State of the Field: The Need for <scp>Self‐Report</scp> Measures of Health and Quality of Life for People With Intellectual and Developmental Disabilities

Shogren, Karrie A.; Bonardi, Alexandra; Cobranchi, Chelsea; Krahn, Gloria L.; Murray, Alexa; Robinson, Ann C.; Havercamp, Susan M.

doi:10.1111/jppi.12386

Cited by 24 publications

(10 citation statements)

References 64 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…In contrast, little attention has been paid to whether this applies to adults with DS. Evidence from existing studies encourages self-reported QoL from people with DS and should be considered a priority for assessing their QoL [ 34 – 36 ]. There are recognised methods for self-reporting QoL by people with DS, such as reliable and valid, easy-to-understand measurement scales [ 36 , 37 ], semi-structured interviews [ 38 ], and image-based methods [ 39 ].…”

Section: Introductionmentioning

confidence: 99%

Quality of life in adults with Down syndrome: A mixed methods systematic review

et al. 2023

View full text Add to dashboard Cite

Background As the life expectancy of adults (aged ≥ 18 years) with Down syndrome increases for a plethora of reasons including recognition of rights, access, and technological and medical advances, there is a need to collate evidence about their quality of life. Objective Using Schalock and Verdugo’s multidimensional quality of life assessment model, this systematic review aimed to identify, synthesise and integrate the quantitative and qualitative evidence on quality of life in adults with Down syndrome via self-and proxy-reporting. Methods Five databases were systematically searched: MEDLINE, CINAHL, PsycINFO, Scopus, and Web of Science to identify relevant articles published between 1980 and 2022 along with grey literature and reference lists from relevant studies. A mixed methods systematic review was performed according to the Joanna Briggs Institute methodology using the convergent integrated approach. The review followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Results Thirty-nine studies were included: 20 quantitative, 17 qualitative, and 2 mixed methods studies. The synthesised findings were grouped into the 8 core domains of quality of life: personal development, self-determination, interpersonal relations, social inclusion, rights, emotional, physical and material well-being. Of the 39 studies, 30 (76.92%) reported on emotional well-being and 10 (25.64%) on rights. Only 7 (17.94%) studies reported that adults with Down syndrome have a good quality of life centred around self-determination and interpersonal relations. Most adults with Down syndrome wanted to become more independent, have relationships, participate in the community, and exercise their human rights. Self-reported quality of life from adults with Down syndrome was rated higher than proxy reported quality of life. Discrepancies in quality of life instruments were discovered. Conclusion This review highlighted the need for a better systematic approach to improving the quality of life in adults with Down syndrome in targeted areas. Future research is required to evaluate self-and proxy-reporting methods and culture-specific quality of life instruments that are more appropriate for adults with Down syndrome. In addition, further studies should consider including digital assistive technologies to obtain self-reported quality of life data in adults with Down syndrome. International prospective register of systematic reviews registration number CRD42019140056.

show abstract

Section: Introductionmentioning

confidence: 99%

Quality of life in adults with Down syndrome: A mixed methods systematic review

et al. 2023

View full text Add to dashboard Cite

show abstract

“…This has direct implications for use of proxy‐reporting on health information for persons with IDD. Surveillance development needs to support autonomy by maximizing opportunities for persons with IDD to self‐report on surveys (Shogren et al, 2021). These differences exemplify the need to view people with IDD as “first among equals” when discussing their health and need for data.…”

Section: Discussionmentioning

confidence: 99%

What are the priorities for health data for adults with intellectual and developmental disabilities? It varies by whom you ask

Krahn,

Cargill‐Willis,

Raymond

et al. 2023

Policy Practice Intel Disabi

Self Cite

View full text Add to dashboard Cite

Numerous countries have recognized the need for improved surveillance data on the health of persons with intellectual and developmental disabilities (IDD). Federal agencies need additional information about the prevalence and health of persons with IDD to guide decisions about policies and programs. Without such data, health inequities and health needs of people with IDD can go unrecognized and be ignored, and resources may be misdirected. The priority areas for needed information, however, have not been well documented. To determine priorities for health data for persons with IDD, we conducted focus groups with three types of stakeholders from around the United States: researchers/practitioners, adults with IDD, and family members. Focus group dialogue was coded for themes and compared across stakeholder categories. Themes common to all groups included valuing people with IDD and respecting their self‐determination; affirming the need for data including longitudinal data; holding a holistic view of physical, mental, social, and sexual health; and access to quality health care, medications, and assistive equipment. Each group also contributed unique ideas such as importance of trust for disclosure of private information, stereotypes and discrimination, and social influences on health. Stakeholders identified specific health conditions to monitor, including COVID‐19. Findings have implications for establishing a health surveillance data system and for practice more generally. Health needs to be considered holistically, including physical, mental, social, and sexual health. A data framework needs to extend beyond a cross‐sectional comparative framework to include longitudinal tracking and monitoring conditions unique to persons with IDD. People with IDD may not trust nor disclose sensitive information about their disability and health to support persons and surveyors, which has implications for under‐reporting of prevalence of IDD and validity of proxy‐reporting. Input from multiple stakeholders is fundamental to developing a usable and relevant data collection system.

show abstract

“…One review of self-reported quality-of-life inventories among individuals with psychosis found that many measures were vague and had little evidence of psychometric quality [64]. Research concerning accessible assessment of PROs among populations that may struggle with attention, memory, or executive dysfunction suggests adapting design features to reduce assessment burden, such as giving specific examples or extra direction during administration, using visual aids where appropriate, or reducing cognitive demands by laying out measures in ways that reduce the need to visually scan and shift attention during administration [65,66]. Especially in populations where cognitive difficulties are common, care should be taken to ensure that participants adequately understand questionnaire items and that the layout, instructions, and response options of the measure are not overly burdensome.…”

Section: Recommendations For Eliciting Subjective Informationmentioning

confidence: 99%

The Discrepancy between Subjective and Objective Evaluations of Cognitive and Functional Ability among People with Schizophrenia: A Systematic Review

Harris,

Blanco,

Howie

et al. 2023

Behavioral Sciences

View full text Add to dashboard Cite

Background: An important aspect of recovery in schizophrenia relates to one’s subjective, lived experience. Self-report is a subjective measurement method with yet-uncertain utility in the assessment of functioning among individuals diagnosed with schizophrenia-spectrum disorder. No review to date has comprehensively synthesized existing research to evaluate the degree of correspondence, or lack thereof, between subjective and objective assessments of cognitive and everyday functioning, nor how extant data can inform the use of self-reported information in treatment and research. Methods: A systematic review was completed to provide a broad perspective of the literature on this topic. Relevant manuscripts were identified via a search strategy using key terms in PubMed and PsycINFO and a review of manuscript bibliographies. Twenty-six studies met the inclusion criteria. Results: These studies show minimal to modest associations between subjective assessments of cognition and everyday functioning and objective assessments of these domains, including informant reports and neuropsychological and behavioral measures. Individuals with schizophrenia appear to overestimate their functioning when compared to objective measures. Depression and greater cognitive ability tend to predict greater correspondence between subjective and objective assessments of cognition and everyday functioning. Discussion: This review discusses how we might understand the low correspondence between subjective and objective measures of functioning and provides recommendations for using and eliciting self-reported information in the pursuit of recovery-centered practices.

show abstract

State of the Field: The Need for Self‐Report Measures of Health and Quality of Life for People With Intellectual and Developmental Disabilities

Cited by 24 publications

References 64 publications

Quality of life in adults with Down syndrome: A mixed methods systematic review

Quality of life in adults with Down syndrome: A mixed methods systematic review

What are the priorities for health data for adults with intellectual and developmental disabilities? It varies by whom you ask

The Discrepancy between Subjective and Objective Evaluations of Cognitive and Functional Ability among People with Schizophrenia: A Systematic Review

Contact Info

Product

Resources

About