Development and validation of a patient-centered, meningioma-specific quality-of-life questionnaire

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  • 1 Division of Neurosurgery, Department of Surgery and
  • | 2 Li Ka Shing Knowledge Institute, St. Michael’s Hospital, Unity Health Toronto, University of Toronto;
  • | 3 Division of Neurosurgery, Department of Surgery, Sunnybrook Health Sciences Centre, University of Toronto;
  • | 4 Department of Supportive Care, Princess Margaret Cancer Centre, University Health Network, Toronto;
  • | 5 Department of Psychiatry, Faculty of Medicine, University of Toronto;
  • | 6 Division of Neurosurgery, Toronto Western Hospital, University Health Network, University of Toronto; and
  • | 7 Dalla Lana School of Public Health, University of Toronto, Ontario, Canada
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OBJECTIVE

Meningiomas can have significant impact on health-related quality of life (HRQOL). Patient-centered, disease-specific instruments for assessing HRQOL in these patients are lacking. To this end, the authors sought to develop and validate a meningioma-specific HRQOL questionnaire through a standardized, patient-centered questionnaire development methodology.

METHODS

The development of the questionnaire involved three main phases: item generation, item reduction, and validation. Item generation consisted of semistructured interviews with patients (n = 30), informal caregivers (n = 12), and healthcare providers (n = 8) to create a preliminary list of items. Item reduction with 60 patients was guided by the clinical impact method, multiple correspondence analysis, and hierarchical cluster analysis. The validation phase involved 162 patients and collected evidence on extreme-groups validity; concurrent validity with the SF-36, FACT-Br, and EQ-5D; and test-retest reliability. The questionnaire takes on average 11 minutes to complete.

RESULTS

The meningioma-specific quality-of-life questionnaire (MQOL) consists of 70 items representing 9 domains. Cronbach’s alpha for each domain ranged from 0.61 to 0.91. Concurrent validity testing demonstrated construct validity, while extreme-groups testing (p = 1.45E-11) confirmed the MQOL’s ability to distinguish between different groups of patients.

CONCLUSIONS

The MQOL is a validated, reliable, and feasible questionnaire designed specifically for evaluating QOL in meningioma patients. This disease-specific questionnaire will be fundamentally helpful in better understanding and capturing HRQOL in the meningioma patient population and can be used in both clinical and research settings.

ABBREVIATIONS

EORTC = European Organisation for Research and Treatment of Cancer; FACT-Br = Functional Assessment of Cancer Therapy–Brain; HCP = healthcare provider; HRQOL = health-related QOL; MQOL = meningioma-specific QOL questionnaire; QOL = quality of life.

Supplementary Materials

    • Supplemental Fig. 1 and Supplemental File 1 (PDF 1657 KB)

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Contributor Notes

Correspondence Michael D. Cusimano: St. Michael’s Hospital, University of Toronto, ON, Canada. injuryprevention@smh.ca.

INCLUDE WHEN CITING Published online May 14, 2021; DOI: 10.3171/2020.11.JNS201761.

Disclosures The authors report no conflict of interest concerning the materials or methods used in this study or the findings specified in this paper.

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