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Evaluating the correlation between a revised question ordering and the approach to asking about developmental disabilities, affecting parents reporting prevalence in their child’s development disability.
- SPECIFIC AIMS Repeat your intention and identify method used.
This quantitative research study is being conducted to describe the association between the rearranging and use of words in a questionnaire causing parents of children diagnosed with autism spectrum disorder causing parents to identify their child with another developmental disability following changed to the National Health Interview Survey NHIS questionnaire.
The main research question guiding this correlational research study is:
What is the association between questionnaire changes to the National Health Interview Survey and parents correctly identifying their children’s correct developmental disability?
The sub-question is:
How can access to quality care impact children with developmental disabilities decline the progression of the disease?
The ordering and new approach to asking about developmental disabilities in the NHIS likely affected the prevalence estimates of these conditions. Therefore, once diagnosed correctly there will be a decline in progression of conditions.
- LITERATURE REVIEW
Individuals that are diagnosed with developmental disabilities generally demand a substantial number of services and treatments to address both behavioral and developmental challenges, which can sometimes be stressful for parents taking care of them (Zablotsky, 2015, p.1). It has been shown that when measuring the commonness of these condition using the National Health Interview Survey can potentially aid to assess the proper effectiveness for services used and interventions that may improve long-term outcomes if the information of the conditions is properly reported (Selick, Durbin, Casson, Lee, & Lunsky, 2018, p. 349). There can be many challenges faced when measuring these outcomes, for an example, when estimating the prevalence of developmental disabilities changing definitions, as well as disregarding the probability of other present conditions that may fall under the term of developmental disabilities (Okoro, Hollis, Cyrus, & Blake, 2018, p. 883). Also, according to Okoro et al., (2018) This can lead to difficultly when trying to interpret trends in prevalence over time because of diagnostic substitution which is when one label for a condition becomes replaced with another, causing an apparent decrease in the rate of the first condition and increase in the rate of the second condition. Another challenge can be respondents understanding the questions asked being asked, remembering the diagnoses, and accurately reporting that diagnosis within the survey context (Vohra, Madhavan, Sambamoorthi, & St Peter, 2014, p. 816). Since intellectual and developmental disability individuals are an extremely vulnerable population with complex health needs (Selick et al., 2018, p. 349). As a result, when using the NHIS researches has begun to implement specific questions to each developmental disability allowing reporting conditions correctly can play a critical role in providing early access to quality care and accurate diagnosis, early intervention, and linking individuals to needed community supports (Selick et al., 2018 p. 349).
While prior research has examined the impact of patient access to healthcare based off individuals with developmental disabilities geographic locations and race, no research has examined the correlation between the incorrect diagnosis based off the NHIS and how it can affect the future quality of healthcare and preventive care if parents can interpret the questionnaire correctly which can improve conditions. The purpose of the correlation study is to discuss the lifetime prevalence in individuals with developmental disabilities can have if their diagnosed correctly using the National Health Interview Survey which is used in assessing the adequacy of available services which possibly can help to improve long-term outcomes
- RESEARCH DESIGN AND METHODS
- Rationale/ Overview: This study will use a non-experimental design and correlation and regression analyses to address the research question which looks to determine if a relationship exists between the developmental disabilities’ questions in the National Health Interview Survey which were changed from previous years, including question reordering and new approaches to asking specific questions about developmental disabilities affect the patient’s prevalence. The research will employ data collection of prior medical reports to assess the patient’s progression over time and face-to face interviews from parents to assess the quality of care provided.
a. Research Site:The Center for Autism Spectrum Disorders is an interdepartmental center that is being formed within the Neurosciences Institute to provide clinical consultative services for people with autism spectrum disorders and developmental disabilities in Stony Brook, NY. Children and teens with autism spectrum disorders and developmental disabilities that signed up for care will be included in the study.
b. Study Sample: Random sampling will be used for this research project. Children and teens that come to The Center for Autism Spectrum who would like to participate in this study will have to provide prior medical records from all physicians since birth and parents will have to complete survey about prior services from other institution, this will provide researches with the prior concerns that wasn’t address which will be addressed throughout the care. Assessments will be completed twice a year (every six months) at The Center for Autism Spectrum Facility. Two weeks before the first session, the patients or family member if the patient is unable to provide assent, will be given a consent form outlining the program and the scope of the study. A member from the research team will sit with each family to review or read aloud the consent form and answer any questions. All patients or parents who agree to participate in the study will be included in the data collection. Any patient or parent who declines to participate in the study will still be able to participate in the program.
c. Screening: All patients and parents will be included if the participant completed the National Health Interview Survey
1. Participants are patient of The Center for Autism Spectrum whose parents filled out the National Health Interview Survey (NHIS) with or without difficulty understanding the questionnaire.
1. Parents that didn’t fill out the NHIS questionnaire and patients over the age of twenty-one.
a. Data Collection: Parents that filled out the NHIS survey improperly who have signed up to participate in the assessment of the care received will be offered to all participants during the spring of 2018 will be asked to participate in the research study looking to determine a relationship between the provided answers to the questionnaire cause the child with developmental disabilities to be diagnosed with the correct condition. The patient will be asked to fill out a consent form at the start of the program, which runs until the patient is thirteen years old. Prior to filling out the forms there will be an initial meeting time will be structured to allow time for the patients to review the consent form, as questions, and to learn about the benefits and risk, if any of this program. If a resident does not wish to participate, the data collection at the end. Immediately following the completion of the program, a member from the research team will review the patients’ health charts and hand out the survey to the patients who have agreed to participate in the study.
b. Data Analysis:
This cross-sectional survey will be used to collect data twice throughout the year. To answer the research question, the researchers will conduct a spearman rank order correlation to examine the relationship between diagnosis and decrease in developmental conditions. All data will be presented graphically on a scatterplot.
- HUMAN SUBJECTS RESEARCH PROTECTION FROM RISK
- Risk to Subjects: This study does not pose any risk to the subjects. It is anticipated that no harm will result from participation in this data collection since it seeks to collect data from the NHIS, interview questions and, survey questions from the participants. The survey looks to record the individual with developmental disabilities conditions from when they start the program until the end of the program which would be when they turn twenty-one and is not anticipated to create any risk or harm for the participants. Although no issues are anticipated, as a precaution, psychologists, and physicians from The Center for Autism Spectrum will be available to address any emotional distress issues that may occur for any of the participants.
- Adequacy of Protection Against Risks:The patient’s information will be scanned and recorded into their own electronic medical record and there will be no paper documents once the information is scanned the paper will be shredded. The only ones that will have access to this information will be the physicians that’s been assigned to that specific patient and the information will be stored on a password protected computer in the School of Health Technology & Management. There are no other anticipated risks.
- Potential Benefits of Proposed Research to the Subjects and Others:It is anticipated that the subjects in this study will benefit from participation because it will minimize the potential for misdiagnosed cases in future patients and the benefits will allow the participants to be treated with their correct diagnosis.
- Importance of the Knowledge to be Gained: The knowledge gained will help to align NHIS estimates with other surveillance efforts and minimize the potential for misdiagnosed cases to be captured within prevalence estimates.
- Angus, D. J., De Rosnay, M., Meerum Terwogt, M., Lunenburg, P., & Begeer, S. M. (2015). Limitations in social anticipation are independent of imaginative and Theory of Mind abilities in children with Autism but not in Typically Developing children. (2015). Autism, (5), 604. https://doi-org.proxy.library.stonybrook.edu/10.1177/1362361314537911
- Avra Selick, Janet Durbin, Ian Casson, Jacques Lee, & Yona Lunsky. (2018). Barriers and facilitators to improving health care for adults with intellectual and developmental disabilities: what do staff tell us? Health Promotion and Chronic Disease Prevention, Vol 38, Iss 10, Pp 349-357 (2018), (10), 349. https://doi.org/10.24095/hpcdp.38.10.01
- Lin, E., Balogh, R., Isaacs, B., Ouellette, K. H., Selick, A., Wilton, A. S. ., … Lunsky, Y. (2014). Strengths and Limitations of Health and Disability Support Administrative Databases for Population-Based Health Research in Intellectual and Developmental Disabilities. Journal of Policy & Practice in Intellectual Disabilities, 11(4), 235–244. https://doi.org/10.1111/jppi.12098
- Okoro, C. A., Hollis, N. D., Cyrus, A. C., & Griffin-Blake, S. (2018). Prevalence of Disabilities and Health Care Access by Disability Status and Type Among Adults – United States, 2016. MMWR: Morbidity & Mortality Weekly Report, 67(32), 882–887. https://doi-org.proxy.library.stonybrook.edu/10.15585/mmwr.mm6732a3
- Maenner, M. J., Blumberg, S. J., Kogan, M. D., Christensen, D., Yeargin-Allsopp, M., & Schieve, L. A. (2016). Prevalence of cerebral palsy and intellectual disability among children identified in two U.S. National Surveys, 2011–2013. ANNALS OF EPIDEMIOLOGY, (3), 222. Retrieved from http://proxy.library.stonybrook.edu/login?url=http://search.ebscohost.com/login.aspx?direct=true&db=edsbl&AN=RN376525921&site=eds-live&scope=site
- Vohra, R., Madhavan, S., Sambamoorthi, U., & Peter, C. S. (2014). Access to services, quality of care, and family impact for children with autism, other developmental disabilities, and other mental health conditions. Autism, 18(7), 815–826. https://doi.org/10.1177/1362361313512902
- Zablotsky, B. (2015). Estimated prevalence of autism and other developmental disabilities following questionnaire changes in the 2014 National Health Interview Survey Retrieved from http://proxy.library.stonybrook.edu/login?url=http://search.ebscohost.com/login.aspx?direct=true&db=edsgpr&AN=edsgpr.000973802&site=eds-live&scope=site
- Zuckerman, K. E., Chavez, A. E., Regalado Murillo, C., Lindly, O. J., & Reeder, J. A. (2018). Disparities in Familiarity With Developmental Disabilities Among Low-Income Parents. Academic Pediatrics, 18(8), 944–951. Retrieved from http://proxy.library.stonybrook.edu/login?url=http://search.ebscohost.com/login.aspx?direct=true&db=rzh&AN=132843354&site=eds-live&scope=site
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