title: The ALSSQOL: balancing physical and nonphysical factors in assessing quality of life in ALS.
abstract: BACKGROUND
  There is no generally accepted instrument for measuring quality of life (QOL) in patients with ALS. Current instruments are either too heavily weighted toward strength and physical function or useful for the evaluation of individuals but of less utility in assessing large samples.
  
  
  OBJECTIVE
  To develop and evaluate the psychometric properties of an ALS-specific QOL instrument (the ALSSQOL) that would reflect overall QOL as assessed by the patient and would be valid and reliable across large samples.
  
  
  METHODS
  The ALSSQOL is based on the McGill Quality of Life Questionnaire (MQOL), modified by changes in format and by adding questions on religiousness and spirituality, items derived from interviews with ALS patients, and items identified from open-ended questions administered during the MQOL. The psychometric properties of the ALSSQOL were assessed by a prospective multicenter study in which participants completed the ALSSQOL, other instruments measuring overall QOL, and instruments assessing religiousness, spirituality, and psychological distress.
  
  
  RESULTS
  A 59-item ALSSQOL was developed; 342 patients evaluated its psychometric properties. Completion time averaged 15 minutes. Forty-six items loaded on six factors. The ALSSQOL demonstrated concurrent, convergent, and discriminant validity for the overall instrument and convergent validity for its subscales. Analysis of individual items permitted insight into variables of clinical importance.
  
  
  CONCLUSIONS
  This new ALS-specific quality of life instrument is a practical tool for the assessment of overall quality of life in individuals with ALS and appears to be valid and useful across large samples. Validation studies of a shortened version are now under way.
authors.affiliation: Department of Neurology, Penn State College of Medicine, Hershey, PA 17033, USA. zsimmons@psu.edu
authors.forename: Z
authors.initials: Z
authors.lastname: Simmons
authors.forename: S H
authors.initials: SH
authors.lastname: Felgoise
authors.forename: B A
authors.initials: BA
authors.lastname: Bremer
authors.forename: S M
authors.initials: SM
authors.lastname: Walsh
authors.forename: D J
authors.initials: DJ
authors.lastname: Hufford
authors.forename: M B
authors.initials: MB
authors.lastname: Bromberg
authors.forename: W
authors.initials: W
authors.lastname: David
authors.forename: D A
authors.initials: DA
authors.lastname: Forshew
authors.forename: T D
authors.initials: TD
authors.lastname: Heiman-Patterson
authors.forename: E C
authors.initials: EC
authors.lastname: Lai
authors.forename: L
authors.initials: L
authors.lastname: McCluskey
mesh_terms: D000275:Adjustment Disorders / Q000175:diagnosis / Q000209:etiology; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D000690:Amyotrophic Lateral Sclerosis / Q000175:diagnosis* / Q000503:physiopathology / Q000523:psychology*; D001007:Anxiety / Q000175:diagnosis / Q000209:etiology; D004185:Disability Evaluation; D018450:Disease Progression; D005260:Female; D006801:Humans; D008297:Male; D008393:Marriage; D001523:Mental Disorders / Q000175:diagnosis* / Q000209:etiology; D008875:Middle Aged; D011237:Predictive Value of Tests; D011788:Quality of Life / Q000523:psychology*; D015203:Reproducibility of Results; D012944:Social Support; D013315:Stress, Psychological / Q000175:diagnosis / Q000209:etiology; D011795:Surveys and Questionnaires / Q000592:standards*