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A strong primary care system is vital to overall health. Research on the primary care of people with autism spectrum disorder (ASD) has mostly focused on children. A synthesis of the existing literature related to the quality of primary care for the adult population with ASD would elucidate what is known about the topic as well as inform future research and clinical practice.
The purpose of our scoping review is to describe what is known about the quality of primary care for adults with ASD and identify knowledge gaps.
Prior to beginning the literature search, we reviewed literature related to defining both primary care and primary care quality to establish the context and concept of the research question. The search strategy was designed and executed by a research librarian. The MEDLINE, CINAHL, EMBASE, PsycINFO, and ProQuest Dissertations and Theses databases were searched for relevant literature. Grey literature will include relevant reports from government websites and associations with a focus on ASD. Two members of the research team will independently screen the academic and grey literature. Quantitative, qualitative, or mixed methods study designs involving the quality of primary care services or patient-centered care for adults with ASD are eligible for inclusion in our scoping review. Studies that make it past the full-text review will undergo data extraction and quality appraisal by 2 independent reviewers. The data extraction results will be presented in a tabular format to clearly present what is known about the quality of primary care for adults with ASD; this table will be accompanied by a narrative synthesis. Literature selected for extraction will be coded for themes, which will form the basis of a thematic synthesis. The scoping review will follow the guidance proposed by the Joanna Briggs Institute.
The search of electronic databases was conducted in October 2020, and it returned 2820 results. This research is still in progress. The results from our scoping review are expected to be available by fall 2021.
The results from our scoping review will be useful for guiding future research on the quality of primary care for adults with ASD.
PRR1-10.2196/28196
Autism spectrum disorder (ASD) was first described in 1943 by Kanner [
There has been much research on defining the attributes of primary care and the quality of care [
The objective of our scoping review is to investigate the evidence related to the quality of primary care for adults with ASD. The study will review literature involving an assessment of primary care quality for adults with ASD, including assessments of the quality of the clinical care provided as well as the quality of interpersonal interactions among care providers, patients, and patients’ families [
As ASD is a lifelong condition, individuals diagnosed with ASD will inevitably encounter the adult primary care system. The core features of ASD include difficulties with social interaction and communication, which can complicate the receipt of medical care. Physicians’ lack of understanding of ASD, as well as poor communication with health care providers, presents barriers to health care for adults with ASD [
Our main research question is as follows: what is known about the quality of primary care for the adult population (aged ≥18 years) with a diagnosis of ASD receiving care in the adult primary care system? The following are our secondary research questions: (1) what types of patient-centered health or health service measures have been reported in the literature related to the primary care of adults with ASD and (2) what are the evidence gaps related to the quality of primary care for adults with ASD?
This paper describes a scoping review protocol that follows the guidance proposed by the Joanna Briggs Institute [
The population, concept, and context approach was used to guide the construction of the protocol inclusion criteria [
Our scoping review will include studies involving individuals with ASD who are over the age of 18 years. In terms of presentation, autism symptoms fall along a spectrum but often involve deficits in reciprocal social interaction and communication as well as the presence of restrictive and repetitive behaviors; symptoms must be present “in the early developmental period” [
All studies that include an assessment of primary care quality will be included in the scoping review. To assess primary care quality, we will include any literature assessing patient-centered care as well as the quality of primary care services (ie, prescribing behavior, diagnosis and treatment, the management of chronic diseases, mental health care, maternal and child health care, health promotion, and preventive care) [
Patient-centered care is a complex concept. This scoping review will use a broad definition of patient-centered care and include all studies examining concepts related to patients’ relationships with care providers, patient and family involvement, and contexts in which care is delivered [
The Institute of Medicine defines primary care as “the provision of integrated, accessible health care services by clinicians who are accountable for addressing a large majority of personal health care needs, developing a sustained partnership with patients, and practicing in the context of family and community” [
Our scoping review will consider quantitative, qualitative, and mixed methods study designs for inclusion. Original journal articles, including doctorate theses, as well as grey literature will be considered in this scoping review. Editorials, opinion papers, conference abstracts, and policy analyses will be excluded. There will be no restrictions on the language or year of publication during the literature search. All abstracts will be considered for a full-text review. If an article that is considered for the full-text review is not available in English, then a translation will be requested.
The search strategy for the retrieval of studies from electronic bibliographic databases and grey literature sources was designed by one of the authors (AF)—a research librarian. The initial search will involve a keyword search of MEDLINE (via Ovid). The titles and abstracts of retrieved articles will be reviewed to identify appropriate keywords and index terms. The final search will be designed in MEDLINE (via Ovid), translated, and conducted in select databases.
Ovid MEDLINE search strategy.a
Search number | Search strings | Number of studies found |
1 |
|
78,551 |
2 |
|
95,184 |
3 |
|
81,530 |
4 |
|
496 |
5 |
|
118,668 |
6 |
|
150,228 |
7 |
|
105,743 |
8 |
|
11,093 |
9 |
|
4590 |
10 |
|
7311 |
11 |
|
17,764 |
12 |
|
8429 |
13 |
|
16,172 |
14 |
|
265 |
15 |
|
193 |
16 |
|
2522 |
17 |
|
36,166 |
18 |
|
57,925 |
19 | 17 |
61,672 |
20 | 1 |
507,395 |
21 | 19 |
820 |
aThe date of search was October 22, 2020.
The databases that will be searched will include MEDLINE (via Ovid), CINAHL (via EBSCO), EMBASE (via Embase.com), PsycINFO (via EBSCO), and ProQuest Dissertations and Theses. The search for grey literature will include searching for reports on the websites of departments and ministries of health and associations with a focus on ASD. This will help us to identify reports related to primary care for adults with ASD.
After the completion of the literature search, the research librarian will remove any duplicate citations and upload the remaining citations into Covidence—a web-based software program for managing literature reviews [
Prior to the initial screening phase, the screening questions will be pilot-tested by the two reviewers using a sample of 50 articles retrieved from the MEDLINE (Ovid) database. The team members will meet weekly to discuss discrepancies and make modifications to the eligibility criteria and definitions guiding the review. Once ≥75% agreement is achieved, the initial phase of screening will commence [
The next phase of screening will involve reviewing the full texts of all retained citations by using the same screening questions. Disagreements about study inclusion will be resolved by a third team member (SA). The reasons for exclusion will be documented. The results of the search and screening will be reported in the final scoping review and presented in a PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) flow diagram [
Although scoping reviews do not generally include an appraisal of the quality of included literature [
Two reviewers will use a tool designed by the study team to independently extract information from sources based on predefined criteria. The tool is displayed in
We will evaluate the number of studies related to the quality of primary care for adults with ASD. We will describe the trends in the studied sample, the study designs, the aspects of quality that were measured, and the methods of quality assessment. The results of the scoping review will be presented in a table, which will be accompanied by a narrative synthesis that will connect the results to the research objectives of the scoping review [
The search of electronic databases was conducted in October 2020. A total of 2820 results were retrieved, of which 34 were identified as duplicates. Our scoping review was in the full-text screening phase in February 2021. Data extraction and thematic synthesis will occur during the summer of 2021. The completed scoping review is expected to be submitted for publication in December 2021.
Our scoping review will examine the available evidence related to the quality of primary care for adults with ASD and seek to identify gaps in existing knowledge. The scoping review protocol presented in this paper is novel; to our knowledge, no review has been conducted on the quality of primary care services for the adult population with ASD [
Data extraction form.
autism spectrum disorder
Preferred Reporting Items for Systematic Reviews and Meta-Analyses
This protocol and the subsequent review will contribute toward the primary author’s (SMA) doctoral degree. The review is being supported through grants from the Janeway Research Foundation, Mitacs, International Grenfell Association and Research & Graduate Studies Office, Faculty of Medicine.
None declared.