TY - JOUR
T1 - The International Classification of Functioning, disability and health core set for deafblindness
T2 - Part I: a systematic review of outcome measures
AU - Paramasivam, Abinethaa
AU - Jaiswal, Atul
AU - Budhiraja, Shreya
AU - Holzhey, Peter
AU - Santhakumaran, Praveena
AU - Ogedengbe, Tosin
AU - Martin, Jana
AU - Das, Supriya
AU - Côté, Samuel
AU - Hassid, Romina
AU - James, Tyler G.
AU - Kennedy, Beth
AU - Tang, Diana
AU - Tran, Yvvone
AU - Colson-Osborne, Heather
AU - Li Chen Che, Muriel
AU - Minhas, Renu
AU - Granberg, Sarah
AU - Wittich, Walter
N1 - Copyright the Author(s) 2023. Version archived for private and non-commercial use with the permission of the author/s and according to publisher conditions. For further rights please contact the publisher.
PY - 2023/10
Y1 - 2023/10
N2 - 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.
AB - 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.
KW - International Classification of Functioning, Disability and Health
KW - Deaf-blind disorders
KW - Hearing disorders
KW - Vision disorders
KW - Disability evaluation
KW - Rehabilitation
UR - http://www.scopus.com/inward/record.url?scp=85176615768&partnerID=8YFLogxK
U2 - 10.23736/S1973-9087.23.07890-5
DO - 10.23736/S1973-9087.23.07890-5
M3 - Review article
C2 - 37458491
AN - SCOPUS:85176615768
SN - 1973-9087
VL - 59
SP - 615
EP - 627
JO - European Journal of Physical and Rehabilitation Medicine
JF - European Journal of Physical and Rehabilitation Medicine
IS - 5
ER -