Quality of Life Research

, Volume 24, Issue 11, pp 2615–2623 | Cite as

Construction of a Quality of Life Questionnaire for slowly progressive neuromuscular disease

  • Antoine Dany
  • Coralie Barbe
  • Amandine Rapin
  • Christian Réveillère
  • Jean-Benoit Hardouin
  • Isabella Morrone
  • Aurore Wolak-Thierry
  • Moustapha Dramé
  • Arnaud Calmus
  • Sabrina Sacconi
  • Guillaume Bassez
  • Vincent Tiffreau
  • Isabelle Richard
  • Benjamin Gallais
  • Hélène Prigent
  • Redha Taiar
  • Damien Jolly
  • Jean-Luc Novella
  • François Constant Boyer
Article
First Online:
Accepted:

Abstract

Purpose

To build a questionnaire to assess health-related quality of life (HRQL) in patients suffering from slowly progressive neuromuscular disease (NMD) using item response theory (IRT).

Methods

A pool of 64 items and a validated questionnaire (WHOQOL-BREF) were administered to 159 patients recruited in eight NMD referral centers. Exploratory statistical analysis included methods derived from both IRT and classical test theory.

Results

We constructed a questionnaire named QoL–NMD which is composed of two general items and 24 items classified in three domains: (1) “Impact of Physical Symptoms,” (2) “Self-perception” and (3) “Activities and Social Participation.” Each domain has good psychometric properties (Cronbach’s alpha > 0.77, test–retest ICC > 0.81, Loevinger’s H > 0.41) and meets IRT assumptions. Comparison with the WHOQOL-BREF enabled assessing similarities and discrepancies with a generic questionnaire.

Conclusion

This study enabled the development of a new HRQL questionnaire specifically designed for slowly progressive NMD patients. The QoL–NMD is short enough to be used in clinical practice (26 items). The next steps will be to validate QoL–NMD by re-assessing psychometrics in an independent sample of patients and calibrate the IRT scoring system.

Keywords

Item response theory Neuromuscular disease Outcome research Patient outcome assessment Quality of life 
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Notes

Acknowledgments

The authors disclosed receipt of the following financial support for the research, authorship and publication of this article: This project was supported by the French Muscular Dystrophy Association (Association française contre les myopathies/AFM-téléthon) and the Champagne-Ardenne Region (programme ESSAIMAGE; Principal Investigator: François Constant Boyer).

Conflict of interest

The authors have declared no potential conflicts of interest with respect to the research, authorship and publication of this article.

Supplementary material

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Copyright information

© Springer International Publishing Switzerland 2015

Authors and Affiliations

  • Antoine Dany
    • 1
    • 2
    • 10
  • Coralie Barbe
    • 1
    • 2
  • Amandine Rapin
    • 1
    • 2
  • Christian Réveillère
    • 3
  • Jean-Benoit Hardouin
    • 4
  • Isabella Morrone
    • 1
    • 2
  • Aurore Wolak-Thierry
    • 1
    • 2
  • Moustapha Dramé
    • 1
    • 2
  • Arnaud Calmus
    • 1
    • 2
  • Sabrina Sacconi
    • 5
  • Guillaume Bassez
    • 3
  • Vincent Tiffreau
    • 6
  • Isabelle Richard
    • 7
  • Benjamin Gallais
    • 8
  • Hélène Prigent
    • 9
  • Redha Taiar
    • 1
  • Damien Jolly
    • 1
    • 2
  • Jean-Luc Novella
    • 1
    • 2
  • François Constant Boyer
    • 1
    • 2
    • 10
  1. 1.University of Reims Champagne-ArdenneReimsFrance
  2. 2.Reims University HospitalReimsFrance
  3. 3.Henri Mondor HospitalCréteilFrance
  4. 4.University of NantesNantesFrance
  5. 5.Nice University HospitalNiceFrance
  6. 6.Swynghedauw HospitalLilleFrance
  7. 7.Angers University HospitalAngersFrance
  8. 8.Myology InstituteParisFrance
  9. 9.Raymond-Poincaré HospitalGarchesFrance
  10. 10.Service de Médecine Physique et Réadaptation, Centre de Référence des Maladies Neuromusculaires, Hôpital SébastopolCHU de ReimsReims CedexFrance

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