model of Knowledge Transformation addresses the challenges of large amounts
of research, the disconnection between knowledge and practice, and the value of integrating
provider expertise and patient preference into best practice (Melnyk & Fineout-Overholt, 2015).
The Star Model has five points (Appendix G).
Sociocultural learning theory (SCT) is thought to have been initially developed by Lev
Vygotsky. In his theory, Vygotsky believed that learning involves self-instruction, assisted
learning and the zone of proximal development (ZPD) which focuses on what the learner can do
without help and with help (Vygotsky, 1986/1962). SCT emphasizes that in order for learning to
occur, the participants need to be actively involved (Andersson & Andersson, 2005). This theory
was selected because the evidence in the literature shows that providers have a desire to learn
more about this patient population and learners need to be engaged and motivated for learning to
occur.
Project Methods
Protection of Human Subjects
The Institutional Review Board (IRB) at Arizona State University granted approval for
this project (See Appendix H). An approval letter was also obtained from the participating
institution, Mountain Park Health Center (MPHC) (See Appendix I) where the project was to be
implemented. There were five clinics within the MPHC system. Four clinics ultimately
participated. Participants were adult primary care providers at the clinics. All providers were

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invited to participate. Participation in the project was voluntary, and anonymous and presented
no anticipated risk of harm.
Data was collected anonymously. All potential participants were provided with a letter outlining
the project (Appendix J). Completing surveys and attending the education summit was taken as
consent to participate in the project. Each survey was coded with the participant’s first three
letter of their parent’s first name and the last three digits of the participant’s phone number. All
surveys were then able to be matched up while protecting the anonymity of each participant.
Setting, Organizational Culture, and Participants
The project took place in a large metropolitan city in the Southwestern United States. A
multi-site primary care clinic with five adult care campuses was selected as the site. The
organization focuses on providing affordable health care using a multidisciplinary Care Team
model. The education program will target adult primary care providers and may include
physicians, nurse practitioners and physician assistants. According to the website there were 45
providers that met the criteria of being a primary care provider who sees adult clients in the
organization.
Procedure
The lead provider for each clinic was approached to ask for participation from their
clinic. Four agreed to participate while one clinic did not feel that they could be a part of this
project. Arrangements were made to attend a provider meeting to present the education program.
The week before the education session, a pre- education session survey was sent electronically to
each lead provider to distribute to their team. It was estimated that each survey would take about
15 minutes to complete. The education sessions were all part of weekly provider meetings and

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took about 30 minutes. After the education session, each participant was asked to complete an
immediate post-test survey. Arrangements were made to send an electronic 1 month post-test
survey out to each lead one month after the education session. The leads were asked to distribute
at their next team meeting to the providers to fill out. The final surveys were then picked up.

Learning Objectives
1. Discuss the prevalence of autism and diagnostic criteria
2. Identify at least four comorbidities associated with Autism Spectrum Disorder (ASD).
3. Determine at least four changes that can be implemented into your practice that would
improve the experience for clients with ASD.
4. Identify one local and one national resource that can assist you to improve the health of your
ASD patients.
The face to face education session was presented to all participants. The current
prevalence of ASD compared historical diagnosis rates was presented. Commonly used
medications and the current diagnostic criteria according to Diagnostic and Statistical Manual of
Mental Disorders, Fifth Edition (DSM-V) were highlighted. The risks and benefits of adult
diagnosis of ASD were discussed. Associated co-morbidities were presented as well as an
understanding of the experiences of adults with ASD in accessing healthcare. Nicolaidis (2014)
outlined the factors that make up a successful healthcare experience as operating at a systemlevel, patient-level and provider-level. Multiple resources were presented including the Autism
Healthcare Accommodations Toolkit (AHAT). Specific needs that must be addressed include
sensory accommodations, the need for consistency, atypical non-verbal communication, slow

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processing speeds, typical body awareness, and difficulty with planning, organizing and
sequencing. The PowerPoint slides were made available as handouts.
Outcome Measures and Data Collection
A pre-module demographic survey (Appendix L) was developed including questions
about gender, age, race/ethnicity, type of provider, area of practice, years of experience, any
previous autism education, frequency of seeing ASD clients in their practice, and their clinic
location. One additional question was asked on the follow-up survey asked if the provider had
seen an adult with ASD in their practice.
A 26-question pre- and immediate post-test was designed to measure provider
participant’s knowledge, attitudes and behaviors before and after the education session regarding
adults with ASD (Appendix K). The 1-month post-test survey asked for additional questions.
Validity and reliability of an instrument is important in determining the actual performance of
the tool (Billings & Halstead, 2016). Validity assures that the tool is evaluating what it was
designed to measure. Reliability is the “extent to which an instrument is dependable, precise,
predictable, and consistent (Billings & Halstead, p. 392, 2016).
The content of the questions was designed to measure the learning objectives of the
education session. The tool was created by modifying tools that had been used in previous
research and the addition new questions. Knowledge questions were adapted from a tool
developed by Bordini, Lowenthal, Gadelha, de Araujo Filho, de J. Mari, and Paula (2015).
Permission was obtained from the principal author and the tool was translated from Portuguese
to English. Each question was evaluated to assure the all answer choices were plausible and there
was only one correct answer. Attitudes and behaviors statements were modified from Nicolaidis,
et al. (2016). Dr. Nicolaidis reviewed the developed tool as an expert and provided feedback. No

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formal specific test for reliability were performed prior to beginning the project. It should be
noted that participants were asked the same questions on all three surveys. Participants were then
aware of the questions on subsequent surveys which could have potentially impacted scores on
the post-test and follow-up surveys.
The Modified Knowledge/Attitudes/Beliefs (KAB)questionnaire consisted of two
sections. The first section had 19 statements that participants answered based on a seven point
Likert scale ranging from one – Strongly Disagree to seven- Strongly Agree. These statements
measured attitudes and behaviors regarding adults with ASD. The second section contained 7
multiple choice questions with four responses to measure knowledge about ASD. Question
21was discarded because a typographical error was found on some of the surveys which resulted
in no correct answer being available for participants to select.
The Modified Knowledge/Attitudes/Belief instrument used in this project was a blend of
several different tools. The Likert scale attitudes and beliefs statements were developed based on
a tool created by Dr. Christina Nicolaidis and her team. The knowledge questions were adapted
from a translation from Portuguese to English of a survey developed by Dr. Bordini and her
team. Dr. Nicolaidis, as a research expert in autism in adults reviewed the tool and provided
suggestions. There are no reliability and validity results for this tool developed by the author.
Project Budget
This project did not require a formal budget. The main resource was the author’s time in
developing, implementing and evaluating this project. Project participants were all employees of
MPHC. Participation was voluntary and no compensation was provided. Costs incurred by the
author were for duplication of presentation handouts and surveys as well as mileage for driving
to the clinics to present and pick up surveys.

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Project Results
This is a pilot project is based on current evidence in practice. The question asked was
the basis of the evaluation.
1. How did adult primary care provider’s knowledge, attitudes and beliefs about ASD
change over time?
Data Collection
Survey data were collected manually using paper questionnaires. A total of 30 (66.7%)
providers out of 45 participated in some aspect of the project. Twenty-eight participants (66.2%)
completed the pre-survey demographics, the KAB pre-test and the education session and
immediate post-test. Of those 28 participants, 17 (37.8%) completed 1 month post-test survey.
Demographics of the Sample
All adult primary care providers at MPHC were invited to attend. One clinic declined to
participate. Of the seventeen participants who completed the demographics pre-survey, the
education session and all three KAB surveys, slightly more were males than females. The
average age of the participants was 35.7 with a range from 29-50 years of age. Two participants
did not respond to this item. The average number of years in practice was 5.6 years with a range
from less than one year to 40 years in practice.
The majority of providers identified as non-Hispanic White with three other ethnic
groups making up the rest of the sample. Provider types represented were Physicians, Nurse
Practitioners, and Physician Assistants. Clinic sites represented in the sample were Gateway,
Tempe and Maryvale.
Prior to this educational program, participants that had received education about ASD
(n=13, 76.5%) were fewer than those who had never received education (n=4, 23.5%). The

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frequency with which providers see ASD patients ranged from weekly, monthly, every 2-3
months, every 4-6 months, yearly to never. A summary of all demographic information can be
found in Appendix M.
Data Analysis and Findings
SPSS statistics software (version 23, IBM Corp., 2015) was used to manage and store all
data. Descriptive statistics were used to describe the sample and outcome variables. Friedman’s
ANOVA is a nonparametric test was used to analyze the outcome variables. It can determine if
the medians of measures that are being compared are different. Criteria met for using Friedman’s
ANOVA include the same group being measured three times, the group is random, and the
dependent variable is measured at the ordinal level (Kellar & Kelvin, 2013). A p value of <0.05
was used to determine statistical significance.
A non-parametric Friedman test of differences among repeated measures was conducted and
rendered a Chi-square value of 130.483 which was significant (p<0.001).
Results
Change in Knowledge, Attitudes and Beliefs Change Over Time
To evaluate for change in all areas, the scores were compared. Pre-test knowledge scores
ranged from 1 to 5 with a mean of 3.59. Immediate post-test knowledge scores ranged from 4 to
6 with a mean of 4.94. One-month post-test knowledge scores ranged from 1-6 with a mean of
4.12. Pre-test attitudes scores ranged from 36-72 with a mean of 57.49. Immediate post-test
attitudes scores ranged from 65-83 with a mean of 74.31. One-month post-test attitudes scores
ranged from 70-105 with a mean of 87.32.

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Pre-test beliefs scores ranged from 7-38 with a mean of 25.77. Immediate post-test beliefs scores
ranged from 8-36 with a mean of 26.71. One-month post-test beliefs scores ranged from 14-45
with a mean of 33.67 (Appendix N).
A chi-square goodness of fit test was calculated comparing total scores for knowledge,
attitudes and beliefs on the pre-test, post-test and follow-up surveys. The null hypothesis stated
that there would be no significant difference in scores after the education intervention.
Significant deviation from the hypothesized values was found (X²(8)=130.48, p<0.001). The null
hypothesis is rejected. There was statistically significant improvement over time in knowledge,
attitudes and beliefs (Appendix N).
Conclusions/Discussion
The project focused on determining if an education program for adult care providers
about ASD would increase knowledge, attitudes and beliefs. Based on the results of this project,
there was a significant change in knowledge, attitudes and beliefs. The great majority of
providers (76.5%) had never had any education about ASD prior to this session. The evidence
suggests that additional education sessions like the one from this project would be beneficial to
adult care providers. Adult primary care providers will certainly be seeing more adults with ASD
coming to their practices. Attitudes and beliefs may have increased over time due to further
learning about ASD or possibly having the opportunity to practice what was learned with ASD
clients in the clinic.
The risks of comorbidities in adults with ASD as identified in literature are significant
and speaks to the need for better health care. Schools of medicine, nurse practitioner and
physician assistant programs should add similar content to their curriculum in theory and
practice based on the provider reports that they had not had any prior to this education session. It

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would also be beneficial for current adult practice providers to have more in depth education and
practice in seeing adult patients with ASD in either a clinical setting or a simulated clinical
setting.
Strengths of this project were that participation was voluntary and included multiple
types of providers. Limitations were the location of the project to one geographic location and
one health care clinic system. Results may have been different if there had a been a broader
cross-section of providers either in the area or from different parts of the country. The length of
the education session was short. Further changes in practice may be more likely with more indepth education and opportunities to reflect and develop changes to the current practice setting.
Future areas of study would be to replicate the project in a different geographic location.
Including all members of the clinic team such as nursing and reception staff would help to
develop greater awareness throughout the clinic and hopefully create a better patient experience
for adults with ASD. Working with the whole patient care team to design a more welcoming
environment for adults with ASD would also be a good project to deliver.
Summary
Access to healthcare by providers who have an understanding of autism and how to
work with this population will make a significant improvement in health outcomes. More than
half of adults with ASD have additional psychiatric conditions (Croen, Zerbo, Qian, Massolo,
Rich, Sidney, and Kripke, 2015). Primary care providers need to support and encourage mental
health care as part of the overall health of the individual. Many common chronic health problems
are seen with greater frequency in adults with ASD. Those conditions include dyslipidemia,
hypertension, diabetes, obesity and thyroid disease (Croen et al., 2015). The incidence of these
conditions could be decreased if adults with ASD are working with a primary care provider.

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Goals would be to have a decrease in use of the ED for primary healthcare and an increase in
adult primary care providers who indicate that they are comfortable in caring for adults with
ASD. Connecting adults with ASD to a primary care provider rather than seeking primary care
in the ED will help to reduce overall health care costs.
There is a great amount of progress that needs to be made to assure that adults with
autism are afforded the same opportunity to receive adequate healthcare. Primary care providers
who are committed to addressing the needs of this identified group will need to become the
coordinator of care between disciplines to achieve better health care outcomes and a more
welcoming physical environment. Imagine a clinic where adults with ASD are welcomed and
supported and the environment addresses their special sensory needs. Living a healthier life has
the potential to decrease healthcare costs and increase life expectancy. Being healthier will
improve quality of life and peace of mind for themselves and their families.

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Johnson, M. K., & Carter, M. R. (2011). Autism spectrum disorders: A review of the literature
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Philadelphia, PA: Wolters Kluwer Health/Lippincott Williams & Wilkins.
Kuhlthau, K. A., Warfield, M. E., Hurson, J., Delahaye, J., & Crossman, M. K. (2015). Pediatric
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Tyler, C. V., Schramm, S. C., Karafa, M., Tang, A. S., & Jain, A. K. (2011). Chronic disease
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Vygotsky, L., (1986/1962). Thought and language. Cambridge, MA: MIT Press.
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23

PRIMARY PROVIDER EDUCATION AND ASD
Appendix A
CINAHL

24

PRIMARY PROVIDER EDUCATION AND ASD
Appendix B
PsycINFO

25

PRIMARY PROVIDER EDUCATION AND ASD
Appendix C
PubMed

26

PRIMARY PROVIDER EDUCATION AND ASD
Appendix D
Rating System for the Hierarchy of Evidence of Intervention/Treatment Questions
Level 1: Evidence of a systematic review or meta-analysis of all relevant randomized control
trials (RCT’s).
Level 2: Evidence obtained from well-designed Randomized Control Trials (RCT).
Level 3: Evidence obtained from well-designed control trials without randomization.
Level 4: Evidence from well-designed case-control and cohort studies.
Level 5: Evidence from systematic reviews of descriptive and qualitative studies.
Level 6: Evidence from a single descriptive or qualitative study.
Level 7: Evidence from the opinions of authorities and/or reports of expert committees.

Above information from “Evidence-based practice in nursing and healthcare: a guide to best
practice, 3rd edition” by Bernadette M. Melnyk and Ellen Fineout-Overholt. 2015, page 11.

27

PRIMARY PROVIDER EDUCATION AND ASD

28
Appendix E
Evaluation Table

Citation:
author(s) &
date of
publication,
title, funding
agency,
country
Ailey, et al.
(2015), Factors
related to
complications
among adult
patients with
intellectual
disabilities
hospitalized at
an academic
medical center.
Funded by
Center for
Clinical
Research and
Scholarship at
Rush University
Medical Center,
Gamma Phi
Chapter of
Sigma Theta
Tau

Conceptual
framework

Study design

Design:
Exploratory
retrospective
review
Method:
retrospective
chart review

Social
Determinants
of Health

Purpose: To
analyze data
from reviews of
academic
medical center
charts about
complications
and to examine
patient and
hospitalization
characteristics in
relation to
complications
among adult

Sample
description

Major
variables
studied &
defined

Measurement of
each variable

Data analysis
used

Study findings

Worth of the
study to
practice

Level 4
Strengths: Data
was collected
over two years.

N=217
n=70
Setting: Data
collected from
chart reviews
over a two-year
period at an
academic
teaching medical
center in the
Midwest.
Inclusion
Criteria: adults
over 18 years
old, and one of
the following
secondary
diagnosis codes

IV-ID adults
DVHospitalization
Complications

Data extracted
from chart
review of
patients with ID
admitted for
medical or
surgical reasons
for
complications.

IV-22.9%

Chi-square and
binary logical
regression tests

Twice as likely
to have
complications
and 4 times as
likely to have
complications
with surgical
procedures.

Weaknesses:
Sample size,
study site may
not be
representative
of other medical
centers or
geographic
regions, 25% of
admissions with
ID came from
other hospitals,
all patients with
ID may not
have been
identified with a

Key: AHAT-Autism Healthcare Accommodations Toolkit; ASD – Autism Spectrum Disorders; ATN-Autism Treatment Network; CAPSI-psychosocial care
centers for children and adolescents; CBPR – community-based participatory research; DV-dependent variable; ED-emergency department; EMR – electronic
medical record, EV- extraneous variable; ICD-9-International Classification of Diseases, 9th Revision, Clinical Modification; ID-intellectual disabilities; IVindependent variable; MC – Multiple Choice, N-number of studies; n- number of participants, NCRR- National Center for Research Resources; NIH-National
Institutes of Health; NRCT-non-randomized control trial; OCD –obsessive-compulsive disorder, OCTRI - Oregon Clinical and Translational Research
Institute; PCP- primary care provider; PDD-NOS- pervasive developmental disorder not otherwise specified; PTPT-Pre-test Post-test; RN-Registered Nurse;
USA – United States of America

PRIMARY PROVIDER EDUCATION AND ASD
Citation:
author(s) &
date of
publication,
title, funding
agency,
country

Conceptual
framework

No conflicts or
biases
recognized.

Study design

Sample
description

patients with ID
hospitalized for
nonpsychiatric
reasons.

based on ICD-9:
317-mild mental
retardation,
318.x-other
specified mental
retardation, 319unspecified
mental
retardation
Exclusion
Criteria:
psychiatric
admissions

Design: PTPT
Intervention
/Longitudinal
Study

N=29
n=22 primary
care providers 15
of them (68.2%)
were female,
mean age was 46
years old, mean
time since
graduation was
20.7 years; 16
pediatricians and
six general
practitioners

USA

Bordini, et al.
(2015), Impact
of training in
autism for
primary care
providers: A
Pilot study
Funding: none
disclosed
No conflicts or
biases
recognized.

Transtheoretica
l model

Method: Pre-test
given followed
by 3 hours of
weekly training
and an
immediate posttest

29
Major
variables
studied &
defined

Measurement of
each variable

Data analysis
used

Study findings

Worth of the
study to
practice

secondary
diagnosis.
Clinical
Significance:
Demonstrates
the need for
those with ID
including
autism to have a
primary care
provider.
IV1-referrals
to mental
health service
for evaluation
IV2-mean
score
comparison
between pretest and posttest
DV-ASD
training

Survey of how
many suspected
ASD cases were
referred 4
months after
training was
completed.
Pretest and
posttest with 13
MC questions
and vignettes of
clinical ASD
cases.

IV1 – 1 referral
for autism before
training and 6
referrals after the
training.
Wilcoxson test

IV2 – ASD
knowledge
increased from
6.73 to 9.18 with
a p <0.01. Total
number of
correct answers
increased 37.1%

Level 4
Strengths –
training
program can be
replicated,
increased ASD
knowledge
Weaknesses –
pilot study
conducted at a
single location,
small sample

Key: AHAT-Autism Healthcare Accommodations Toolkit; ASD – Autism Spectrum Disorders; ATN-Autism Treatment Network; CAPSI-psychosocial care
centers for children and adolescents; CBPR – community-based participatory research; DV-dependent variable; ED-emergency department; EMR – electronic
medical record, EV- extraneous variable; ICD-9-International Classification of Diseases, 9th Revision, Clinical Modification; ID-intellectual disabilities; IVindependent variable; MC – Multiple Choice, N-number of studies; n- number of participants, NCRR- National Center for Research Resources; NIH-National
Institutes of Health; NRCT-non-randomized control trial; OCD –obsessive-compulsive disorder, OCTRI - Oregon Clinical and Translational Research
Institute; PCP- primary care provider; PDD-NOS- pervasive developmental disorder not otherwise specified; PTPT-Pre-test Post-test; RN-Registered Nurse;
USA – United States of America

PRIMARY PROVIDER EDUCATION AND ASD
Citation:
author(s) &
date of
publication,
title, funding
agency,
country

Conceptual
framework

Brazil

Study design

Sample
description

Purpose:
Evaluate the
impact of a
training program
on ASD
identification.

completed the
study.

30
Major
variables
studied &
defined

Measurement of
each variable

Data analysis
used

Study findings

size limits
generalization,
limited results
on specific
knowledge
acquisition due
to limited
numbers of
items.

Setting: Primary
care providers
from the Sao
Paulo, Brazil
area. Training
was conducted at
a CAPSI in Sao
Paulo.
Inclusion
Criteria:
primary care
providers

Bruder, et al.
(2012), Brief
report: The
medical care of
adults with
autism spectrum
disorders:
Identifying the
needs.

Observational
Inductive
Framework

Design: Crosssectional data
survey
Method:
electronic survey
sent to primary
care physicians
in Connecticut

N-1,580
n=346
30 responses
were discarded
because
respondents did
not meet the
inclusion criteria
Survey was
initially mailed

Worth of the
study to
practice

IV-serving
adults with
ASD

14 MC
questions, 3 with
multiple
response and 4
with open-ended
response.

Descriptive
statistics for the
data and openended responses
were
summarized.

IV – 40% served
adults with ASD.
36% have had
some training in
ASD. Over 50%
would like more
training in caring
for adults with
ASD via

Clinical
Significance –
autism
education
increased
provider
knowledge.
Level 4
Strengths –
376 respondents
with a 23.8%
return rate.
Identified the
need for more
training as there
is only a small

Key: AHAT-Autism Healthcare Accommodations Toolkit; ASD – Autism Spectrum Disorders; ATN-Autism Treatment Network; CAPSI-psychosocial care
centers for children and adolescents; CBPR – community-based participatory research; DV-dependent variable; ED-emergency department; EMR – electronic
medical record, EV- extraneous variable; ICD-9-International Classification of Diseases, 9th Revision, Clinical Modification; ID-intellectual disabilities; IVindependent variable; MC – Multiple Choice, N-number of studies; n- number of participants, NCRR- National Center for Research Resources; NIH-National
Institutes of Health; NRCT-non-randomized control trial; OCD –obsessive-compulsive disorder, OCTRI - Oregon Clinical and Translational Research
Institute; PCP- primary care provider; PDD-NOS- pervasive developmental disorder not otherwise specified; PTPT-Pre-test Post-test; RN-Registered Nurse;
USA – United States of America

PRIMARY PROVIDER EDUCATION AND ASD
Citation:
author(s) &
date of
publication,
title, funding
agency,
country
Funding: none
disclosed
No conflicts or
biases
recognized.
USA

Conceptual
framework

Study design

Sample
description

Purpose: To
obtain data on
adults with ASD
including reasons
for visits, living
arrangements,
employment, and
any services
received.

to 600 randomly
selected
physicians but
due to a poor
response (n=94
for a 15.6%
return), they
survey was then
mailed to all
1,580 physicians.
Inclusion
Criteria: adult
primary care
providers

31
Major
variables
studied &
defined

Measurement of
each variable

Data analysis
used

Study findings

Worth of the
study to
practice

workshops or
conferences.

cohort of
providers that
care for adults
with ASD.
Weaknesses –
Study was done
in only 1 state,
survey
respondents
were voluntary
and those who
chose not to
respond may
have different
views,
respondents
were
anonymous so
additional key
data may have
been missed.
Clinical
Significance –
identified
inadequate

Key: AHAT-Autism Healthcare Accommodations Toolkit; ASD – Autism Spectrum Disorders; ATN-Autism Treatment Network; CAPSI-psychosocial care
centers for children and adolescents; CBPR – community-based participatory research; DV-dependent variable; ED-emergency department; EMR – electronic
medical record, EV- extraneous variable; ICD-9-International Classification of Diseases, 9th Revision, Clinical Modification; ID-intellectual disabilities; IVindependent variable; MC – Multiple Choice, N-number of studies; n- number of participants, NCRR- National Center for Research Resources; NIH-National
Institutes of Health; NRCT-non-randomized control trial; OCD –obsessive-compulsive disorder, OCTRI - Oregon Clinical and Translational Research
Institute; PCP- primary care provider; PDD-NOS- pervasive developmental disorder not otherwise specified; PTPT-Pre-test Post-test; RN-Registered Nurse;
USA – United States of America

PRIMARY PROVIDER EDUCATION AND ASD
Citation:
author(s) &
date of
publication,
title, funding
agency,
country

Croen, et al.,
(2015), The
health status of
adults on the
autism
spectrum.
Funding:
Special Hope
Foundation
No conflicts or
biases
recognized.
USA

Conceptual
framework

Social
determinants of
health

Study design

Design: NRCT
Method: Chart
review of study
group of adults
with autism and
control group of
adults without
autism.
Purpose: to
describe the
frequency of
psychiatric and
medical
conditions
among a
population of
adults with
autism in the
USA.

Sample
description

N=1507 in study
group
N=15,070 in
control group
Control group
was sampled at a
10:1 ratio.
Controls were
frequency
matched to cases
on sex and 5year age group.
Inclusion
Criteria: adult
members of
Kaiser
Permanente
Northern
California
enrolled from
2008-2012 with
an ICD-9

32
Major
variables
studied &
defined

IV-ASD adults
DV1psychiatric
conditions
DV2-medical
conditions

Measurement of
each variable

5-year Chart
review for adults
with autism to
identify medical
and psychiatric
diagnoses.

Data analysis
used

Chi-square test
p<0.01statistica
lly significant
multivariate
logistic
regression
model

Study findings

IV-DV1 –
significant ↑
psychiatric
disorders
(depression,
anxiety, bipolar
disorder, OCD,
schizophrenia, &
suicide
attempts).
IV-DV2 significant ↑ in
medical
conditions
(immune
conditions,
gastrointestinal
& sleep
disorders,
seizure, obesity,
dyslipidemia,

Worth of the
study to
practice

training for
providers and a
desire for more
training.
Level 3
Strengths –
large, ethnically
diverse study
population with
a significant
population of
Medicaid
recipients,
included adults
of all ages,
cases and
controls were
matched. 5-year
span, size of
study groups,
confirmed
findings from a
previous study
from another
state

Key: AHAT-Autism Healthcare Accommodations Toolkit; ASD – Autism Spectrum Disorders; ATN-Autism Treatment Network; CAPSI-psychosocial care
centers for children and adolescents; CBPR – community-based participatory research; DV-dependent variable; ED-emergency department; EMR – electronic
medical record, EV- extraneous variable; ICD-9-International Classification of Diseases, 9th Revision, Clinical Modification; ID-intellectual disabilities; IVindependent variable; MC – Multiple Choice, N-number of studies; n- number of participants, NCRR- National Center for Research Resources; NIH-National
Institutes of Health; NRCT-non-randomized control trial; OCD –obsessive-compulsive disorder, OCTRI - Oregon Clinical and Translational Research
Institute; PCP- primary care provider; PDD-NOS- pervasive developmental disorder not otherwise specified; PTPT-Pre-test Post-test; RN-Registered Nurse;
USA – United States of America

PRIMARY PROVIDER EDUCATION AND ASD
Citation:
author(s) &
date of
publication,
title, funding
agency,
country

Conceptual
framework

Study design

Sample
description

33
Major
variables
studied &
defined

Measurement of
each variable

Data analysis
used

diagnosis of
ASD.

Kuhlthau, et al.
(2015),
Pediatric
provider’s
perspectives on
the transition to

Framework
Approach

Design:
Grounded
Theory
Method: Semistructured

N=17
n=16
13 sites in the
USA and Canada
agreed to
participate. 3 of

IV-strategies
for a
successful
transition for
ASD
population.

Semi-structured
interviews by
phone lasting 1
hour from 16
sites.

Framework
approach using
3 stages: 1.
Data
management –
2 team

Study findings

Worth of the
study to
practice

hypertension &
diabetes).

Weaknesses –
ASD was
determined by
diagnoses in the
EMR and not
by a
standardized
clinical exam.
ASD may have
been underreported in
medical records

1.Interventions
and strategies
identified:
EMR’s, resource
links, care
coordination,

Clinical
Significance –
there is a need
for health
education and
health care for
adults with
autism.
Level 6
Strengths –
diversity of
providers
interviewed,

Key: AHAT-Autism Healthcare Accommodations Toolkit; ASD – Autism Spectrum Disorders; ATN-Autism Treatment Network; CAPSI-psychosocial care
centers for children and adolescents; CBPR – community-based participatory research; DV-dependent variable; ED-emergency department; EMR – electronic
medical record, EV- extraneous variable; ICD-9-International Classification of Diseases, 9th Revision, Clinical Modification; ID-intellectual disabilities; IVindependent variable; MC – Multiple Choice, N-number of studies; n- number of participants, NCRR- National Center for Research Resources; NIH-National
Institutes of Health; NRCT-non-randomized control trial; OCD –obsessive-compulsive disorder, OCTRI - Oregon Clinical and Translational Research
Institute; PCP- primary care provider; PDD-NOS- pervasive developmental disorder not otherwise specified; PTPT-Pre-test Post-test; RN-Registered Nurse;
USA – United States of America

PRIMARY PROVIDER EDUCATION AND ASD
Citation:
author(s) &
date of
publication,
title, funding
agency,
country
adult health care
for youth with
autism spectrum
disorder:
Current
strategies and
promising new
directions.
Funded by the
U.S.
Department of
Health and
Human services,
Health
Resources and
Services
Administration,
Maternal and
Child Health
Research
Program
No conflicts or
biases identified
USA

Conceptual
framework

Study design

Sample
description

interviews using
an interview
guide

the sites had an
additional site
where transition
planning
occurred for a
total of 16 sites.
19 respondents
representing all
16 sites were
interviewed. (5
physicians, 5
psychologists, 7
social workers or
care
coordinators, and
2 RN’s

Purpose: 1.
What are the
current strategies
or interventions
taking place in
ASD-specific
pediatric settings
to assist in a
successful
transition from
pediatric to adult
care for teens
with ASD?
2. What
strategies or
interventions are
needed or would
be helpful in
facilitating
pediatric to adult
healthcare
transition for
teens with ASD?

Setting: semistructured
interviews over
the phone taking
about one hour.
Inclusion
Criteria:
All sites were
ATN treatment

34
Major
variables
studied &
defined

Measurement of
each variable

Data analysis
used

Study findings

Worth of the
study to
practice

members who
conducted
interviews read
the transcripts.
2. Descriptive
accounts -2
different
members of
research team
review
transcripts and
refine initial
categories. 3.
Explanatory
accounts –
analyze data to
identify
associations and
patterns in
categories and
across
categories.

transitionspecific
appointments,
specific written
materials,
education for
families, training
for adult
providers, and
creating
transition
centers.

findings may be
applicable to
other types of
disability.

2.Results of
framework
analysis:
strategies
currently in
place-medical
records to pass
along, written
materials,
transition
appointments,
education for
families

Weaknesses –
all providers
were recruited
through the
ATN, other
specialties such
as family
medicine or
internists may
have a different
perspective,
some sites have
more than 1
provider
interviewed, no
data was
gathered about
the consistency
of interventions.
Clinical
Significance –

Key: AHAT-Autism Healthcare Accommodations Toolkit; ASD – Autism Spectrum Disorders; ATN-Autism Treatment Network; CAPSI-psychosocial care
centers for children and adolescents; CBPR – community-based participatory research; DV-dependent variable; ED-emergency department; EMR – electronic
medical record, EV- extraneous variable; ICD-9-International Classification of Diseases, 9th Revision, Clinical Modification; ID-intellectual disabilities; IVindependent variable; MC – Multiple Choice, N-number of studies; n- number of participants, NCRR- National Center for Research Resources; NIH-National
Institutes of Health; NRCT-non-randomized control trial; OCD –obsessive-compulsive disorder, OCTRI - Oregon Clinical and Translational Research
Institute; PCP- primary care provider; PDD-NOS- pervasive developmental disorder not otherwise specified; PTPT-Pre-test Post-test; RN-Registered Nurse;
USA – United States of America

PRIMARY PROVIDER EDUCATION AND ASD
Citation:
author(s) &
date of
publication,
title, funding
agency,
country

Conceptual
framework

Study design

Sample
description

35
Major
variables
studied &
defined

Measurement of
each variable

Data analysis
used

centers.
Participants must
be the most
knowledgeable
person(s) at the
site about the
transition
process for those
with ASD.

Liu, et al.
(2017), A
profile on

Social
Cognitive
Theory

Design:
Exploratory

N=56,266,305

IV-ASD
DV-ED visits

Review through
the MarketScan
Commercial

Chi-squared test
Fisher’s exact
test

Study findings

Worth of the
study to
practice

Needed
strategies with a
pediatric focuswritten materials,
family and
individual
training, create
resource links.
Needed
strategies
outside of
pediatrics-adult
provider training,
training for
medical students
& residents,
Needed
strategies
internal &
external to
pediatrics- Care
coordination &
transition centers

identifies
practices that
may be helpful
assisting the
transition
process.

Adolescents used
the ED 4 times

Level 4

Key: AHAT-Autism Healthcare Accommodations Toolkit; ASD – Autism Spectrum Disorders; ATN-Autism Treatment Network; CAPSI-psychosocial care
centers for children and adolescents; CBPR – community-based participatory research; DV-dependent variable; ED-emergency department; EMR – electronic
medical record, EV- extraneous variable; ICD-9-International Classification of Diseases, 9th Revision, Clinical Modification; ID-intellectual disabilities; IVindependent variable; MC – Multiple Choice, N-number of studies; n- number of participants, NCRR- National Center for Research Resources; NIH-National
Institutes of Health; NRCT-non-randomized control trial; OCD –obsessive-compulsive disorder, OCTRI - Oregon Clinical and Translational Research
Institute; PCP- primary care provider; PDD-NOS- pervasive developmental disorder not otherwise specified; PTPT-Pre-test Post-test; RN-Registered Nurse;
USA – United States of America

PRIMARY PROVIDER EDUCATION AND ASD
Citation:
author(s) &
date of
publication,
title, funding
agency,
country
emergency
department
utilization in
adolescents and
young adults
with autism
spectrum
disorders.

Conceptual
framework

Study design

Sample
description

Retrospective
Study

Setting: Claim
audit

Method: used
the MarketScan
Commercial
Claims and
Encounters as
the database for
the review.

Inclusion
Criteria: 12-21
years old. Each
annual cohort is
divided into
ASD and nonASD groups.
Individuals
covered by
private insurance
plans.

Purpose: To
examine the rates
of ED utilization
over 9 years in
adolescents and
young adults
with ASD.

36
Major
variables
studied &
defined

Measurement of
each variable

Data analysis
used

Study findings

Worth of the
study to
practice

Claims &
Encounters
database to
identify patients
with ASD who
visited the ED by
linking in-patient
and out-patient
claims from
2005-2013 to
explore the
proportion of
patients with
ASD vs. NonASD that visited
the ED.

t test/Wilcoxon
rank sum test
Multivariable
analysis by
logistic
regression
model.

as often as those
without ASD.
Older
adolescents &
those in rural
areas had a
significant ↑ in
ED visits.
↑ED use for
females and
behavioral ED
services.

Strengths:
Findings from
study confirm
previous similar
studies.
Findings show
an ↑ trend in
ED use.in ASD
vs non-ASD
population.
Confirmed the
use of the ED
for behavioral
health issues is
↑.
Limitations:
Claims were
from private
insurers and no
data from
Medicare,
Medicaid and
the uninsured.
There were
fluctuations in
health plan

Key: AHAT-Autism Healthcare Accommodations Toolkit; ASD – Autism Spectrum Disorders; ATN-Autism Treatment Network; CAPSI-psychosocial care
centers for children and adolescents; CBPR – community-based participatory research; DV-dependent variable; ED-emergency department; EMR – electronic
medical record, EV- extraneous variable; ICD-9-International Classification of Diseases, 9th Revision, Clinical Modification; ID-intellectual disabilities; IVindependent variable; MC – Multiple Choice, N-number of studies; n- number of participants, NCRR- National Center for Research Resources; NIH-National
Institutes of Health; NRCT-non-randomized control trial; OCD –obsessive-compulsive disorder, OCTRI - Oregon Clinical and Translational Research
Institute; PCP- primary care provider; PDD-NOS- pervasive developmental disorder not otherwise specified; PTPT-Pre-test Post-test; RN-Registered Nurse;
USA – United States of America

PRIMARY PROVIDER EDUCATION AND ASD
Citation:
author(s) &
date of
publication,
title, funding
agency,
country

Conceptual
framework

Study design

Sample
description

37
Major
variables
studied &
defined

Measurement of
each variable

Data analysis
used

Study findings

Worth of the
study to
practice

enrollment that
may have
affected sample
sizes.
ASD cases and
ED visits were
ascertained
without any
clinical event
records.

Nicolaidis, et al.
(2015),
“Respect the
way that I need
to communicate

Postpositivist

Design:
Phenomenonolog
y

N= 39 autistic
adults and 16
support persons

IV-healthcare
experiences

Used a cocreated interview
guide with a
focus on making
questions

Thematic
analysis with an
inductive
approach using
Text Analysis

Common themes
identified:
Autism-related
factors affecting
healthcare:

Clinical
Significance:
Adolescents and
young adults
with ASD have
a greater
reliance on the
ED for primary
care medical
and mental
health care.
Level 6
Strengths:
demonstrates
how at CBPR

Key: AHAT-Autism Healthcare Accommodations Toolkit; ASD – Autism Spectrum Disorders; ATN-Autism Treatment Network; CAPSI-psychosocial care
centers for children and adolescents; CBPR – community-based participatory research; DV-dependent variable; ED-emergency department; EMR – electronic
medical record, EV- extraneous variable; ICD-9-International Classification of Diseases, 9th Revision, Clinical Modification; ID-intellectual disabilities; IVindependent variable; MC – Multiple Choice, N-number of studies; n- number of participants, NCRR- National Center for Research Resources; NIH-National
Institutes of Health; NRCT-non-randomized control trial; OCD –obsessive-compulsive disorder, OCTRI - Oregon Clinical and Translational Research
Institute; PCP- primary care provider; PDD-NOS- pervasive developmental disorder not otherwise specified; PTPT-Pre-test Post-test; RN-Registered Nurse;
USA – United States of America

PRIMARY PROVIDER EDUCATION AND ASD
Citation:
author(s) &
date of
publication,
title, funding
agency,
country
with you”:
Healthcare
experiences of
adults on the
autism
spectrum.
Funded by the
National
Institute of
Mental Health,
OCTRI, NCRR,
a component of
the NIH, and
NIH Roadmap
for Medical
Research
No conflicts or
biases
recognized.
USA

Conceptual
framework

Study design

Sample
description

Method:
Interviews of
various kinds to
accommodate
communication
needs (telephone,
instant
messenger,
email, or in
person)

Setting: in
person, by
phone, or via
electronic
communication.

Purpose: To
gain a deep
understanding of
autistic adults’
healthcare
experiences and
suggestions for
improving care.

Inclusion
Criteria: at least
18 years old,
communicate in
written or spoken
English, or
American Sign
Language, a
formal diagnosis
of autism,
Asperger’s,
PDD-NOS, or
ASD. Four spots
were reserved for
persons without
a formal
diagnosis &
scored 32 or
higher on the
Autism Quotient.

38
Major
variables
studied &
defined

Measurement of
each variable

Data analysis
used

Study findings

Worth of the
study to
practice

concrete and
specific without
compromising
the open-ended
nature of the
interview.

Markup System
Software.
Used an
iterative process
to create a
preliminary
coding scheme,
code transcripts
& revise codes.
They identified
common
themes with
clinical or
policy
implications
about
healthcare for
adults with
ASD.

verbal
communication
skills, sensory
sensitivities,
challenges with
body awareness,
slow processing
speed, atypical
nonverbal
communication,
& challenges
with
organization.
Provider-level
factors:
knowledge about
ASD in adults,
incorrect
assumptions
about specific
patients,
willingness to
allow written
communication,
use of accessible
language,
openness to

approach can
enable ASD
individuals to
participate in a
research project
Limitations:
Not a random
sample of the
ASD adult
population.
Sample was
largely nonLatino white &
may not be
transferrable to
other racial and
ethnic
minorities.
Study is limited
to the US and
findings may
not transfer to
other countries.
Clinical
Significance:

Key: AHAT-Autism Healthcare Accommodations Toolkit; ASD – Autism Spectrum Disorders; ATN-Autism Treatment Network; CAPSI-psychosocial care
centers for children and adolescents; CBPR – community-based participatory research; DV-dependent variable; ED-emergency department; EMR – electronic
medical record, EV- extraneous variable; ICD-9-International Classification of Diseases, 9th Revision, Clinical Modification; ID-intellectual disabilities; IVindependent variable; MC – Multiple Choice, N-number of studies; n- number of participants, NCRR- National Center for Research Resources; NIH-National
Institutes of Health; NRCT-non-randomized control trial; OCD –obsessive-compulsive disorder, OCTRI - Oregon Clinical and Translational Research
Institute; PCP- primary care provider; PDD-NOS- pervasive developmental disorder not otherwise specified; PTPT-Pre-test Post-test; RN-Registered Nurse;
USA – United States of America

PRIMARY PROVIDER EDUCATION AND ASD
Citation:
author(s) &
date of
publication,
title, funding
agency,
country

Conceptual
framework

Study design

Sample
description

39
Major
variables
studied &
defined

Measurement of
each variable

Data analysis
used

The secondary
sample had
people with
experience in
supporting
autistic adults in
healthcare
settings.

Nicolaidis, et al.
(2016), The
development
and evaluation
on an online
healthcare
toolkit for
autistic adults
and their

Transtheoretica
l Model

Design: Crosssectional data
survey

N=259 autistic
adults
N=51 PCP’s

Method: Toolkit
development –
cognitive
interviewing and
test-retest

Inclusion
Criteria:
participants for
all 3 studies were
>18 years old,

IV-AHAT
DV1-content
validity and
stability
DV2-barriers
to healthcare

DV1-Evaluation
of toolkit using a
mixed-methods,
single arm PTPT
DV2-pre and
post checklist
previously
developed

Cronbach’s
alphas for DV3
& DV4
Paired t tests for
pre- and postintervention
outcomes.
Thematic
analysis for

Study findings

Worth of the
study to
practice

providing other
accommodation,
& a skill in
appropriately
incorporating
supporters.
System-level
factors:
availability of
supporters,
complexity of
the healthcare
system,
accessibility of
healthcare
facilities, &
stigma about
ASD.
Over 90% would
recommend the
toolkit to a friend
or healthcare
provider.
Mean barriers to
healthcare
decreased.

Stresses the
importance of
individual
strategies and
accommodation
Healthcare
systems need to
find ways to
make care more
accessible for
adults with
ASD.

Level 4
Strengths: 1st
intervention
specifically
developed to
improve
primary care

Key: AHAT-Autism Healthcare Accommodations Toolkit; ASD – Autism Spectrum Disorders; ATN-Autism Treatment Network; CAPSI-psychosocial care
centers for children and adolescents; CBPR – community-based participatory research; DV-dependent variable; ED-emergency department; EMR – electronic
medical record, EV- extraneous variable; ICD-9-International Classification of Diseases, 9th Revision, Clinical Modification; ID-intellectual disabilities; IVindependent variable; MC – Multiple Choice, N-number of studies; n- number of participants, NCRR- National Center for Research Resources; NIH-National
Institutes of Health; NRCT-non-randomized control trial; OCD –obsessive-compulsive disorder, OCTRI - Oregon Clinical and Translational Research
Institute; PCP- primary care provider; PDD-NOS- pervasive developmental disorder not otherwise specified; PTPT-Pre-test Post-test; RN-Registered Nurse;
USA – United States of America

PRIMARY PROVIDER EDUCATION AND ASD
Citation:
author(s) &
date of
publication,
title, funding
agency,
country
primary
providers.
Funding:
National
Institute of
Mental Health
No conflicts or
biases
identified.
USA

Conceptual
framework

40

Study design

Sample
description

Major
variables
studied &
defined

Measurement of
each variable

Data analysis
used

Study findings

Worth of the
study to
practice

reliability
studies.
Evaluation –
mixed methods,
single-arm PTPT
intervention
comparison.

live in the USA
and speak
English. For
autistic adults on
the autism
spectrum
(autistic disorder,
Asperger’s,
PDD-NOS, or
ASD). In the
toolkit
evaluation study,
a designated
PCP.

DV3healthcare
self-efficacy

DV3-using a 21
item scale using
a 4 point Likert
scale created de
novo.

response to
open-ended
survey items
using an
inductive
approach on a
semantic level
and a
constructivist
paradigm

Healthcare selfefficacy
increased.
Satisfaction with
PCP
communication
improved.

services for
autistic adults.
Toolkit has
good content
validity and
test-retest
reliability, is
easily
accessible.
Limitations:
Evaluation
study not
designed to
rigorously test
the
effectiveness of
the toolkit in
changing health
or healthcare
outcomes.
Recruitment
was nonsystematic and
may have
biased the
sample to those
who were more

Purpose: To use
a CBPR
approach to
develop and
evaluate tools to
facilitate the
primary
healthcare of
autistic adults.

DV4-PCP
communicatio
n

DV4-eight item
five point Likert
scale adapted
from the 2007
Health
Information
National Trends
Survey.

Key: AHAT-Autism Healthcare Accommodations Toolkit; ASD – Autism Spectrum Disorders; ATN-Autism Treatment Network; CAPSI-psychosocial care
centers for children and adolescents; CBPR – community-based participatory research; DV-dependent variable; ED-emergency department; EMR – electronic
medical record, EV- extraneous variable; ICD-9-International Classification of Diseases, 9th Revision, Clinical Modification; ID-intellectual disabilities; IVindependent variable; MC – Multiple Choice, N-number of studies; n- number of participants, NCRR- National Center for Research Resources; NIH-National
Institutes of Health; NRCT-non-randomized control trial; OCD –obsessive-compulsive disorder, OCTRI - Oregon Clinical and Translational Research
Institute; PCP- primary care provider; PDD-NOS- pervasive developmental disorder not otherwise specified; PTPT-Pre-test Post-test; RN-Registered Nurse;
USA – United States of America

PRIMARY PROVIDER EDUCATION AND ASD
Citation:
author(s) &
date of
publication,
title, funding
agency,
country

Conceptual
framework

Study design

Sample
description

41
Major
variables
studied &
defined

Measurement of
each variable

Data analysis
used

Study findings

Worth of the
study to
practice

open to this
type of
intervention.
ASD diagnosis
was not
confirmed
independently.
Response rate
was moderate
and those who
did not find the
toolkit useful
may not have
responded.
Clinical
Significance:
Patients and
clinicians may
benefit from the
healthcare
toolkit.
Providers
should do their
best to provide
accommodation
& support the
Key: AHAT-Autism Healthcare Accommodations Toolkit; ASD – Autism Spectrum Disorders; ATN-Autism Treatment Network; CAPSI-psychosocial care
centers for children and adolescents; CBPR – community-based participatory research; DV-dependent variable; ED-emergency department; EMR – electronic
medical record, EV- extraneous variable; ICD-9-International Classification of Diseases, 9th Revision, Clinical Modification; ID-intellectual disabilities; IVindependent variable; MC – Multiple Choice, N-number of studies; n- number of participants, NCRR- National Center for Research Resources; NIH-National
Institutes of Health; NRCT-non-randomized control trial; OCD –obsessive-compulsive disorder, OCTRI - Oregon Clinical and Translational Research
Institute; PCP- primary care provider; PDD-NOS- pervasive developmental disorder not otherwise specified; PTPT-Pre-test Post-test; RN-Registered Nurse;
USA – United States of America

PRIMARY PROVIDER EDUCATION AND ASD
Citation:
author(s) &
date of
publication,
title, funding
agency,
country

Rogers, et al.
(2015),
Systematic
review of
medical home
models to
promote
transitions to
primary adult
health care for
adolescents
living with

Conceptual
framework

Melnyk and
FineoutOverholt
framework

Study design

Design:
Systematic
Review
Method:
Literature review
search from
1/2013 to
5/2103. Searches
were completed
in 6 databases:
CINAHL,

Sample
description

42
Major
variables
studied &
defined

N=9
N=4

IV-autistic
adults

Inclusion
Criteria:
research articles
within the past
10 years with
reported
outcomes of the
implementation
of a medical

DV-Medical
home models

Measurement of
each variable

Survey with
Likert scale,
Survey, Timing,
Health transition
planning
algorithm.

Data analysis
used

Logistical
regression-odds
ratio,
prevalence rates
& percentages
to core
outcomes,
qualitative
analysis

Study findings

Nine articles
reviewed, 4 met
criteria. None
addressed
medical home
models to
transition
adolescents
living with
ASD’s into
primary

Worth of the
study to
practice

ASD client’s
self-advocacy,
self-efficacy, &
selfmanagement
attempts.
Healthcare
systems should
try &
incorporate
tools like this in
protocols,
training, &
medical
records.
Level 5
Strengths:
highlights the
need for more
education for
adult providers
Limitations:
publication bias
– no gray
literature,

Key: AHAT-Autism Healthcare Accommodations Toolkit; ASD – Autism Spectrum Disorders; ATN-Autism Treatment Network; CAPSI-psychosocial care
centers for children and adolescents; CBPR – community-based participatory research; DV-dependent variable; ED-emergency department; EMR – electronic
medical record, EV- extraneous variable; ICD-9-International Classification of Diseases, 9th Revision, Clinical Modification; ID-intellectual disabilities; IVindependent variable; MC – Multiple Choice, N-number of studies; n- number of participants, NCRR- National Center for Research Resources; NIH-National
Institutes of Health; NRCT-non-randomized control trial; OCD –obsessive-compulsive disorder, OCTRI - Oregon Clinical and Translational Research
Institute; PCP- primary care provider; PDD-NOS- pervasive developmental disorder not otherwise specified; PTPT-Pre-test Post-test; RN-Registered Nurse;
USA – United States of America

PRIMARY PROVIDER EDUCATION AND ASD
Citation:
author(s) &
date of
publication,
title, funding
agency,
country
autism spectrum
disorder.
No funding.
No conflicts or
biases
identified.

Conceptual
framework

Study design

Sample
description

Medline, ERIC,
PsycINFO, Pub
Med, and
Psychology &
Behavioral
Sciences. Key
words were:
Autism,
adolescent,
young adult,
transition,
medical home,
healthcare
model, and
intervention.

home transition
model for
adolescents and
young adults
with ASD from
international
English language
publications.
Exclusion
Criteria:
educational,
behavioral, and
medical
transition models
from other
chronic
conditions such
as sickle cell,
asthma, cystic
fibrosis, and
non-English
language
publications.

43
Major
variables
studied &
defined

Measurement of
each variable

Data analysis
used

Study findings

Worth of the
study to
practice

healthcare
services.

conference
proceedings or
e-mail lists that
might contain
information;
limited to
English
language
journals
Clinical
Significance:
nursing needs to
work with other
disciplines to
educate adult
healthcare
providers on the
needs of
adolescents
living with
ASD &
evaluate
medical home
transition
models for this
population.

Key: AHAT-Autism Healthcare Accommodations Toolkit; ASD – Autism Spectrum Disorders; ATN-Autism Treatment Network; CAPSI-psychosocial care
centers for children and adolescents; CBPR – community-based participatory research; DV-dependent variable; ED-emergency department; EMR – electronic
medical record, EV- extraneous variable; ICD-9-International Classification of Diseases, 9th Revision, Clinical Modification; ID-intellectual disabilities; IVindependent variable; MC – Multiple Choice, N-number of studies; n- number of participants, NCRR- National Center for Research Resources; NIH-National
Institutes of Health; NRCT-non-randomized control trial; OCD –obsessive-compulsive disorder, OCTRI - Oregon Clinical and Translational Research
Institute; PCP- primary care provider; PDD-NOS- pervasive developmental disorder not otherwise specified; PTPT-Pre-test Post-test; RN-Registered Nurse;
USA – United States of America

PRIMARY PROVIDER EDUCATION AND ASD
Citation:
author(s) &
date of
publication,
title, funding
agency,
country
Warfield, et al.
(2015),
Physician
perspectives on
providing
primary medical
care to adults
with autism
spectrum
disorders
(ASD).
Funded by U.S.
Department of
Health and
Human
Services, Health
Resources &
Services
Administration,
Maternal &
Child Health
Research
Program

44

Conceptual
framework

Study design

Sample
description

Major
variables
studied &
defined

Measurement of
each variable

Data analysis
used

Study findings

Worth of the
study to
practice

Framework
approach

Design:
Grounded
Theory
Method:
Structured
Interview Guide

N=23
n=8 (sample 1)
n=2 (sample 2 –
one interview
was not used as
the provider
mainly worked
with infants and
children)

IV – Provider
experiences
caring for
adults with
ASD.

Qualitative data
gathered using a
structured
interview guide.

Framework
approach with 3
inter-connected
stages: data
management,
descriptive
accounts, &
explanatory
accounts.

Level 6

Setting: Data
was collected
using phone
interviews with
adult primary
care providers in
the US and
Canada.

EV –
Suggestions to
increase
provider care
of adults with
ASD

Provider
experience &
background with
ASD – limited
knowledge,
training during
and postresidency
Practice
environment &
provision of
care-treating
adults with ASD
have different
treatment needs
& can be
challenging
during visits.
Care
coordination &
interactions with
other medical
providers-fewer
health services
for adults than
children with
ASD,

Purpose: To
understand
provider
experiences in
providing care to
adults with ASD,
the training they
have received
and suggestions
to encourage
more providers
to provide this
care.

Inclusion
Criteria:
identified as a
family
practitioner or
internist, cared
for patients with
ASD and/or

DV – Autism
training
received

Strengths –
diversity of
providers
interviewed,
findings may be
applicable to
other types of
disability.
Weaknesses –
all adult
healthcare
providers were
recruited
through the
ATN
pediatricians
who had
participated in a
previous study.
Clinical
Significance –
identifies

Key: AHAT-Autism Healthcare Accommodations Toolkit; ASD – Autism Spectrum Disorders; ATN-Autism Treatment Network; CAPSI-psychosocial care
centers for children and adolescents; CBPR – community-based participatory research; DV-dependent variable; ED-emergency department; EMR – electronic
medical record, EV- extraneous variable; ICD-9-International Classification of Diseases, 9th Revision, Clinical Modification; ID-intellectual disabilities; IVindependent variable; MC – Multiple Choice, N-number of studies; n- number of participants, NCRR- National Center for Research Resources; NIH-National
Institutes of Health; NRCT-non-randomized control trial; OCD –obsessive-compulsive disorder, OCTRI - Oregon Clinical and Translational Research
Institute; PCP- primary care provider; PDD-NOS- pervasive developmental disorder not otherwise specified; PTPT-Pre-test Post-test; RN-Registered Nurse;
USA – United States of America

PRIMARY PROVIDER EDUCATION AND ASD
Citation:
author(s) &
date of
publication,
title, funding
agency,
country
No conflicts or
biases
recognized.
USA

Conceptual
framework

Study design

Sample
description

Asperger’s
Syndrome

45
Major
variables
studied &
defined

Measurement of
each variable

Data analysis
used

Study findings

Worth of the
study to
practice

standardizing
care is difficult,
there are
reimbursement
challenges due to
the extra time
needed for visits,
care coordination
is needed, lack of
knowledge of
available
resources in the
community,
complex care
needs for these
clients.
Recommendatio
ns to ↑ the
number of adult
providers willing
to care for adults
with ASDincrease
awareness of the
needs for adults
with ASD and
set expectations

practices that
may be helpful
assisting the
transition
process and
training for
adult care
providers.

Key: AHAT-Autism Healthcare Accommodations Toolkit; ASD – Autism Spectrum Disorders; ATN-Autism Treatment Network; CAPSI-psychosocial care
centers for children and adolescents; CBPR – community-based participatory research; DV-dependent variable; ED-emergency department; EMR – electronic
medical record, EV- extraneous variable; ICD-9-International Classification of Diseases, 9th Revision, Clinical Modification; ID-intellectual disabilities; IVindependent variable; MC – Multiple Choice, N-number of studies; n- number of participants, NCRR- National Center for Research Resources; NIH-National
Institutes of Health; NRCT-non-randomized control trial; OCD –obsessive-compulsive disorder, OCTRI - Oregon Clinical and Translational Research
Institute; PCP- primary care provider; PDD-NOS- pervasive developmental disorder not otherwise specified; PTPT-Pre-test Post-test; RN-Registered Nurse;
USA – United States of America

PRIMARY PROVIDER EDUCATION AND ASD
Citation:
author(s) &
date of
publication,
title, funding
agency,
country

Conceptual
framework

Study design

Sample
description

46
Major
variables
studied &
defined

Measurement of
each variable

Data analysis
used

Study findings

Worth of the
study to
practice

of caring for this
population,
provide training
early & often,
train other staff
as well.

Key: AHAT-Autism Healthcare Accommodations Toolkit; ASD – Autism Spectrum Disorders; ATN-Autism Treatment Network; CAPSI-psychosocial care
centers for children and adolescents; CBPR – community-based participatory research; DV-dependent variable; ED-emergency department; EMR – electronic
medical record, EV- extraneous variable; ICD-9-International Classification of Diseases, 9th Revision, Clinical Modification; ID-intellectual disabilities; IVindependent variable; MC – Multiple Choice, N-number of studies; n- number of participants, NCRR- National Center for Research Resources; NIH-National
Institutes of Health; NRCT-non-randomized control trial; OCD –obsessive-compulsive disorder, OCTRI - Oregon Clinical and Translational Research
Institute; PCP- primary care provider; PDD-NOS- pervasive developmental disorder not otherwise specified; PTPT-Pre-test Post-test; RN-Registered Nurse;
USA – United States of America

PRIMARY PROVIDER EDUCATION AND ASD

47

Appendix F
Synthesis Table
Author
Year

Ailey
2015

Design

CrossExploratory
PTPT
sectional
retrospective Intervention/Long. Data
review
Study
Survey
NRCT

Levels of Evidence
Number of Subjects
Independent Variables
ID Adults
MH Referrals
PTPT comparison
ASD Adults
Transition strategies
Healthcare experiences
AHAT
Provider comfort with ASD
Dependent Variables
Hospitalization
Complications
ASD Training
Psychiatric Conditions
Medical Conditions
ED Visits
Toolkit validity

Bordini
2015

4
70

Bruder
2012

4
22

Croen
2015

4
346

3
1507

X

X

Kuhlthau
2015

Liu
2017

Qual.

Exploratory
retrospective
review
Qual.

6
16

Nicolaidis
2015

4
56,266,305

6
55

Nicolaidis
2016

Rogers Warfield
2015
2015

Crosssectional
Data
Survey

SR

4
310

Qual.

5
13

6
10

X
X
X
X

X

X
X
X
X

X
X

X
X
X
X
X

Key: AHAT-Autism Healthcare Accommodations Toolkit; ASD – Autism Spectrum Disorders; ED-emergency department; ; ID-intellectual disabilities; Long.longitudinal; MH- Mental Health; NRCT-non-randomized control trial; PCP- primary care provider; Qual.- qualitative; SR- Systematic Review

X

PRIMARY PROVIDER EDUCATION AND ASD
Barriers to healthcare
Self-efficacy
PCP communication
Findings
↑complications
↑ referrals
ASD training needed
↑ medical conditions
↑ psychiatric conditions
↑ ED use
Setting
Primary Care
Acute Care

48
X

X
X
X

X

X

X

X

X

X

X

X

X
X
X

X
X
X

X
X

X

X
X

X

Key: AHAT-Autism Healthcare Accommodations Toolkit; ASD – Autism Spectrum Disorders; ED-emergency department; ; ID-intellectual disabilities; Long.longitudinal; MH- Mental Health; NRCT-non-randomized control trial; PCP- primary care provider; Qual.- qualitative; SR- Systematic Review

PRIMARY PROVIDER EDUCATION AND ASD

Appendix G

From: Evidence-based practice in nursing & healthcare: A guide to best practice (Third ed.).

49

PRIMARY PROVIDER EDUCATION AND ASD
Appendix H
IRB Approval Letter from Arizona State University

50

PRIMARY PROVIDER EDUCATION AND ASD

51

PRIMARY PROVIDER EDUCATION AND ASD
Appendix I
Mountain Park Health Center Approval Letter

52

PRIMARY PROVIDER EDUCATION AND ASD

53

Appendix J

Autism Education for Adult Primary Care Providers

Date: October 11, 2017
Dear Participant,

I am a graduate student under the direction of Dr. Kara Mangold in the College of Nursing and Health
Innovation at Arizona State University.
I am inviting you to participate in an evidence based educational program to see if autism education for
adult primary care providers will improve knowledge and comfort in caring for adults with autism. I will
be providing an education session to adult primary care providers regarding an overview of autism,
medical co-morbidities, healthcare experiences, and strategies to improve care and outcomes. This will
involve participating in an educational class and completing a survey before, after and 4-6 weeks after the
class. The total time required to complete the survey before education will be approximately 15 minutes,
the education time will be 30 minutes and the post-education surveys will be 15 minutes each. Pre and
post survey will be done at separate times before provider education and after intervention of education to
patients by the health care team. There will be additional time allowed to answer any questions you may
have.
Your participation in the evaluation of the program is voluntary. You can skip questions in the survey if
you wish. If you choose not to participate or to withdraw from the program at any time, there will be no
penalty. You must be 18 years of age or older to participate in this program. Responses to the
questionnaires will be used to evaluate the effectiveness of an autism education program for adult primary
care providers.
Your responses on the questionnaires will be anonymous and will be identified only by a number that will
not be connected to your name or other personal identifying information. The results of this study may be
used in reports, presentations, or publications, but your name will not be known or used.

This study has been reviewed and approved by the Arizona State University Institutional Review Board.
If you have questions about your rights as a subject/participant in this research, or if you feel you have
been placed at risk, you can contact the Institutional Review Board, through the ASU Office of Research
Integrity and Assurance, at (480) 965-6788.

If you have any questions concerning this program, please contact the following team members:
Kara Mangold, DNP, RN-BC, CCTN, CNE
Kara.Mangold@asu.edu
507-358-2861

PRIMARY PROVIDER EDUCATION AND ASD
Geri Chesebrough, MSN, RN, CNE
gchesebr@asu.edu
913-972-4894
Your attendance at the session/ participation in intervention/ and finishing the pre education and post
education survey will be considered your consent to participate.

Sincerely,
Geri Chesebrough, MSN, RN, CNE

54

PRIMARY PROVIDER EDUCATION AND ASD

55
Appendix K

Modified Knowledge/Attitudes/Beliefs Questionnaire
This is a survey designed to evaluate various aspects of autism care for adults. Please answer truthfully (i.e. Do not
tell us what you THINK we want to hear, rather tell us what YOU really believe) and complete all the questions.
All responses will be treated in strict confidence and seen only by independent research assistants. All individual
identities will be masked and the analysis of the data will be blinded. Only the aggregate results will be published.

Thank you for your participation.

For the purposes of the rest of this questionnaire, we define Autism Spectrum Disorder (ASD) using Autism Speaks
definition as follows:

Autism, or autism spectrum disorder, refers to a range of conditions characterized by challenges with social skills, repetitive
behaviors, speech and nonverbal communication, as well as by unique strengths and differences.

Directions: Please circle the number that indicate how much you agree/disagree with the following statements.

Strongly
Agree

Moderately
Agree

Somewhat
Agree

Neutral

Somewhat
Disagree

Moderately
Disagree

Strongly
Disagree

1

I am confident in my ability to provide care to ASD patients.

7

6

5

4

3

2

1

2

Using ASD knowledge increases certainty that the proposed
treatment is effective.

7

6

5

4

3

2

1

3

I consider medical comorbidities unique to ASD when seeing
a patient

7

6

5

4

3

2

1

PRIMARY PROVIDER EDUCATION AND ASD

56

4

I know the diagnostic criteria for ASD

7

6

5

4

3

2

1

5

I understand the most common conditions associated with
ASD.

7

6

5

4

3

2

1

6

I am aware of online resources for providers and ASD
patients.

7

6

5

4

3

2

1

7

I know what kind of sensory accommodations might be
needed with ASD patients.

7

6

5

4

3

2

1

8

I know what kind of communication accommodations might
be needed with ASD patients.

7

6

5

4

3

2

1

9

I am confident that I will provide instructions and follow up
that ASD patients will understand

7

6

5

4

3

2

1

10

I am able to easily research what I need to know about ASD.

7

6

5

4

3

2

1

11

I know how to modify my plan of care for adults with ASD.

7

6

5

4

3

2

1

12

I welcome adults with ASD into my practice.

7

6

5

4

3

2

1

13

There are both risks and benefits to adult ASD diagnosis

7

6

5

4

3

2

1

Directions: The following questions are asking about your personal opinion about ASD. There are no correct answers. Please circle the number that
indicate how much you agree/disagree with the following statements.

Strongly
Agree

Moderately
Agree

Somewhat
Agree

Neutral

Somewhat
Disagree

Moderately
Disagree

Strongly
Disagree

14

There is an ASD Epidemic

7

6

5

4

3

2

1

15

Childhood vaccines can cause autism.

7

6

5

4

3

2

1

PRIMARY PROVIDER EDUCATION AND ASD

57

16

Autistic individuals are geniuses

7

6

5

4

3

2

1

17

Autistic individuals do not feel emotions.

7

6

5

4

3

2

1

18

Autistic individuals cannot speak.

7

6

5

4

3

2

1

19

Autism can be cured.

7

6

5

4

3

2

1

PRIMARY PROVIDER EDUCATION AND ASD

58

The main objective of this section is to assess the level of knowledge of adult health care
professionals in the area of autism spectrum disorders (ASD) in order to improve health care
for this population. Directions: Please circle the best answer.
20) What is the current estimated prevalence of autistic spectrum disorders?
a) 1 in each 38 children
b) 1 in each 1100 children
c) 1 in each 68 children
d) 1 in each 100,000 children
e) I don't know
21) What is the approximate distribution by sex of autistic disorders?
a) 1 male for each 4 females
b) equal among the sexes
c) 1 female for each 4 males
d) 1 female for each 10 males
e) I don't know
22) What is the probable etiology of autism?
a) Unaffectionate parents with an unfavorable family environment
b) Childhood vaccines
c) Genetic-environmental interaction
d) Completely genetic
e) I don't know

PRIMARY PROVIDER EDUCATION AND ASD

59

The main objective of this section is to assess the level of knowledge of adult health care
professionals in the area of autism spectrum disorders (ASD) in order to improve health care
for this population. Directions: Please circle the best answer.
23) Which of the criteria below make up part of the autism diagnosis by the DSM-IV?
I) Repetitive and stereotypical motor mannerisms
II) Lack of social or emotional reciprocity
III) Restricted, repetitive patterns of behavior, interests or activities which appeared
before 4 years of age
IV) Retarded or absence of language development
V) Presence of mental retardation
a) I, II, III
b) I, II, IV, V
c) I, II, IV
d) All of the above
e) I don't know
24) In relation to an autism diagnosis, which statement is true about additional diagnoses?
a) 90% of autism cases present some degree of associated mental retardation
b) 30% have associated epilepsy
c) 50% of autistic patients never speak
d) 5-10% present with a stop or regression of language after 2 years of age.
e) I don't know

PRIMARY PROVIDER EDUCATION AND ASD

60

The main objective of this section is to assess the level of knowledge of adult health care
professionals in the area of autism spectrum disorders (ASD) in order to improve health care
for this population. Directions: Please circle the best answer.
25) What is the principal therapeutic approach recommended for autistic disorders?
a) Ludo therapy
b) Psychoanalysis
c) Behavioral Therapy
d) Psychotropic Medications
e) I don't know
26) Which of the following symptoms can be minimalized by the use of medications?
a) Stereotyped movements, visual contact, repetitive speech
b) Insomnia, hyperactivity, aggressiveness
c) Visual (eye) contact, aggressiveness, verbalizations
d) Stereotyped movements, insomnia, repetitive speech
e) I don't know
1-3 Months Post Education Session
27) Have you cared for somebody with ASD since the education session?
a) Yes
b) No

PRIMARY PROVIDER EDUCATION AND ASD

61

Strongly
Agree

Moderately
Agree

Somewhat
Agree

Neutral

Somewhat
Disagree

Moderately
Disagree

Strongly
Disagree

28

I was able to use this education in planning and delivering
care.

7

6

5

4

3

2

1

29

I found this education helpful.

7

6

5

4

3

2

1

30

I would recommend this training to others.

7

6

5

4

3

2

1

Thank you for taking the time to complete this survey.

PRIMARY PROVIDER EDUCATION AND ASD
Appendix L
Demographic Questionnaire
1. What is your gender?
o
o

Male
Female

2. What is your race/ethnicity?
o
o
o
o
o
o

American Indian/Native American
Asian or Pacific Islander
Black/African American
Hispanic/Latino
White/Caucasian
Other

3. What is your age? ____________
4. What type of provider are you?
o
o
o
o

Nurse Practitioner
Physician
Physician’s Assistant
Other ________________________________

5. What is your clinical specialty?
o
o
o

Family Practice
Internal Medicine
Other ________________________________

6. How many years have you been in practice? __________________
7. Have you previously taken any autism education?
o

Yes
o

o

No

If yes, please describe __________________________________________________

8. How often do you see a patient with known or suspected ASD?
o
o
o
o
o
o
o

Daily
Weekly
Monthly
Every 2-3 months
Every 4-6 months
Yearly
Never

9. Clinic Site

62

PRIMARY PROVIDER EDUCATION AND ASD
o
o
o
o
o

Baseline
Gateway
Goodyear
Maryvale
Tempe

63

PRIMARY PROVIDER EDUCATION AND ASD

64

Appendix M
Demographics
Age and Years in Practice
N

Minimum

Maximum

Std. Deviation

Age

15

29

50

5.287

Years in Practice

17

.00

40

9.546____

Characteristic

Frequency

Percent

Cumulative Percent

Race/Ethnicity
Asian/Pacific Islander

4

23

23

Black/African American

1

6

29

Hispanic/Latino

1

6

35

11

65

100

Male

9

53

53

Female

8

47

100

5

29

29

11

65

94

1

6

100

No

13

76.5

76.5

Yes

4

23.5

100

Weekly

1

6

6

Monthly

5

29

35

Every 2-3 Months

2

12

47

Every 4-6 Months

6

35

82

Yearly

2

12

94

Non-Hispanic White
Gender

Provider Type
Nurse Practitioner
Physician
Physician Assistant
Previous ASD Education

ASD Visit Frequency

PRIMARY PROVIDER EDUCATION AND ASD
Never

65

1

6

100

Gateway

7

41

41

Maryvale

5

29.5

70.5

Tempe

5

29.5

100

Clinic Site

PRIMARY PROVIDER EDUCATION AND ASD

66

Appendix N
Friedman Test
Statistics

N

Pre-test

Post-Test

1-month

Pre-test

Post-test

1-month

Attitude

Attitude

Attitude

Belief

Belief

Belief

Valid

17

17

17

17

17

17

Missing

0

0

0

0

0

0

Mean

57.49

74.31

87.32

25.77

26.71

33.67

Median

56

75

88

30

33

40

Std. Deviation

11.9191

5.0463

9.8948

11.1665

11.0610

11.0632

Minimum

36

65

70

7

8

14.4

Maximum

72.3

83

105

38

38

45

Pre-test

Post-test

1-month

Knowledge

Knowledge

Knowledge

17

17

17

0

0

0

Mean

3.59

4.94

4.12

Median

4

5

4

Std. Deviation

1.3257

.6587

1.6156

Minimum

1

4

1

Maximum

5

6

6

Statistics

N

Valid
Missing

Ranks

PRIMARY PROVIDER EDUCATION AND ASD

67

10
9

8.94

8
7

8
6.91

6
5
4

6
4.71

4.44

1
0

2.5
1.5

Pre

Post

Test Statistics - Friedman Test
N
Chi-Square
df
Asymp. Sig.

Attitude
Belief

3
2

Knowledge

17
130.483
8
.000

2

1 Mo Post