A brief quality-of-life measure for ALS clinical trials based on a subset of items from the sickness impact profile

Dawn McGuire; Louis Garrison; Carmel Armon; Richard J. Barohn; Wilson W. Bryan; Robert Miller; Gareth J. Parry; Jack H. Petajan; Mark A. Ross

doi:10.1016/S0022-510X(97)00239-6

A brief quality-of-life measure for ALS clinical trials based on a subset of items from the sickness impact profile

Dawn McGuire, Louis Garrison, Carmel Armon, Richard J. Barohn, Wilson W. Bryan, Robert Miller, Gareth J. Parry, Jack H. Petajan, Mark A. Ross

Research output: Contribution to journal › Article › peer-review

47 Scopus citations

Abstract

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.

Original language	English (US)
Pages (from-to)	S18-S22
Journal	Journal of the Neurological Sciences
Volume	152
Issue number	SUPPL. 1
DOIs	https://doi.org/10.1016/S0022-510X(97)00239-6
State	Published - Oct 1 1997
Externally published	Yes

Keywords

ALS
Clinical trial outcomes measures
Quality of life measures
Sickness impact profile
TQNE

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10.1016/S0022-510X(97)00239-6

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title = "A brief quality-of-life measure for ALS clinical trials based on a subset of items from the sickness impact profile",

abstract = "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.",

keywords = "ALS, Clinical trial outcomes measures, Quality of life measures, Sickness impact profile, TQNE",

author = "Dawn McGuire and Louis Garrison and Carmel Armon and Barohn, {Richard J.} and Bryan, {Wilson W.} and Robert Miller and Parry, {Gareth J.} and Petajan, {Jack H.} and Ross, {Mark A.}",

year = "1997",

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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

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ER -

A brief quality-of-life measure for ALS clinical trials based on a subset of items from the sickness impact profile

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