Literature DB >> 22861136

Self-reported health of people with intellectual disability.

Glenn T Fujiura1.   

Abstract

Self-reported health is an important outcome in the evaluation of health care but is largely ignored in favor of proxy-based reporting for people with an intellectual disability. This study briefly reviews the role of self-report in health assessment of people with intellectual disability and the challenges and recommendations that have emerged from the considerable body of research on interviewing and self-report. Limitations in current recommendations are addressed from the perspective of the cognition of self-report. The review describes conceptual directions for the reconciliation of the two contradictory themes in the treatment of self-report: the centrality given to personal perceptions and choices and the methodological concerns over the meaningfulness and validity of the self-reporting process.

Entities:  

Mesh:

Year:  2012        PMID: 22861136     DOI: 10.1352/1934-9556-50.4.352

Source DB:  PubMed          Journal:  Intellect Dev Disabil        ISSN: 1934-9491


  11 in total

Review 1.  Patient-reported outcome measures for young people with developmental disabilities: incorporation of design features to reduce cognitive demands.

Authors:  Ariel E Schwartz; Jessica M Kramer; Angela L Longo
Journal:  Dev Med Child Neurol       Date:  2017-11-24       Impact factor: 5.449

2.  Refining the Pediatric Evaluation of Disability Inventory-Patient-Reported Outcome (PEDI-PRO) item candidates: interpretation of a self-reported outcome measure of functional performance by young people with neurodevelopmental disabilities.

Authors:  Jessica M Kramer; Ariel Schwartz
Journal:  Dev Med Child Neurol       Date:  2017-06-05       Impact factor: 5.449

3.  Facilitating the inclusion of adults with intellectual disability as direct respondents in research: Strategies for fostering trust, respect, accessibility and engagement.

Authors:  Katherine E McDonald; Colleen Gibbons; Nicole Conroy; Robert S Olick
Journal:  J Appl Res Intellect Disabil       Date:  2021-09-24

4.  Paradigm shifts in disability and health: toward more ethical public health research.

Authors:  Katherine E McDonald; Dora M Raymaker
Journal:  Am J Public Health       Date:  2013-10-17       Impact factor: 9.308

5.  Inclusive approaches to developing content valid patient-reported outcome measure response scales for youth with intellectual/developmental disabilities.

Authors:  Ariel E Schwartz; Jessica M Kramer
Journal:  Br J Learn Disabil       Date:  2020-10-06

Review 6.  Exploring chronic disease prevalence in people with intellectual disabilities in primary care settings: A scoping review.

Authors:  Milou van den Bemd; Maarten Cuypers; Erik W M A Bischoff; Marloes Heutmekers; Bianca Schalk; Geraline L Leusink
Journal:  J Appl Res Intellect Disabil       Date:  2021-11-08

7.  Asthma in intellectual disability: are we managing our patients appropriately?

Authors:  Sharon Davis
Journal:  Breathe (Sheff)       Date:  2016-12

8.  Usability and Reliability of an Accessible Patient-Reported Outcome Measure (PROM) Software: The Pediatric Evaluation of Disability Inventory-Patient-Reported Outcome (PEDI-PRO).

Authors:  Jessica M Kramer; Ariel E Schwartz; Daniel K Davies; Steven E Stock; Pengsheng Ni
Journal:  Am J Occup Ther       Date:  2021 Jan-Feb

9.  Sexual knowledge and victimization in adults with autism spectrum disorders.

Authors:  S M Brown-Lavoie; M A Viecili; J A Weiss
Journal:  J Autism Dev Disord       Date:  2014-09

10.  Self-reported measures in health research for people with intellectual disabilities: an inclusive pilot study on suitability and reliability.

Authors:  Kristel Vlot-van Anrooij; Hilde Tobi; Thessa I M Hilgenkamp; Geraline L Leusink; Jenneken Naaldenberg
Journal:  BMC Med Res Methodol       Date:  2018-07-16       Impact factor: 4.615

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