Piloting the Use of Global Health Measures in a Down Syndrome Clinic

Autor/inn/en	Santoro, Stephanie L.; Campbell, Ashlee; Cottrell, Clorinda; Donelan, Karen; Majewski, Ben; Oreskovic, Nicolas M.; Patsiogiannis, Vasiliki; Torres, Amy; Skotko, Brian G.
Titel	Piloting the Use of Global Health Measures in a Down Syndrome Clinic
Quelle	In: Journal of Applied Research in Intellectual Disabilities, 34 (2021) 4, S.1108-1117 (10 Seiten)Infoseite zur Zeitschrift PDF als Volltext Verfügbarkeit
Zusatzinformation	ORCID (Santoro, Stephanie L.) ORCID (Oreskovic, Nicolas M.)
Sprache	englisch
Dokumenttyp	gedruckt; online; Zeitschriftenaufsatz
ISSN	1360-2322
DOI	10.1111/jar.12866
Schlagwörter	Down Syndrome; Adolescents; Adults; Caregivers; Health; Scores; Measures (Individuals); Patients + Suchen Sie Ihr Suchwort? 'Downs Syndrome; Down''s Syndrome'; Down-Syndrom; Adolescent; Adolescence; Adoleszenz; Jugend; Jugendalter; Jugendlicher; Caregiver; Carer; Betreuungsperson; Pfleger; Gesundheit; Messdaten; Patient
Abstract	Purpose: People with Down syndrome (DS) have a unique medical profile which may impact views of health. We aimed to explore the use of global health measures in DS. Methods: Prospective survey in the Mass General Hospital Down Syndrome Program (MGH DSP) from December 2018 to July 2019 with Patient Reported Outcomes Measurement Information System (PROMIS)® instruments of global health. Analyses included use of scoring manuals, descriptive statistics and dependent samples t test. Results: Seventeen adolescents, 48 adults with DS and 88 caregivers returned surveys; 137 were complete. Incomplete responses and notes showed limitations of the instruments in this population. Global health T-scores did not differ from the available comparative standardized scores to these measures from PROMIS® reference population (p > 0.05). Conclusions: In the MGH DSP, pilot global health instruments were completed by some adults with DS and caregivers, with some limitations and scores similar to the PROMIS® reference population. (As Provided).
Anmerkungen	Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www.wiley.com/en-us
Erfasst von	ERIC (Education Resources Information Center), Washington, DC
Update	2024/1/01