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Assessing the psychometric properties of quality of life measures in individuals with amyotrophic lateral sclerosis: a systematic review

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Abstract

Purpose

Amyotrophic lateral sclerosis (ALS) is the most common motor neuron disease in adults. There are many patient-reported outcome measures (PROMs) for measuring quality of life (QoL) and health-related QoL (HRQoL) within this population; however, there is limited consensus regarding which are most valid, reliable, responsive, and interpretable. This systematic review assesses the psychometric properties and interpretability of QoL and HRQoL PROMs for individuals with ALS.

Methods

This review was conducted following the Consensus-based Standards for the selection of health Measurement Instruments (COSMIN) methodology for systematic reviews of PROMs. MEDLINE, EMBASE, and CINAHL databases were searched. Studies were included if their aim was to evaluate one or more psychometric properties or the interpretability of QoL or HRQoL PROMs in individuals with ALS.

Results

We screened 2713 abstracts, reviewed 60 full-text articles, and included 37 articles. Fifteen PROMs were evaluated including generic HRQoL (e.g., SF-36), ALS-specific HRQoL (e.g., ALSAQ-40), and individualized QoL (e.g., SEIQoL) measures. Evidence for internal consistency and test–retest reliability were acceptable. For convergent validity, 84% of hypotheses were met. For known-groups validity, outcomes were able to distinguish between healthy cohorts and other conditions. Responsiveness results ranged from low to high correlations with other measures over 3–24 months. Evidence for content validity, structural validity, measurement error, and divergent validity was limited.

Conclusion

This review identified evidence in support of the ALSAQ-40 or ALSAQ-5 for individuals with ALS. These findings can guide healthcare practitioners when selecting evidence-based QoL and HRQoL PROMs for patients and provide researchers with insight into gaps in the literature.

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All relevant data are presented in the manuscript and supplementary materials.

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Acknowledgements

We thank Rachel Couban, McMaster University’s Health Sciences librarian, for her assistance with the development of our search strategy.

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The authors declare that no funds, grants, or other support were received during the preparation of this manuscript.

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  1. Faryal Zahir and Alicia Hanman are first authors.

Authors and Affiliations

  1. School of Rehabilitation Science, McMaster University, 1400 Main St. W., IAHS, Hamilton, ON, L8S 1C7, Canada

    Faryal Zahir, Alicia Hanman, Nazmehr Yazdani, Sabrina La Rosa, Gemma Sleik, Brooke Sullivan, Ava Mehdipour, Selina Malouka & Ayse Kuspinar

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Contributions

FZ, AH, NY, SLR, GS, and BS conducted the research as students of the Master’s of Physiotherapy program at McMaster University, under the supervision of AK, AM, and SM. All authors contributed to the study conception and design. Literature searches, data collection, methodological quality, data analysis, and the first draft of the manuscript were performed and written by FZ, AH, NY, SLR, GS, and BS. AK, AM, and SM reviewed and provided feedback on draft versions of the manuscript and all authors approved the final version.

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Correspondence to Ayse Kuspinar.

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Zahir, F., Hanman, A., Yazdani, N. et al. Assessing the psychometric properties of quality of life measures in individuals with amyotrophic lateral sclerosis: a systematic review. Qual Life Res 32, 2447–2462 (2023). https://doi.org/10.1007/s11136-023-03377-2

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