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Piloting the use of global health measures in a Down syndrome clinic
Author(s) -
Santoro Stephanie L.,
Campbell Ashlee,
Cottrell Clorinda,
Donelan Karen,
Majewski Ben,
Oreskovic Nicolas M.,
Patsiogiannis Vasiliki,
Torres Amy,
Skotko Brian G.
Publication year - 2021
Publication title -
journal of applied research in intellectual disabilities
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.056
H-Index - 63
eISSN - 1468-3148
pISSN - 1360-2322
DOI - 10.1111/jar.12866
Subject(s) - psychology , physical medicine and rehabilitation , medicine
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.