A Behavioral Economic Examination of Sexual Behaviors in the Era of Pre-exposure Prophylaxis via Explanatory Sequential Mixed Methods.

Pre-exposure prophylaxis (PrEP) use may be associated with condom use decisions. The current investigation examined sexual decision-making in the context of PrEP among young adult men who have sex with men (MSM) between 18 and 30 years old, using an explanatory sequential mixed methods design. For the quantitative aim, 99 MSM currently taking PrEP (i.e., PrEP-experienced) and 140 MSM not currently taking PrEP (i.e., PrEP-naive) completed an online survey, including the Sexual Delay Discounting Task (SDDT), which captures likelihood of condom use. For the qualitative aim, 15 people from each group were interviewed about their (1) conceptualizations of risky sex and (2) ways they manage their sexual risk. Participants were, on average, 25.69 years old (SD = 3.07) and 64% White. Results from the quantitative aim revealed, controlling for covariates, PrEP-experienced participants exhibited significantly lower likelihood of (1) using an immediately available condom and (2) waiting for a delayed condom (i.e., sexual delay discounting) compared to PrEP-naive participants. Qualitative themes explaining what young adult MSM consider to be risky sex included: (1) any sex as risky sex, (2) risky sex as "sex without a conversation," and (3) risky sex as sex with risk for physical harm. Themes on ways young adult MSM manage sexual risk were classified as proactive, reactive, and passive. Results suggest that PrEP use is related to condom use decisions. Taken together, quantitative differences in sexual delay discounting, but qualitatively similar conceptualizations and management of risky sex, suggest that the SDDT may be a useful tool in sex research to capture processes (i.e., delay discounting) underlying sexual decision-making that may be missed by traditional self-reports. Implications of results, including potentially providing (good quality) condoms with every PrEP prescription, and future research topics are discussed.

Inclusion of People With Disabilities in Community Health Needs Assessments in Florida, United States.

Community health needs assessments (CHNAs) play a crucial role in identifying health needs of communities. Yet, unique health needs of people with disabilities (PWDs) are often underrecognized in public health practice. In 2010, the Patient Protection and Affordable Care Act (ACA) required the implementation of standardized data collection guidelines, including disability status, among federal agencies. The extent to which guidance from ACA and the U.S. Centers for Disease Control and Prevention has impacted disability inclusion in CHNAs is unknown. This study used a content analysis approach to review CHNAs conducted by local health councils and the top 11 nonprofit hospitals in Florida (n = 77). We coded CHNAs based on mentioning disability in CHNA reports, involving disability-related stakeholders, and incorporating data on disability indicators. Findings indicate that PWDs are widely not included in CHNAs in Florida, emphasizing the need for equitable representation and comprehensive understanding of PWDs in community health planning.

Emergency department patient-centred care perspectives from deaf and hard-of-hearing patients.

BACKGROUND: Deaf and hard-of-hearing (DHH) patients are a priority population for emergency medicine health services research. DHH patients are at higher risk than non-DHH patients of using the emergency department (ED), have longer lengths of stay in the ED and report poor patient-provider communication. This qualitative study aimed to describe ED care-seeking and patient-centred care perspectives among DHH patients. METHODS: This qualitative study is the second phase of a mixed-methods study. The goal of this study was to further explain quantitative findings related to ED outcomes among DHH and non-DHH patients. We conducted semistructured interviews with 4 DHH American Sign Language (ASL)-users and 6 DHH English speakers from North Central Florida. Interviews were transcribed and analysed using a descriptive qualitative approach. RESULTS: Two themes were developed: (1) DHH patients engage in a complex decision-making process to determine ED utilization and (2) patient-centred ED care differs between DHH ASL-users and DHH English speakers. The first theme describes the social-behavioural processes through which DHH patients assess their need to use the ED. The second theme focuses on the social environment within the ED: patients feeling stereotyped, involvement in the care process, pain communication, receipt of accommodations and discharge processes. CONCLUSIONS: This study underscores the importance of better understanding, and intervening in, DHH patient ED care-seeking and care delivery to improve patient outcomes. Like other studies, this study also finds that DHH patients are not a monolithic group and language status is an equity-relevant indicator. We also discuss recommendations for emergency medicine. PATIENT OR PUBLIC CONTRIBUTION: This study convened a community advisory group made up of four DHH people to assist in developing research questions, data collection tools and validation of the analysis and interpretation of data. Community advisory group members who were interested in co-authorship are listed in the byline, with others in the acknowledgements. In addition, several academic-based co-authors are also deaf or hard of hearing.

Evaluation of a Student-Led Community-Based Veterinary Clinic for Disabled Low-Income Clients: A Case Study of the University of Florida PAWS Program.

People with disabilities experiencing low socioeconomic position are priority populations when considering access to veterinary care. In this population, intersectional inequities lead to adverse health outcomes for both those individuals and the companion animals they care for. Community-based veterinary clinics provide an opportunity to target these inequities from a culturally sensitive lens, intending to improve human and animal outcomes. We conducted a process evaluation of a student-led community-based clinic for this population to better understand client satisfaction, assess learning outcomes among veterinary students, and improve program delivery and services. During academic year 2020-2021, the monthly clinics had 162 appointments in total with a median 15 DVM candidates volunteering at each clinic. Clients and volunteers responded to survey questionnaires designed to elicit information about their experiences with the clinic, including open-ended questions for further elucidation of measurable indicators of client-, patient-, and student-level impact. Clients attributed enrollment in the clinic with improved quality-of-life and reduction of financial burden; the program saved clients approximately $2,050 per pet during the evaluation year. Furthermore, the clinic widely facilitated completion of the college's core Primary Care and Dentistry learning outcomes. Beyond curriculum-standard learning objectives, students also reported positive attitude changes and increased readiness to provide care to people with disabilities and people experiencing low socioeconomic position. The results of this evaluation have significant implications for both veterinary and public health pedagogy. Especially, they highlight the significance of community health practice in veterinary trainee education.

"They're Not Willing To Accommodate Deaf patients": Communication Experiences of Deaf American Sign Language Users in the Emergency Department.

Deaf people who use American Sign Language (ASL) are more likely to use the emergency department (ED) than their hearing English-speaking counterparts and are also at higher risk of receiving inaccessible communication. The purpose of this study is to explore the ED communication experience of Deaf patients. A descriptive qualitative study was performed by interviewing 11 Deaf people who had used the ED in the past 2 years. Applying a descriptive thematic analysis, we developed five themes: (1) requesting communication access can be stressful, frustrating, and time-consuming; (2) perspectives and experiences with Video Remote Interpreting (VRI); (3) expectations, benefits, and drawbacks of using on-site ASL interpreters; (4) written and oral communication provides insufficient information to Deaf patients; and (5) ED staff and providers lack cultural sensitivity and awareness towards Deaf patients. Findings are discussed with respect to medical and interpreting ethics to improve ED communication for Deaf patients.

HIV-Related Stigma Moderates the Relation Between Perceived Susceptibility and HIV Testing Intention Among Heterosexual (but Not Sexual Minority) College Students.

HIV-related stigma remains a considerable barrier to engaging at-risk populations in HIV testing and prevention programs. We assessed the moderating role of HIV-related stigma on the relation between perceived susceptibility to HIV and HIV testing intention among college students. We hypothesized that the moderating role of HIV-related stigma would be differential between heterosexual and sexual minority college students. We administered a survey focused on HIV-related knowledge, attitudes, and behaviors in spring 2016 (N = 2,159). We used multigroup path analysis to analyze the hypothesized moderation. HIV-related stigma moderated the relation between perceived susceptibility and testing intention for heterosexual but not sexual minority college students. Specifically, higher HIV-related stigma decreased the association between perceived susceptibility and testing intention. These results demonstrate the importance of priority population segmentation for HIV testing campaigns.

Sexual Risk Behavior and Sexually Transmitted Infections Among College Students With Disabilities.

BACKGROUND: In the past 20 years, there has been an increase in the number of college students with disabilities (SWDs) in the United States. Students with disabilities may have not received relevant, or accessible, sexual health education from medical providers, parents, or school health educators. Because of the lack of this education, the college social environment, and developmental timing of traditional college aged students, SWDs are at risk of engaging in health compromising sexual behavior. METHODS: We conducted a secondary data analysis of traditionally aged (18- to 24-year-olds) college students who completed the National College Health Assessment administered in Fall 2017 and Spring 2018 (N = 95,119). We use prevalence and generalized linear models to describe self-reported sexual health behavior and outcomes among college students without disabilities and SWDs, by disability category. RESULTS: Findings indicate that college students with disabilities-particularly students with attention-deficient hyperactivity disorder, psychiatric conditions, and multiple disabilities-are at higher risk than students without disabilities to engage in health compromising sexual health behavior and that students with multiple disabilities have higher adjusted prevalence ratios of being diagnosed and/or treated for a sexually transmitted infection. CONCLUSIONS: Students with disabilities are not a monolithic population and there is cross-disability variability of engaging in health compromising and health promoting behavior. These findings highlight the need for college health promotion specialists and clinicians to advocate for accessible, sex positive, disability inclusive sexual health education.

Preresolution Drinking Problem Severity Profiles Associated with Stable Moderation Outcomes of Natural Recovery Attempts.

BACKGROUND: Higher problem severity contraindicates moderation drinking in treatment samples, but has not been well investigated in natural recovery samples with more prevalent moderation outcomes, nor have single studies assessed multiple severity indicators. Therefore, we integrated 5 prospective studies of recent natural recovery attempts to identify multi-indicator profiles that distinguished moderation from abstinence or unstable resolution involving relapse. The study evaluated whether moderation was distinguished by a generalized lower severity profile or whether more complex profiles better differentiated outcomes. METHODS: Community-dwelling problem drinkers in the southeastern United States (N = 616, 67% male, 65% white, mean age = 46.5 years) enrolled soon after stopping alcohol misuse without treatment were followed prospectively for a year. Outcome predictors assessed at enrollment included preresolution drinking practices, alcohol-related problems, alcohol dependence, and a behavioral economic measure of the reward value of drinking based on preresolution spending on alcohol versus saving for the future. RESULTS: Latent profile analysis of severity indicators supported a 4-profile solution: (i) global low risk on all indicators, (ii) global high risk on all indicators, (iii) high risk limited to drinking practices only, and (iv) high risk limited to alcohol dependence and alcohol-related problems only. Outcomes differed by profile membership (p < 0.01). Multinomial logistic regression analyses showed that the global low risk and heavy drinking risk only profiles were associated with stable moderation during the 1-year follow-up. The high dependence and alcohol problems risk profile was associated with both abstinence and relapse during the follow-up (ps < 0.05). CONCLUSIONS: Consistent with prior research, moderation was associated with lower alcohol dependence, problems, and reward value. Participants who simply drank heavily and did not have elevated risk on other indicators also had a higher probability of moderation. Results support using multidimensional severity indicators that encompass functional variables in addition to drinking practices to predict outcomes.

Sexual Risk Factors and Human Immunodeficiency Virus Testing Intention Among At-Risk College Students Who Have Never Been Tested.

Survey data from a university in the southeast United States were used to estimate the relation between sexual risk factors, perceived susceptibility, and human immunodeficiency virus testing intention among sexually active college students who had never been tested. Sexual risk factors, but not knowledge, were indirectly related to increased human immunodeficiency virus testing intention through perceived susceptibility.

Integrating Transformative Considerations and Quantitative Results through a Participant Selection Joint Display in Explanatory Sequential Mixed Methods Studies.

Integrating philosophical or paradigmatic dimensions in mixed methods research studies facilitates the development of stronger meta-inferences. The transformative paradigm and the explanatory sequential mixed methods design share a focus on developing sampling criteria, but with different priorities. This article contributes to the field of mixed methods research by presenting a method of integrating transformative sampling considerations in explanatory sequential designs through a participant selection joint display. The approach presented addresses concerns regarding transparency of research decisions in mixed methods studies, while providing a method of centering the transformative paradigm in mixed methods integration procedures.

Self-Reported Accommodation Needs for Patients with Disabilities in Primary Care.

BACKGROUND: People with disabilities experience barriers to engaging with health care due to inaccessible social and physical environments at primary care clinics. Despite legal mandates, identification and provision of necessary accommodations for this population at primary care clinics are poor. The objective of this cross-sectional study was to assess patient-reported disability status and accommodation needs among patients at a primary care clinic. METHODS: An electronic health record-based Disability and Accommodations Questionnaire assessing disability status, types, and accommodation needs was developed by subject matter experts at Michigan Medicine and the University of Michigan Council for Disability Concerns. The questionnaire underwent multiple rounds of reviews and revisions before its use in clinical settings. A paper-based questionnaire was administered to all patients presenting for a wellness-based visit at an academic health system primary care clinic in southeast Michigan. Data were collected between March 2022 and August 2022. RESULTS: Approximately 13% of the 541 patients self-reported a disability, with 54.2% indicating at least one needed accommodation. The most commonly reported disabilities were mental health and hearing-related disabilities, by 4.8% and 4.6% of patients, respectively. The most frequently requested accommodations were communication- or language-based (for example, presence of an American Sign Language interpreter, assistive listening devices), cognitive-based (for example, inclusion of a support person with care decisions), and mobility-based (for example, assistance with transfers). CONCLUSION: The Disability and Accommodations Questionnaire helped identify the presence of a disability, its types, and any requested accommodations requested at a primary care health center.

Measuring Cannabis Reinforcement among Young Adults: A Mixed Methods Examination.

Introduction: Increasing reinforcement received from cannabis-free activities, relative to reinforcement from cannabis-related activities, is one way to reduce harmful cannabis use. Thus, accurate measurement of cannabis reinforcement is important. Using convergent mixed methods, we developed the Adolescent Reinforcement Survey Schedule-Cannabis Use Version (ARSS-CUV). ARSS-CUV, adapted from the alcohol use version, measures cannabis reinforcement by asking individuals how frequently they engaged in, and how much they enjoyed, different activities when using and not using cannabis. Method: Young adults (N = 65; M age = 20.4 years [SD = 1.8]) completed measures of cannabis use, the ARSS-CUV, and provided feedback on included activities, via focus groups. Following Standards for Educational and Psychological Testing framework, this study examined evidence of measurement validity based on item content. Results: Quantitative findings revealed that peer interactions were the most reinforcing activities, whereas activities related to family were least reinforcing. Qualitative findings indicated some confusion with question wording. Participants also indicated the importance of environmental context when using cannabis and noted who they use cannabis with may be more important than the activity they are doing. Changes were made to survey flow and response choices after participant feedback. Conclusions: ARSS-CUV includes revisions in activities solicited and response format. The revised ARSS-CUV provides opportunities to advance measurement of an important construct (i.e., reinforcement) in the study of cannabis use. Psychometric properties of the ARSS-CUV across different populations and contexts of use (e.g., polysubstance use) should be examined.

Cesarean birth and adverse birth outcomes among sub-populations of deaf and hard-of-hearing people.

BACKGROUND: Deaf and hard-of-hearing (DHH) people are at higher risk than their non-DHH counterparts of experiencing adverse birth outcomes. There is a lack of research focusing on social, linguistic, and medical factors related to being DHH which may identify groups of DHH people who experience more inequity. OBJECTIVE: Examine difference in prevalence of cesarean and adverse birth outcomes among diverse sub-groups of DHH people. METHODS: We conducted a cross-sectional survey of DHH birthing people in the U.S. who gave birth within the past 10 years. The sample was predominantly white, college educated, and married. We assessed cesarean birth and three adverse birth outcomes: preterm birth, low birthweight, and NICU admission post-delivery. DHH-specific variables were genetic etiology of hearing loss, preferred language (i.e., American Sign Language, English, or bilingual), severity of hearing loss, age of onset of hearing loss, and self-reported quality of perinatal care communication. We estimated prevalence, 95 % confidence intervals, and unadjusted prevalence ratios. RESULTS: Thirty-one percent of our sample reported a cesarean birth. Overall, there were no significant differences in prevalence across the outcome variables with respect to preferred language, genetic etiology, severity, and age of onset. Poorer perinatal care communication quality was associated with higher prevalence of preterm birth (PR = 2.37) and NICU admission (PR = 1.91). CONCLUSIONS: Our study found no evidence supporting differences in obstetric outcomes among DHH birthing people across medical factors related to deafness. Findings support the important role of communication access for DHH people in healthcare environments.

Frontline Providers' and Patients' Perspectives on Improving Diagnostic Safety in the Emergency Department: A Qualitative Study.

BACKGROUND: Few studies have described the insights of frontline health care providers and patients on how the diagnostic process can be improved in the emergency department (ED), a setting at high risk for diagnostic errors. The authors aimed to identify the perspectives of providers and patients on the diagnostic process and identify potential interventions to improve diagnostic safety. METHODS: Semistructured interviews were conducted with 10 ED physicians, 15 ED nurses, and 9 patients/caregivers at two separate health systems. Interview questions were guided by the ED-Adapted National Academies of Sciences, Engineering, and Medicine Diagnostic Process Framework and explored participant perspectives on the ED diagnostic process, identified vulnerabilities, and solicited interventions to improve diagnostic safety. The authors performed qualitative thematic analysis on transcribed interviews. RESULTS: The research team categorized vulnerabilities in the diagnostic process and intervention opportunities based on the ED-Adapted Framework into five domains: (1) team dynamics and communication (for example, suboptimal communication between referring physicians and the ED team); (2) information gathering related to patient presentation (for example, obtaining the history from the patients or their caregivers; (3) ED organization, system, and processes (for example, staff schedules and handoffs); (4) patient education and self-management (for example, patient education at discharge from the ED); and (5) electronic health record and patient portal use (for example, automatic release of test results into the patient portal). The authors identified 33 potential interventions, of which 17 were provider focused and 16 were patient focused. CONCLUSION: Frontline providers and patients identified several vulnerabilities and potential interventions to improve ED diagnostic safety. Refining, implementing, and evaluating the efficacy of these interventions are required.

Parents' and professionals' perspectives on school-based maltreatment prevention education for children with intellectual and developmental disabilities.

BACKGROUND: Youth with intellectual and developmental disabilities (IDD) are at a significantly increased risk of experiencing maltreatment and abuse. Child maltreatment prevention education programs are effective at improving safety of children and youth, generally. OBJECTIVE: The goal of this study was to understand challenges, benefits, and important considerations of developing an IDD-tailored prevention program. PARTICIPANTS AND SETTING: In total, we recruited 21 professionals and parents who have experience with a child with IDD from New York, Indiana, and Florida. METHODS: Participants were segmented into three focus groups, which were conducted through web-based videoconferencing. Focus groups were moderated by experts in child maltreatment prevention and recorded for data collection. Recordings were transcribed and subsequently coded using a qualitative content analysis approach. RESULTS: The analysis identified several challenges to implementing child maltreatment prevention to students with IDD and pedagogical strategies to overcome those, such as the use of visuals, standardized vocabulary, and relatable examples. Benefits of a prevention program were also mentioned, including feelings of empowerment that can be cultivated by providing opportunities where children with IDD practice being assertive. Considerations for program developers and staff were discussed to ensure that prevention programs are easily adaptable to suit the needs of students with IDD across the continuum. CONCLUSIONS: Previous research has indicated an unmet need for child maltreatment programs among children with IDD. Implementation of an IDD-tailored program must be preceded by gaining invaluable insight from professionals and parents. Findings provide insight into implementation challenges and methods to inform prevention programs.

Model Clinic to Increase Preventive Screenings Among Patients With Physical Disabilities: Protocol for a Mixed Methods Intervention Pilot Study.

BACKGROUND: People with physical disabilities often experience premature multimorbidity and adverse health events. A tailored primary care approach for this vulnerable population that also accounts for social and functional risk factors could promote healthier aging and more equitable health care. OBJECTIVE: This project will evaluate the implementation of a health program designed for people with physical disabilities. The proposed evaluation result is to generate the first best-practice protocol focused specifically on developing primary care to help reduce preventable causes of morbidity and improve functioning among people with physical disabilities. METHODS: We will design and implement a pilot health program for people with physical disabilities at a primary care clinic within Michigan Medicine. The health program for people with physical disabilities will be an integrated intervention involving a tailored best practice alert designed to prompt family medicine providers to screen and monitor for common, preventable health conditions. The program will also collect social and functional status information to determine the patient's need for further care coordination and support. Adult participants from this clinic with identified physical disabilities will be targeted for potential enrollment. To create a quasi-experimental setting, a separate departmental clinic will serve as a control site for comparison purposes. A quantitative analysis to estimate the treatment effect of implementing this health program will be conducted using a difference-in-differences approach. Outcomes of interest will include the use of preventative services (eg, hemoglobin A1c for diabetes screening), social work assistance, and emergency and hospital services. These data will be extracted from electronic health records. Time-invariant covariates, particularly sociodemographic covariates, will be included in the models. A qualitative analysis of patient and health care provider interviews will also be completed to assess the effect of the health program. Patient Health Questionnaire-9 and Generalized Anxiety Disorder 7-item scores will be assessed to both screen for depression and anxiety as well as explore program impacts related to addressing health and functioning needs related to physical disabilities in a primary care setting. These will be summarized through descriptive analyses. RESULTS: This study was funded in September 2018, data collection started in September 2021, and data collection is expected to be concluded in September 2023. CONCLUSIONS: This study is a mixed methods evaluation of the effectiveness of an integrated health program designed for people with physical disabilities, based on a quasi-experimental comparison between an intervention and a control clinic site. The intervention will be considered successful if it leads to improvements in greater use of screening and monitoring for preventable health conditions, increased social worker referrals to assist with health and functioning needs, and improvements in emergency and hospital-based services. The findings will help inform best practices for people with physical disabilities in a primary care setting. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/50105.

"There is No Communication": A Qualitative Examination of Deaf Signers' Experiences With Advance Care Planning.

Objective(s): Deaf American Sign Language (ASL) users are subject to health care disparities resulting from communication and language barriers. Currently, few resources on advance care planning and end-of-life care exist in ASL. This study explores Deaf ASL users' perceptions and experiences with end-of-life care and advance care planning. Methods: Semi-structured 1:1 interviews with Deaf signers were translated, and transcribed into English by a bilingual researcher. Investigators inductively coded transcripts and identified themes of barriers, facilitators, knowledge, and sources of information regarding end-of-life care. Participants' knowledge of advance care planning and completion of advance care planning documents were evaluated using a brief assessment. Results: Eleven Deaf ASL users participated in the study with two deaf interviewers. Participants reported barriers to end-of-life care including poor provider communication, inaccessible sources, and inadequate provision of accommodations, leading to patient distrust. Participants' understanding of advance care planning was facilitated by accessible forms of communication and their social networks, such as family, friends, and Deaf peers. Participants primarily gained information on end-of-life care from first-hand familial experience, peers, and media. Participants' mean advance care planning knowledge was 4.6 out of 15 (SD = 2.6). Conclusions: Deaf ASL users face scarce accessible resources around end-of-life care, lowering their ability to understand and proceed with advance care planning. Implementation of ASL accessible advance care planning educational tools in health care settings is needed.

Healthcare communication access among deaf and hard-of-hearing people during pregnancy.

OBJECTIVE: Deaf and hard-of-hearing (DHH) people report ineffective healthcare communication. Limited research has been conducted on healthcare communication during pregnancy. This study's aim was to assess communication accommodations and experiences during pregnancy for DHH people. METHODS: An accessible web-based survey was administered to a non-probability sample of DHH people through national organizations, social media, and snowball sampling. Eligibility criteria included being 21 years or older; given birth in the U.S. within the past 10 years, report hearing loss prior to the most recent birth. Questions focused on healthcare experiences and information access during their last pregnancy. The sample included 583 respondents for the present analysis. We describe the communication accommodations requested and received during pregnancy, segmented by preferred language. RESULTS: Most DHH participants reported communication with prenatal clinicians as "good" or "very good". On-site interpreter services were most commonly requested by American Sign Language (ASL) only and bilingual DHH people. Interpersonal communication modification requests (e.g., speaking louder) were rarely obliged. CONCLUSION: This study is the first national examination of requested and received communication accommodations for DHH patients during the perinatal period. PRACTICE IMPLICATIONS: Healthcare providers should work closely with patients to ensure effective communication access is provided.

The International Classification of Functioning, Disability and Health Core Set for deafblindness. Part I: a systematic review of outcome measures.

INTRODUCTION: The International Classification of Functioning, Disability, and Health (ICF), developed by the World Health Organization, is a classification framework that focuses on the health and functioning of people with disabilities. As part of an ICF Core Set development, four studies need to be conducted, one of which is a systematic review. This study presents part 1 of the systematic review that aims to describe the outcome measures identified in the literature related to functioning in individuals with deafblindness. EVIDENCE ACQUISITION: The research team screened articles from eight scientific databases, three journals, and Google Scholar (March 2011 to September 2022). Articles were included if they studied individuals with deafblindness aged 18 and older. Studies that examined genetics or laboratory experiments involving animals were excluded. Data were extracted into a logbook with key descriptors such as study location and design, age of study population, and instruments/outcome measures used, which were further categorized into one of the following types: 1) standardized; 2) patient-reported measures, standardized (PT-S); 3) patient-reported measures, not standardized (PT-not S); 4) health professional, reported measures, standardized (HP-S); 5) Technical measures; 6) other measures (parent-reported standardized and laboratory measures). EVIDENCE SYNTHESIS: The review included 147 studies, of which most were conducted in Europe (47.6%) and North America (27.9%). Of the 314 identified outcome measures, 57 were Standardized, 59 were Patient Reported-Standardized (PT-S), 178 were patient reported non-standardized (PT-Not S) variables, 11 were health professional reported, standardized, five were technical, and four were classified as other measures. CONCLUSIONS: Most instruments measured functioning in daily activities and the mental health of individuals with deafblindness. Three deafblind-specific instruments were identified in this study, highlighting the need for more deafblind-specific instruments to be developed and utilized in research.