Measurement Properties of Self-Report Questionnaires for Amyotrophic Lateral Sclerosis: A Systematic Review and Meta-Analysis of Commonly Used Instruments

Maria Jose Sanchez-Andrades, Maria Jesus Vinolo-Gil, María Jesús Casuso-Holgado, Javier Barón-López, Manuel Rodríguez-Huguet and Rocío Martín-Valero ()
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Maria Jose Sanchez-Andrades: Department of Physiotherapy, Faculty of Health Science, Ampliacion de Campus de Teatinos, University of Malaga, C/Arquitecto Francisco Peñalosa 3, 29071 Malaga, Spain
Maria Jesus Vinolo-Gil: Department of Nursing and Physiotherapy, Faculty of Nursing and Physiotherapy, University of Cadiz, 11009 Cadiz, Spain
María Jesús Casuso-Holgado: Department of Physiotherapy, Faculty of Nursing, Physiotherapy and Podiatry, University of Seville, 41009 Seville, Spain
Javier Barón-López: Department of Physiotherapy, Faculty of Health Science, Ampliacion de Campus de Teatinos, University of Malaga, C/Arquitecto Francisco Peñalosa 3, 29071 Malaga, Spain
Manuel Rodríguez-Huguet: Department of Nursing and Physiotherapy, Faculty of Nursing and Physiotherapy, University of Cadiz, 11009 Cadiz, Spain
Rocío Martín-Valero: Department of Physiotherapy, Faculty of Health Science, Ampliacion de Campus de Teatinos, University of Malaga, C/Arquitecto Francisco Peñalosa 3, 29071 Malaga, Spain

IJERPH, 2023, vol. 20, issue 4, 1-19

Abstract: (1) Background: Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease. There is no evidence on the analysis of the measurement instruments available to assess quality of life in these patients, following the consensus-based standards for the selection of health measurement instruments (COSMIN) checklist; (2) Methods: A systematic review was performed in PubMed, Embase, PEDro, Web of Science and Cochrane. The psychometric properties of the questionnaires were determined by using the COSMIN checklist. Two searches were carried out. This systematic review was registered in PROSPERO (CRD42021249005); (3) Results: There were four published articles that analysed the measurement properties in patients with ALS for the following scales: Amyotrophic Lateral Sclerosis Assessment Questionnaire 40, Amyotrophic Lateral Sclerosis-Specific Quality of Life Questionnaire, Short Form 36 Healthy Survey, Epworth Sleepiness Scale and Sickness Impact Profile. Another five scales also met the inclusion criteria: ALS-Depression-Inventory, State Trait Anxiety-Inventory, World Health Organization Quality of Life, Schedule for the Evaluation of Individual Quality of Life, Amyotrophic Lateral Sclerosis Assessment Questionnaire 5. Most Patient Reported Outcome Measures (PROMs) present a low-quality synthesis of evidence. It was observed an excellent pooled reliability of 0.92 (95% Confidence Interval: 0.83–0.96, I 2 = 87.3%) for four dimensions for questionnaires ALSAQ-40. (4) Conclusions: There is little evidence on generic instruments. Future studies are necessary to develop new tools.

Keywords: quality of life; amyotrophic lateral sclerosis; design questionnaire; validation studies; patient reported outcome measures; systematic review (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2023
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