Introduction

Human immunodeficiency virus (HIV) antibody testing is defined by the World Health Organization as "a serologic procedure for detecting HIV antibody (or antigen) from an individual person, whether recommended by a health care provider or requested by an individual".1^(p.2) Individuals diagnosed with HIV suffer psychosocial outcomes arising from psychological and social stress, especially due to fear of rejection and social reactions of stigma.2,3 Even those who test HIV negative can disproportionately increase the risk of HIV transmission through risk-taking attitudes that lead to actions sustaining the epidemic.4 Although a recent systematic review reported psychological responses relating to HIV testing, such as knowledge, attitudes and perceptions, it excluded the psychological responses following HIV testing.5 Psychosocial outcomes, including psychological responses, can negatively affect the acceptance of HIV test results, thus delaying access to early treatment and possibly interfering with adherence to treatment. This can result in inequitable access to care, undermining the effective clinical management of the disease. Such health inequities are deemed avoidable and unjust health differences.6 Addressing inequitable access to care after HIV testing is essential for quality improvement. There is a major knowledge gap of systematic study in the literature about psychosocial outcomes and their measurements immediately following HIV testing. It is important to analyze the association between psychosocial outcomes and delays to accessing care.

Multiple pathways to HIV testing include facility-based HIV testing services, voluntary counseling and testing, provider-initiated counseling, rapid point-of-care testing and HIV self-testing.7 The clinical benefits that follow HIV testing, particularly treatment, are well documented.8-10 Yet research shows that nearly 25% of persons access antiretroviral treatment after three months, while almost 80% enter care within a year following HIV testing in both developed and developing countries.11-13 Delays to accessing treatment following HIV testing are costly, lead to poor health outcomes and drive HIV transmission.14,15 Most studies examining delays to accessing care rely predominantly on surveillance or medical records,11,16,17 which are unable to capture the psychosocial barriers to care. Other studies focus on structural barriers, such as poor linkage between HIV testing facilities and antiretroviral centers,11,17 or on socio-demographic factors.11,13

The term "psychosocial" draws on the view that health is "a state of complete physical, mental and social well-being, and not merely the absence of disease and infirmity".18^(para.1) This can be confusing because psychosocial considers both the mental and social correlates of health, which focus on different phenomena. For instance, the mental effects immediately following HIV-positive results, such as shock, anger, anxiety and depression, can lead to loss of hope19 or even suicidal ideation.2 Persons with a new HIV diagnosis can also experience physical and verbal abuse at the relational level or be ostracized by friends, family and community,20 which may trigger mental stress. Organizational failures, such as lack of treatment options and systems to provide emotional support, education and preventive information, can also impact mental outcomes in those with a new HIV diagnosis.21 Furthermore, persons with a negative test result can increase HIV transmission through risk-taking attitudes and behaviors if they are not provided with educational and preventive information.4 At the same time, policies and community beliefs that perpetuate HIV/AIDS stigma and discrimination may increase anxieties in persons with a new HIV diagnosis.2,3

While studying psychosocial outcomes is important because of the potential to inform public health about the mental and social domains, some scholars recommend clarifying the term "psychosocial" to avoid confusion and misclassifying outcomes.22 We found an ecological framework by Richard, Gauvin and Raine, which consists of "a way of approaching issues that accounts for interrelationships between persons and settings".23^(p.308) This approach draws on "constructionist premises, collaborative style, and social processes" in developing new knowledge.23^(p.308) It represents diverse ecological models with a long history of contribution to the conceptual and methodological developments from a variety of disciplines and fields, such as public health, sociology, biology, education and psychology.23 An ecological model is "a formalized conceptualization of the individual and environmental determinants of health behaviors and public health outcomes",23^(p.308) and a determinant is "a construct or factor thought to play a causal role in explaining a health behavior or outcome".23^(p.308) The importance of ecological models is to analyze the environmental causes of behavior and to identify environmental interventions.24 The emphasis on environmental causes of behavior is driven primarily by disappointments with some individually focused lifestyle-change programs within health-promotion interventions.24 The ecological approach assumes the need to fully understand the causal link between determinants and health outcomes by explaining the inherent complexity.23 As a result, some models categorize the environment into multi-level influences, such as intrapersonal, interpersonal and broader organizational, community and policy levels,24 which we find useful for analyzing psychosocial outcomes in this scoping review. Multi-level refers to "numerous planes, echelons, or layers".23^(p.308)

In this scoping review, we will apply the above categorization to analyze variables relating to the outcomes in the mental and social domains. The mental domain refers to concepts for measuring the emotional, cognitive and spiritual outcomes. The social domain refers to concepts for measuring the relational and broader organizational, community, and policy levels. Contemporary ecological models in public health are broader in perspective than earlier models because they are about more than integrating multiple levels of determinants or interventions.23 The ecological approach is particularly useful to this scoping review, which seeks available evidence that may have real implications for the HIV care cascade at multiple levels.

At the time of this review, the absence of systematic study on psychosocial outcomes after HIV testing prevents the development of a consensus on a core or minimum standardized set of psychosocial outcomes following HIV testing. This makes it difficult to report on findings about psychosocial outcomes that can inform clinical decision-making and identify further research in this area, such as the nature and influencers of the relationship between psychosocial outcomes and delays to accessing care. Researchers working with the Outcome Measures in Rheumatology (OMERACT) initiative have created a comprehensive conceptual framework to develop core outcome measures for rheumatology that can be used as a template in other areas of health care.25 The framework was developed to address the lack of standardization of outcome measures, which limits the ability of clinical trial evidence to inform healthcare decisions.25 According to OMERACT, this lack of standardization can be addressed by agreeing on a minimum core set of outcome measures relevant to patients and decision makers for each health condition.25 The OMERACT researchers recommend a process that includes a literature review and consensus process to develop a core set for any specific health condition, starting with identifying the (sub)-domains or concepts and followed by identifying applicable measurement instruments for the (sub)-domains. For our purposes, the specific health condition is psychosocial outcomes immediately following HIV testing.

The added value of our scoping review will be to provide available information on the range of outcomes, including interpersonal and broader organizational, community and policy levels. The evidence can be used to reach an agreement on a core set of psychosocial outcomes, thus improving the reporting and identification of further research targets, such as the association between these outcomes and delays to care, which are critical to inform quality improvement.23 For our purposes, quality improvement means improving support services to facilitate acceptance of HIV diagnosis and not only minimizing the harms of a positive diagnosis (such as failure to get treatment, failure to disclose status, depression or suicide), but also addressing any concerns arising from a negative test result. Lack of improvement in these areas can act as a barrier to the uptake of HIV testing.

We will focus on identifying concepts used to describe psychosocial outcomes and their measurements in persons with a new negative or positive HIV test result. We have selected this population because psychosocial outcomes after a positive or negative HIV test result can be different among various populations in all ages. These differences must be documented and reported because different outcomes may call for different support requirements. This information can be used to inform HIV testing policy and clinical practice to reflect the views and needs for patients of all ages.

The preliminary search for existing scoping reviews on this topic has been conducted in Google Scholar, the Cochrane Database of Systematic Reviews, the JBI Database of Systematic Reviews and Implementation Reports and Ovid MEDLINE (see Appendix I). No scoping reviews on psychosocial outcomes following HIV testing in persons with a new negative or positive HIV test result were identified. The preliminary research did show evidence of existing primary studies21,26,27 to examine our scoping review question. These studies provide evidence about narratives of gay men immediately after diagnosis of acute or recent HIV infection,26 and experiences of women receiving a positive HIV test result following antenatal screening.21,27 A scoping review has been selected because it typically focuses on a general integration of a wide body of literature and does not assess the quality of included studies. The objective of this scoping review is to map the range of psychosocial outcomes immediately following HIV testing and the measurements reported in the literature.

Review questions

Two questions will guide the scoping review: i) What types of psychosocial outcomes are reported following human immunodeficiency virus (HIV) testing, specifically in individuals with a new negative or positive test result? ii) What measures are used to assess these psychosocial outcomes?

Inclusion criteria

Participants

The proposed scoping review will include all individuals tested for HIV, regardless of sex or age, reported in the articles published from January 1, 2007 to the present date. The year 2007 represents a decade after the introduction of highly active antiretroviral therapy in 1996.28 Psychosocial outcomes of newly tested individuals, with either negative or positive results, will be included. Only studies reporting the early phase covering a one-year period after HIV diagnosis will be included, because most persons with newly diagnosed HIV enter into treatment and care within this period.13 Patients who delay accessing treatment for one year or more after diagnosis will be excluded. The middle (after beginning treatment) and late phases will be excluded due to time constraints. The study will be limited to English.

Concept

The concept of psychosocial outcomes will refer primarily to uncertainties or fears that individuals experience or anticipate immediately following HIV testing. These may be at the emotional, cognitive or spiritual levels, as well as at the relational, organizational, community or policy levels. Because HIV still carries stigma, individuals who test positive are concerned about how others in their social environment will respond. The initial psychosocial outcomes after any pathway to HIV testing outlined above are eligible for inclusion. Facility-based HIV testing services are provided in a health facility or laboratory setting.7 Provider-initiated testing and counseling are routinely offered in a health facility for high-risk groups or in clinical settings where HIV prevalence is high, such as in antenatal clinics and tuberculosis clinics, and require the consent of patients.7 Although HIV testing is now routine, voluntary counseling and testing in dedicated stand-alone facilities, which was an early model of HIV testing, are still offered to complement other testing pathways,7 and will be included. Rapid point-of-care testing, which often involves a pinprick in the finger and takes only a few minutes (10 to 30 minutes), is offered even in non-traditional community-based settings, such as homes, workplaces, parks, bars and educational establishments.7,29 HIV self-testing is performed and interpreted by an individual, often in private.2 The continuum of pathways to HIV testing, from open, unsupervised HIV testing to supervised, semi-restricted and clinically restricted testing, will be included in the review.

HIV testing on its own cannot motivate people to cope with the emotional and social difficulties following diagnosis. Counseling or provision of information is required in all HIV testing types.7,29 Post-test and follow-up counseling will be included. Post-test counseling supports people in understanding their test result, whether positive or negative.30 Follow-up counseling helps clients cope with issues arising from knowing their HIV status, such as disclosure, whether positive or negative.30 Pre-test counseling, which gives an individual opportunities to explore and analyze risk status when considering HIV testing, will be excluded.30

This scoping review will consider outcomes to be any measured beneficial or harmful effects in the mental and social domains following any of the above HIV testing types. This definition draws from OMERACT, who define outcomes as "any identified result in a (sub)-domain arising from exposure to a causal factor or a health intervention".25^(p.749) (Sub)-domain refers to a "component of Core Area: a concept to be measured, a further specification of an aspect of health, categorized within a Core Area".25^(p.749) Core Area is "An aspect of health or health condition that needs to be measured to appropriately assess the effects of a health intervention. Core Areas are broad concepts consisting of a number of more specific concepts called domains".25^(p.749)

In this study, the core area refers to psychosocial outcomes following HIV testing. (Sub)-domains are the specific concepts to describe particular outcomes such as "stigma", "depression" and others measured using various instruments. The measurement tools of the psychosocial domains are defined here according to the Core Outcome Measures in Effectiveness Trials (COMET) initiative, which defines an outcome measurement instrument as "a tool to measure an outcome, where the tool can be a single question, a questionnaire, a score obtained through physical examination, a laboratory measurement, a score obtained through observation of an image etc".31^(para.1)

This approach of defining (sub)-domains and specific measurement tools is adapted from the models of OMERACT and the COMET initiative, which is dedicated to developing methods for standardizing outcome measures for randomized trails.25,31 Both of these models use a systematic approach to defining a "core set" of domains that should be measured, then identifying specific measurement tools for each domain. We will collect data on psychosocial (sub)-domains and their specific measurement tools in persons with a new negative or positive HIV test result. Clinical outcomes after HIV testing will be excluded. Psychosocial outcomes after initiating treatment and care, as well as studies on concerns of parents/caregivers relating to psychosocial outcomes of their children, will be excluded from the review.

Context

Any settings in low-, middle- and high-income countries, as classified by the World Bank, will be included.32

Types of studies

All study designs will be included. Only articles published in English from 2007 to the present date will be included to provide the most recent and relevant data useful for quality improvement.

Methods

The scoping review will be conducted using the methodology for scoping reviews outlined by JBI.33,34

Search strategy

The search strategy will aim to locate both published and unpublished studies. With the help of a professional librarian at the University of Ottawa, an initial limited search about the psychosocial outcomes following HIV testing was carried out using the online databases Ovid MEDLINE and Embase after a preliminary search on Google Scholar to identify articles on the topic. The text words contained in the titles and abstracts of relevant articles and the index terms used to describe the articles were used to develop a full search strategy for MEDLINE, Embase and PsycINFO (see Appendix I). The search strategy, including all identified keywords and index terms, will be adapted for each included information source. The reference list of all identified reports and articles will be searched for additional studies.

Information sources

All sources with evidence about psychosocial outcomes immediately following HIV testing, such as primary research studies, systematic reviews, meta-analyses, letters and guidelines, will be included. The databases to be searched include Ovid MEDLINE, Embase and PsycINFO. Sources of unpublished studies and gray literature will be searched, such as conference proceedings, graduate dissertations and unpublished studies about HIV testing in local communities.

Study selection

Following the search, we will use Ovid multifile auto-search to de-duplicate in the Ovid platform across Ovid MEDLINE, Embase and PsycINFO, before proceeding to a hand search for any remaining duplicates. Titles and abstracts will be screened for assessment through consultations between two reviewers in an iterative process whereby the selected studies will be repeatedly weighed against the above pre-specified inclusion criteria. The full text of selected citations will be assessed in detail against the inclusion criteria by two reviewers. Reasons for exclusion of full-text studies that do not meet the inclusion criteria will be recorded and reported in the scoping review. Any disagreements that arise between the reviewers at each stage of the study selection process will be resolved through discussion in a review team of five committee members. The results of the search will be reported in full in the final report and presented in a Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) flow diagram.35

Data extraction

Using Microsoft Excel, data will be extracted from studies included in the scoping review through consultations between two reviewers, iteratively, to make sure that the research objective and question are being achieved. As shown in Appendix II, the data extracted will include specific details about the author(s), year of publication, country of origin (where the study was published or conducted), aims/purpose, study population and sample size (if applicable), methodology/methods, study period, intervention if applicable, outcome (sub)-domains or concepts, measurements and key findings. Charting the results will be done through a careful recording of identified studies in an iterative process whereby the charting table will be continually updated by the review team. Any disagreements that arise between the reviewers will be resolved through discussion in a review team of five committee members. Authors of papers will be contacted to request missing or additional data, where required.

Data presentation

The findings about the psychosocial domains following HIV testing will be presented in narrative form including tables and figures to aid in data presentation, where appropriate. We will follow three steps proposed by OMERACT to identify the (sub)-domains (the specific concepts) regarding the initial psychosocial outcomes following HIV testing and their measurement tools.25 The three steps are: i) defining the setting of the core set, ii) determining what to measure based on a literature review to arrive at a core domain set and iii) deciding how to measure the selected core domains based on the review.25 To analyze the data, we plan to use the socio-ecological approach that understands health behavior outcomes, including HIV testing behavior outcomes, as a result of intrapersonal attributes interacting with particular environments in shaping individual and population health outcomes at multiple levels.23,24 The levels include the intrapersonal, inter-personal, organizational, community and policy levels.24 A tentative plan for the presentation of the results to be further refined is presented in the draft shown in Appendix III.

Acknowledgments

We acknowledge the assistance of Dr. Christina Godfrey, Scientific Director of the Queen's Collaboration for Health Care Quality: A Joanna Briggs Institute Centre of Excellence, for her support. Also, we also acknowledge the assistance of community-based HIV/AIDS organizations and frontline health leaders providing HIV testing, namely, AIDS Committee of Ottawa and Somerset West Community Health Centre in Ottawa.

This scoping review protocol will contribute toward a Doctor of Philosophy degree (PhD), population health, Faculty of Health Science, for JN.

Appendix I: Search strategy for Ovid MEDLINE

Conducted January 17, 2018

Appendix II: Data extraction tool

Appendix III: Psychosocial (sub)-domain outcomes and their measurements after HIV testing

References