Quality of life and functional evaluation measures for osteogenesis imperfecta

Verity Pacey, Kathleen Montpetit

Research output: Chapter in Book/Report/Conference proceedingChapterpeer-review

Abstract

The success of any surgical treatment must focus on an individual’s goals and the importance of meaningful participation in everyday life. Everyday life poses multiple challenges to individuals with OI. Recurrent fractures, pain, and fatigue create barriers to an individual’s participation in daily activities at home, school, or work and when interacting with peers. Impairments such as weakness, leg length discrepancy, and altered skeletal alignment are often the focus of health professionals when making treatment decisions and recommendations. However, prioritization of an individual’s goals, their functional abilities, and their self-perceived overall quality of life is required during surgical decision-making.
Health professionals, working together in multidisciplinary teams, must aim to empowerand enable their patients to achieve the optimal participation and well-being that is considered important to each individual. When managing children with OI, the broader role of the family and their goals must also be considered.
Therefore, this chapter aims to provide surgeons with an overview of functional performance and quality of life of individuals with OI, to assist in surgical goal setting. Strategies to incorporate appropriate and timely assessment of these constructs into clinical decision-making when planning and measuring the
success of surgical interventions for an individual with OI will also be discussed and case studies provided.
Original languageEnglish
Title of host publicationOsteogenesis imperfecta
Subtitle of host publicationa case-based guide to surgical decision-making and care
EditorsRichard W. Kruse
Place of PublicationSwitzerland
PublisherSpringer, Springer Nature
Chapter5
Pages57 - 70
Number of pages14
ISBN (Electronic)9783030425272
ISBN (Print)9783030425265
DOIs
Publication statusPublished - Jun 2020

Keywords

  • osteogenesis imperfecta
  • orthopaedic
  • function
  • quality of life

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