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Life Quality Outcomes

in Children and Young People with Neurological and Developmental Conditions

Product Type: Print Edition (Complete Book)

ISBN: 9781908316585

Series: Clinics in Developmental Medicine

Edition: 1st

Publication date: March 2013

Page count: 412

Buy now from Mac Keith Press


You can download chapters or sections from this book

Health care professionals need to understand their patients’ views of their condition and its effects on their health and well-being.

This book builds on the World Health Organization’s concepts of ‘health’, ‘functioning’ and ‘quality of life’ for young people with neurodisabilities: it emphasises the importance of engaging with patients in the identification of both treatment goals and their evaluation. Uniquely, it enables health care professionals to find critically reviewed outcomes-related information. The authors are leaders in their respective research fields and discuss theory, concepts, and evidence, and how these are applied in clinical settings and research applications.

  • Summaries of key facts enable decision making at various points of care
  • International team of experts presents up-to-date evidence-based approaches to better understand, to be able to measure and ideas to intervene to improve outcomes and decrease disability
  • Practical generic strategies to improve the care of young people with neurodevelopmental conditions
  • The non-categorical approach that the authors have taken provides opportunities for readers to find the big issues within the details
  • This book addresses relatively new and emerging concepts about the life experiences of young people growing up with neurological and developmental conditions that influence their life course.


  • Health care professionals working with children and youth with neurological and developmental conditions, wanting to expand their clinical or research horizons.
  • Frontline service providers, health services and social science researchers, clinical program managers and policy makers concerned with ensuring that their clinical or programmatic services are addressing contemporary issues as effectively as possible.
  • Students in the health professions and others in related fields (such as social work).

Clinics in Developmental Medicine

Gabriel M. Ronen (Editor)

Dr. Gabriel M. Ronen

Gabriel M. Ronen is a Professor of Pediatrics at McMaster University and a Pediatric Neurologist at McMaster Children's Hospital. He is certified in Neurology by the Royal College of Physicians and Surgeons of Canada.

He is also co-editor of the books Ethics in Child Health and ICF: A Hands-on Approach for Clinicians and Families.

Peter L. Rosenbaum (Editor)

Peter Rosenbaum August 2016 portrait

Peter Rosenbaum is a Professor of Paediatrics at McMaster University, Ontario, Canada, where he holds a Canada Research Chair in Childhood Disability, Mentoring and Dissemination. He is co-founder of the CanChild Centre for Childhood Disability Research.

He is also co-editor of the books Cerebral Palsy: From Diagnosis to Adult LifeEthics in Child HealthGross Motor Function Measure (GMFM-66 & GMFM-88) and ICF: A Hands-on Approach for Clinicians and Families.

  • Chapter 1: Setting the Stage: Introduction and general overview. Gabriel Ronen and Peter Rosenbaum, McMaster University
  • Section A: Concepts and perspectives of outcomes
  • (i) Contemporary Concepts in Health, Disability and Life Quality
  • Chapter 2: Concepts and perspectives on ‘health’ and ‘outcomes’. Gabriel Ronen and Peter Rosenbaum, McMaster University
  • Chapter 3: ‘Quality of life’ and ‘health-related quality of life’.Rebecca Renwick, University of Toronto
  • Chapter 4: ‘Health status’ and the usefulness of the ICF framework: clinical and program perspectivesOlaf Kraus de Camargo & Nora Fayed, McMaster University
  • Chapter 5: The role of ‘participation’ in the lives of children and youth with neurodevelopmental conditions.Dana Anaby McGill University & Mary Law, McMaster University
  • (ii) Life Issues in Children and Young People with neurodevelopmental conditions.
  • Chapter 6: A developmental perspective on childhood neurological conditions. Peter Rosenbaum and Gabriel Ronen, McMaster University
  • Chapter 7: Psychological impact of living with a neurodevelopmental condition. David Dunn & Michelle Thorne Indiana University
  • Chapter 8: The characteristics of peer relations among children with neurological and developmental conditions. Tracy Vaillancourt,Jennifer Hepditch, Irene Vitoroulis, Amanda Krygsman, Christine Blain-Arcaro, University of Ottawa & Patricia McDougall, St. Thomas More College, University of Saskatchewan
  • Chapter 9: Romantic relationships and sexual experiences. Diana Wiegerink & Marij Roebroeck Erasmus University Rotterdam
  • (iii) Contextual Factors in the Lives of Children and Young People with neurodevelopmental conditions.
  • Chapter 10: Contextual facilitators: Resilience, Coping and Sense of Coherence. Kim Schonert-Reichl University of British Columbia & Veronica Smith University of Alberta
  • Chapter 11: The family does matter! Lucyna Lach, McGill University
  • Chapter 12: Stigma: A pervasive contextual barrier. Ann Jacoby, University of Liverpool & Joan Austin Indiana University
  • Chapter 13: Advancing the rights of children with neurodevelopmental conditions. Sheila Jennings York University, Toronto
  • Section B: Quality of life outcomes: Methods and measurements
  • Chapter 14: Measurement concepts, standards and perspectives of patient-reported outcomes. Aileen Davis, University of Toronto
  • Chapter 15: Practical considerations in choosing Health, Quality of life and health-related quality of life Scales for Children. Nora Fayed, McMaster University
  • Chapter 16: Complexity in the lives of children and young people with neurological and developmental conditions: The role of qualitative research. Debra Stewart McMaster University
  • Chapter 17: Understanding self and proxy ratings. Gabriel Ronen & Davis Streiner, McMaster University
  • Chapter 18: Ethics of patient reported outcome measures. David Streiner, McMaster University
  • Section C: Opportunities to improve quality life outcomes
  • (i) Education and Disability
  • Chapter 19: Knowledge translation: Accessing and using the best evidence to improve child and family outcome. Iona Novak University of Notre Dame Sydney, Australia, Dianne Russell McMaster University, and Marjolijn Ketelaar University Medical Center Utrecht and Rehabilitation Center De Hoogstraat Utrecht, the Netherlands
  • Chapter 20: Interprofessional Education and Collaboration: Key Approaches for Improving Care. Scott Reeves University of California, San Francisco
  • Chapter 21: A specialized learning environment can enhance the outcomes of children with cognitive impairment. Elizabeth Kerr Hospital for Sick Children Toronto & Miriam Riches OISE-University of Toronto
  • (ii) Growing into Adulthood with a Childhood Neurodevelopmental Condition.
  • Chapter 22: Transition to adulthood: enhancing health and quality of life. Jan Willem Gorter McMaster University, and Marij Roebroeck Erasmus University
  • Chapter 23: Why we need adult specialists for people with childhood onset neurodevelopmental conditions. Bernard Dan, Free University of Brussels
  • Chapter 24: Longitudinal approaches to populations with childhood onset neurodevelopmental conditions: Australian experience with Rett syndrome. Jenny Downs &Helen Leonard, University of Western Australia
  • (iii) Youth, Disability and Society.
  • Chapter 25: Policies, Programs and Practices: The tensions about life quality outcomes. Gina Glidden, McGill University; & Rachel Birnbaum University of Western Ontario
  • Chapter 26: What is the emerging role of parent and community organizations in health promotion? Primarily a UK experience. Chris Morris & Val Shilling, Medical School Exeter UK
  • Section D: Conclusions and future developments
  • Chapter 27: The ICF and Life Quality Outcomes. Peter Rosenbaum and Gabriel Ronen, McMaster University

'As justification for buying the book, I cannot better John McLaughlin who wrote the Foreword: ëFailure to recognize the distinction between causes of disability and the consequences has impeded both research and public understanding. The authors do a great service by illuminating the confusing literature that has evolved regarding the related but distinct concepts of health status, health-related quality of life, and a personal view of quality of life.' - Allan Colver, Developmental Medicine & Child Neurology, 2013

'This book draws together a huge amount of literature and research, from what is a relatively new subject area, and poses some interesting questions for further investigation.' Christina Calderon, Association of Paediatric Chartered Physiotherapists Journal 2014