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Background: Collecting self-reported health and quality of life (QoL) outcomes is increasingly considered best practice, but people with intellectual and developmental disabilities (IDD) are often excluded from patient-reported outcome measures.Objective: This article provides a literature-informed overview of the state of the field of self-reporting of physical health and QoL in research with adults with IDD.Approach: We first identified and synthesized definitions of key constructs related to the self-reporting of health. Next, we summarize literature on existing and emerging practices focused on health and QoL assessment, discussing the frequent and sometimes overly broad use of proxy-respondents in the IDD field. We then highlight emerging directions focused on cognitive accessibility and universal design. Finally, we provide conclusions and recommendations for the field.Conclusions: Informed by the literature, we provide action steps to guide the field in considering how to incorporate self-reporting of health outcomes by people with IDD in research, policy, and practice.

Background: Mental health conditions are common among individuals with intellectual disability. Under recognition of mental health disorders leading to unmet treatment needs is common in this population. This article addresses one major contributing factor, the lack of cognitively accessible self-report measures for individuals with intellectual disability.Method: In this literature-informed overview of the state of the field, we discuss the need for, and complexities of, including individuals with intellectual disability in mental health assessments.Results: With appropriate supports, many individuals with intellectual disability can respond to mental health questions. We discuss evidence-based strategies to make mental health assessments more accessible. Conclusion:We highlight the need to engage individuals with intellectual disability to provide first-hand information about their health and well-being. New instruments and research procedures should be developed in partnership with individuals with intellectual disability. Self-report may be essential to advancing the science of mental health research.

The value of practice and treatment guidelines in improving mental health care is well established; however, no such guidelines exist for the mental health treatment of adults with intellectual disability. An essential step in the composition of guidelines is broad and careful consideration of the relevant empirical literature. The purpose of this systematic review was to identify efficacious and effective treatment practices for individuals with intellectual disability and co-occurring psychiatric disorders. The search across three databases (PubMed, PsycINFO, Embase) resulted in 37 studies that met inclusion criteria. The methodological rigor and study designs were evaluated to identify research gaps. The methodological strength of each study was rated on four indicators, participant characterization, intervention description, outcome measures, and statistical analyses. Only 13.5% of the studies reviewed were randomized controlled trials; 54.1% were quasi-experimental (either with pre/post interventions or use of non-randomized waitlist control, and 24.3% used some type of case series design. The majority of studies were from a cognitive behavioral orientation. While studies varied in scientific rigor, no one study was rated highly on all four indicators. Implications for future research and practice are discussed. Public Health Significance StatementSignificant barriers to mental health treatment for adults with ID continue to persist. Contributing to this is clinicians' reported lack of training, resources, and knowledge to serve individuals with ID. In order to address this, it is imperative that clinicians and researchers are aware of the state of research in this area, both its advancement over the past 20 years as well as the persisting gaps. This systematic review updates the current state of the literature, paying particular attention to the advancements in use of outcome measures and manualized treatments and the persist challenges related to diagnostic assessment and sample characterization.

Mental disorders in adults with intellectual disability (ID) occur at rates much higher than in those without ID; however, many clinicians report little to no training in providing clinical services to this population. Due to the historically qualitative nature of the most literature in this field, it has been difficult for clinicians to identify appropriate accommodations and assessments to make treatment more accessible to those with ID. The objective of this scoping review was to identify psychotherapy practices for adults with ID in the areas of treatment accommodations and outcome measures/treatment monitoring tools. In the absence of treatment guidelines for this population, practices were drawn from treatment outcome research. Research reports describing treatment for this population were examined to identify the types of accommodations and practices employed by clinical research scientists when delivering psychotherapy. Specific practices, accommodations and tools are suggested based on the available research. The most common type of intervention was cognitive behavior therapy (i.e., 48.1%). Key aspects of accommodations to treatment included incorporating self-determination, the use of simplified language, visual supports, involving caregivers, and teaching prerequisite skills. This review details the accommodations and provides some practical suggestions and resources for clinicians when providing psychotherapy to adults with ID.