Autism spectrum disorder (ASD) was first described in 1943 by Kanner [1]. In terms of presentation, ASD 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 [2,3]. The global prevalence of ASD is estimated to be 1 in 160 persons [4]. It has been noted that people with ASD have poorer health outcomes and use the health care system differently from the general population [5,6]. Primary care providers are often an individual’s first point of contact with the health care system, and they facilitate access to additional health care services [7]. The majority of ASD research has focused on children, and as such, most primary care research related to ASD occurs in a pediatric care setting. There is little known about how ASD in adulthood is managed within the adult primary care system. This represents a significant gap in the literature, as people with ASD have a high number of physical and psychiatric comorbidities, which may worsen as they continue to age [5]. The existing literature on the primary care of adults with ASD must be examined to guide future research in this field.

There has been much research on defining the attributes of primary care and the quality of care [7-9]. One framework suggests that there are 2 main measures of quality—accessibility and effectiveness [7]. Under this framework, effectiveness is broken down into the effectiveness of clinical care and patient-centeredness [7]. Similarly, one systematic review indicated that patient-centeredness and the quality of the following primary care services are indicative of primary care quality: the prescribing behaviors of primary care providers, diagnosis and treatment in primary care, the management of chronic diseases, mental health care, maternal and child health care, preventive care, and health promotion [8]. Patient-centered care is “an approach to practice established through the formation and fostering of healthful relationships between all care providers, service users and others significant to them in their lives…underpinned by values of respect for persons, individual right to self-determination, mutual respect and understanding” [10]. The focus of these frameworks on clinical care and patient-centered care makes them appropriate for the study of ASD due to the medical complexities and interpersonal deficits associated with ASD.

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 [7,11]. This conceptualization will guide the screening and extraction of the literature. As indicated by the Joanna Briggs Institute, scoping reviews are an appropriate approach for synthesizing existing evidence and identifying gaps in available knowledge [12]. Furthermore, a preliminary literature search returned few literature results. This undermined the feasibility of a systematic review.

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 [13]. This review may shed light on whether the current adult primary care system is meeting the needs of adults with ASD, which in turn may inspire the design and evaluation of appropriate care models.

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?

The population, concept, and context approach was used to guide the construction of the protocol inclusion criteria [12].

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” [2,3]. To optimize the sensitivity of the search strategy and ensure that all articles related to ASD are included in our study, the search strategy was not restricted to articles involving individuals with a formal diagnosis of ASD. The ASD definitions that were identified in each individual study were used to guide the literature screening and extraction process.

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) [8].

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 [10,11,14]. Literature with structured or unstructured measures of patient-centered care will be included.

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” [15]. In this definition, a clinician “has direct contact with patients and may be a physician, nurse practitioner, or physician assistant” [15]. For the purposes of this review, included studies must indicate that the main provider of primary care is a family physician, general practitioner, internist, or advanced practice nurse (eg, a nurse practitioner) [16]. This scoping review will also include solo and group practice models, provided that the primary responsible provider is one of the provider types listed above. According to the Institute of Medicine, primary care can occur in a variety of health care settings (eg, clinicians’ offices, nursing homes, schools, etc) [15]. The scoping review will include studies in which primary care was delivered in a clinic setting (eg, a walk-in clinic) or during a home visit. Although the population and context of interest for this scoping review include young adults with ASD who are transitioning to adult primary care, studies specific to the process of transitioning from pediatric care to adult care will be excluded.

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.

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 Multimedia Appendix 1. The effectiveness of clinical care and the effectiveness of patient-centered care are the aspects of quality that will be extracted. Following the extraction of data from the first 2 included sources, the two reviewers will meet to determine whether the tool extracts all relevant information and modify the tool as necessary before resuming the review and extraction of the remainder of the sources [12].

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 [12]. The narrative synthesis will involve a summary and description of the findings of the extracted studies. Our scoping review will use a data-based convergent synthesis design whereby all included studies will be analyzed by using a qualitative approach (ie, thematic synthesis) [22]. If required, data transformation will be performed. The analysis will be carried out by one author (SMA) and validated by another author (AW). Qualitative data analysis software will be used to code the included literature for themes. These themes will form the basis of the qualitative thematic synthesis. The results will be reported by using the PRISMA scoping review reporting guidelines [18].