TY - JOUR
T1 - A brief quality-of-life measure for ALS clinical trials based on a subset of items from the sickness impact profile
AU - McGuire, Dawn
AU - Garrison, Louis
AU - Armon, Carmel
AU - Barohn, Richard J.
AU - Bryan, Wilson W.
AU - Miller, Robert
AU - Parry, Gareth J.
AU - Petajan, Jack H.
AU - Ross, Mark A.
PY - 1997/10/1
Y1 - 1997/10/1
N2 - We previously demonstrated a significant relationship (P<0.0001) between maximum voluntary isometric contraction (MVC) plus pulmonary function scores (the Tufts Quantitative Neuromuscular Exam Combination Megascore (TQNE CM)), and the Sickness Impact Profile (SIP) in a cohort of 524 ALS patients. Because the 136-item SIP questionnaire can be difficult to administer in this population, we examined SIP subscales and clinically derived item sets in relation to the TQNE CM in an effort to define a briefer measure of quality of life for use in clinical trials. Two 'Mini-SIP' indices performed as well as the overall SIP in reflecting the impact of muscle weakness on ALS patients' quality of life: a combination of two SIP subscales ('SIP-33'), and a 19-item set of questions independently chosen by a panel of ALS specialists ('SIP/ALS-19'). Either index potentially could be useful in ALS clinical trials. The SIP/ALS-19 is currently being used in a National ALS data base, providing an opportunity to evaluate its utility prospectively against other QOL measures in ALS patients.
AB - We previously demonstrated a significant relationship (P<0.0001) between maximum voluntary isometric contraction (MVC) plus pulmonary function scores (the Tufts Quantitative Neuromuscular Exam Combination Megascore (TQNE CM)), and the Sickness Impact Profile (SIP) in a cohort of 524 ALS patients. Because the 136-item SIP questionnaire can be difficult to administer in this population, we examined SIP subscales and clinically derived item sets in relation to the TQNE CM in an effort to define a briefer measure of quality of life for use in clinical trials. Two 'Mini-SIP' indices performed as well as the overall SIP in reflecting the impact of muscle weakness on ALS patients' quality of life: a combination of two SIP subscales ('SIP-33'), and a 19-item set of questions independently chosen by a panel of ALS specialists ('SIP/ALS-19'). Either index potentially could be useful in ALS clinical trials. The SIP/ALS-19 is currently being used in a National ALS data base, providing an opportunity to evaluate its utility prospectively against other QOL measures in ALS patients.
KW - ALS
KW - Clinical trial outcomes measures
KW - Quality of life measures
KW - Sickness impact profile
KW - TQNE
UR - http://www.scopus.com/inward/record.url?scp=0030666284&partnerID=8YFLogxK
U2 - 10.1016/S0022-510X(97)00239-6
DO - 10.1016/S0022-510X(97)00239-6
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C2 - 9419049
AN - SCOPUS:0030666284
VL - 152
SP - S18-S22
JO - Journal of the Neurological Sciences
JF - Journal of the Neurological Sciences
SN - 0022-510X
IS - SUPPL. 1
ER -