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 journalArticle

44 Citations (Scopus)

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 languageEnglish (US)
JournalJournal of the Neurological Sciences
Volume152
Issue numberSUPPL. 1
DOIs
StatePublished - Oct 1 1997
Externally publishedYes

Fingerprint

Sickness Impact Profile
Quality of Life
Clinical Trials
Isometric Contraction
Muscle Weakness
Databases

Keywords

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

ASJC Scopus subject areas

  • Aging
  • Clinical Neurology
  • Surgery
  • Developmental Neuroscience
  • Neurology
  • Neuroscience(all)

Cite this

A brief quality-of-life measure for ALS clinical trials based on a subset of items from the sickness impact profile. / McGuire, Dawn; Garrison, Louis; Armon, Carmel; Barohn, Richard J.; Bryan, Wilson W.; Miller, Robert; Parry, Gareth J.; Petajan, Jack H.; Ross, Mark A.

In: Journal of the Neurological Sciences, Vol. 152, No. SUPPL. 1, 01.10.1997.

Research output: Contribution to journalArticle

McGuire, Dawn ; Garrison, Louis ; Armon, Carmel ; Barohn, Richard J. ; Bryan, Wilson W. ; Miller, Robert ; Parry, Gareth J. ; Petajan, Jack H. ; Ross, Mark A. / A brief quality-of-life measure for ALS clinical trials based on a subset of items from the sickness impact profile. In: Journal of the Neurological Sciences. 1997 ; Vol. 152, No. SUPPL. 1.
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