Generic patient-reported outcomes in child health research : a review of conceptual content using World Health Organization definitions

Journal article

Fayed, Nora, Kraus De Camargo, Olaf, Kerr, Elizabeth, Rosenbaum, Peter, Dubey, Ankita, Bostan, Cristina, Faulhaber, Markus, Raina, P and Cieza, Alarcos. (2012). Generic patient-reported outcomes in child health research : a review of conceptual content using World Health Organization definitions. Developmental Medicine and Child Neurology. 54(8), pp. 1085 - 1093. https://doi.org/10.1111/j.1469-8749.2012.04393.x
AuthorsFayed, Nora, Kraus De Camargo, Olaf, Kerr, Elizabeth, Rosenbaum, Peter, Dubey, Ankita, Bostan, Cristina, Faulhaber, Markus, Raina, P and Cieza, Alarcos
Year2012
JournalDevelopmental Medicine and Child Neurology
Journal citation54 (8), pp. 1085 - 1093
ISSN1469-8749
Digital Object Identifier (DOI)https://doi.org/10.1111/j.1469-8749.2012.04393.x
Page range1085 - 1093
Research GroupMary MacKillop Institute for Health Research
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Majnemer, Annette, Shevell, Michael, Law, Mary, Poulin, Chantal and Rosenbaum, Peter. (2010). Level of motivation in mastering challenging tasks in children with cerebral palsy. Developmental Medicine and Child Neurology. 52(12), pp. 1120 - 1126. https://doi.org/10.1111/j.1469-8749.2010.03732.x
Features and impacts of five multidisciplinary community-university research partnerships
King, Gillian, Servais, Michelle, Forchuk, Cheryl, Chalmers, Heather, Currie, Melissa, Law, Mary, Specht, Jacqueline, Rosenbaum, Peter, Willoughby, Teena and Kertoy, M.. (2010). Features and impacts of five multidisciplinary community-university research partnerships. Health and Social Care in the Community. 18(1), pp. 59 - 69. https://doi.org/10.1111/j.1365-2524.2009.00874.x
Development and validation of item sets to improve efficiency of administration of the 66-item Gross Motor Function Measure in children with cerebral palsy
Russell, Dianne, Avery, Lisa, Walter, Stephen, Hanna, Steven, Bartlett, Doreen, Rosenbaum, Peter, Palisano, Robert and Gorter, J. (2010). Development and validation of item sets to improve efficiency of administration of the 66-item Gross Motor Function Measure in children with cerebral palsy. Developmental Medicine and Child Neurology. 52(2), pp. 48 - 54. https://doi.org/10.1111/j.1469-8749.2009.03481.x
Development and validation of item sets to improve efficiency of administration of the 66-item Gross Motor Function Measure in children with cerebral palsy
Russell, Dianne, Avery, Lisa, Walter, Stephen, Hanna, Steven, Bartlett, Doreen, Rosenbaum, Peter, Palisano, Robert and Gorter, J. (2010). Development and validation of item sets to improve efficiency of administration of the 66-item Gross Motor Function Measure in children with cerebral palsy. Developmental Medicine and Child Neurology. 52(2), pp. 48 - 54. https://doi.org/10.1111/j.1469-8749.2009.03481.x
The ICF model of functioning and disability : Incorporating quality of life and human development
McDougall, Janette, Wright, Virgina and Rosenbaum, Peter. (2010). The ICF model of functioning and disability : Incorporating quality of life and human development. Developmental Neurorehabilitation. 13(3), pp. 204 - 211. https://doi.org/10.3109/17518421003620525
Leisure activity preferences for 6 : to 12 - year old children with cerebral palsy
Majnemer, Annette, Shikako-Thomas, Keiko, Chokron, Nathalie, Law, Mary, Shevell, Michael, Chilingaryan, Gevorg, Poulin, Chantal and Rosenbaum, Peter. (2010). Leisure activity preferences for 6 : to 12 - year old children with cerebral palsy. Developmental Medicine and Child Neurology. 52(2), pp. 167 - 173. https://doi.org/10.1111/j.1469-8749.2009.03393.x
Cerebral palsy long term medical, functional, educational and psychosocial outcomes
Mesterman, Ronit, Leitner, Yael, Yifat, Rachel, Gilutz, Gabi, Levi-Hakeini, Ofra, Bitchonsky, Ora, Rosenbaum, Peter and Harel, Shaul. (2010). Cerebral palsy long term medical, functional, educational and psychosocial outcomes. Journal of Child Neurology. 25(1), pp. 36 - 42. https://doi.org/10.1177/0883073809336677
Disease characteristics and psychosocial factors : Explaining the expression of quality of life in childhood epilepsy
Ronen, Gabriel, streiner, David, Verhey, Leonard, Lach, Lucyna, Boyle, Michael, Cunningham, Charles and Rosenbaum, Peter. (2010). Disease characteristics and psychosocial factors : Explaining the expression of quality of life in childhood epilepsy. Epilepsy & Behavior. 18(1), pp. 88 - 93. https://doi.org/10.1016/j.yebeh.2010.02.023
Cerebral Palsy in the 21st Century: Is there anything left to say?
Rosenbaum, Peter. (2009). Cerebral Palsy in the 21st Century: Is there anything left to say? Neuropediatrics: Journal of pediatric neurobiology, neurology and neurosurgery. 40(2), pp. 56 - 60. https://doi.org/10.1055/s-0029-1234104
Stability and decline in gross motor function among children and youth with cerebral palsy aged 2 to 21 years
Hanna, Steven E., Rosenbaum, Peter L., Bartlett, Doreen J., Palisano, Robert, Walter, Stephen D., Avery, Lisa and Russell, Dianne J.. (2009). Stability and decline in gross motor function among children and youth with cerebral palsy aged 2 to 21 years. Developmental Medicine and Child Neurology. 51(4), pp. 295 - 302. https://doi.org/10.1111/j.1469-8749.2008.03196.x
Cerebral palsy in the 21st Century: What's new?
Rosenbaum, Peter. (2009). Cerebral palsy in the 21st Century: What's new? In C Morris and D Condie (Ed.). Recent Developmens in Healthcare for Cerebral Palsy: Implications and Opportunities for Orthotics. United Kingdom: International Society for Prosthetics and Orthotics. pp. 25 - 39
Predicted and observed outcomes in preschool children following speech and language treatment: Parent and clinician perspectives
Thomas-Stonell, Nancy L., Oddson, Bruce, Robertson, Bernadette and Rosenbaum, Peter. (2009). Predicted and observed outcomes in preschool children following speech and language treatment: Parent and clinician perspectives. Journal of Communication Disorders. 42(1), pp. 29 - 42. https://doi.org/10.1016/j.jcomdis.2008.08.002
A measure of community members perceptions of the impacts of research partnerships in health and social services
King, Gillian, Servais, Michelle, Kertoy, Marilyn, Specht, Jacqueline, Currie, Melissa, Rosenbaum, Peter, Law, Mary, Forchuk, Cheryl, Chalmers, Heather and Willoughby, Teena. (2009). A measure of community members perceptions of the impacts of research partnerships in health and social services. Evaluation and Program Planning. 32(3), pp. 289 - 299. https://doi.org/10.1016/j.evalprogplan.2009.02.002
Belief systems of families of children with autism spectrum disorders or down syndrome
King, Gillian, Baxter, Donna, Rosenbaum, Peter, Zwaigenbaum, Lonnie and Bates, Anita. (2009). Belief systems of families of children with autism spectrum disorders or down syndrome. Focus on Autism and Other Developmental Disabilities. 24(1), pp. 50 - 64. https://doi.org/10.1177/1088357608329173
The health and psychosocial functioning of caregivers of children with neurodevelopmental disorders
Lach, Lucyna M., Kohen, Dafna E., Garner, Rochelle E., Brehaut, Jamie C., Miller, Anton R., Klassen, Anne F. and Rosenbaum, Peter. (2009). The health and psychosocial functioning of caregivers of children with neurodevelopmental disorders. Disability and Rehabilitation. 31(8), pp. 607 - 618. https://doi.org/10.1080/09638280802242163
Quality of life in childhood epilepsy: What is the level of agreement between youth and their parents?
Verhey, Leonard H., Kulik, D. M., Ronen, Gabriel M., Rosenbaum, Peter, Lach, L. and Streiner, David L.. (2009). Quality of life in childhood epilepsy: What is the level of agreement between youth and their parents? Epilepsy & Behavior. 14(2), pp. 407 - 410. https://doi.org/10.1016/j.yebeh.2008.12.008
Impact of fundoplication versus gastrojejunal feeding tubes on mortality and in preventing aspiratiion pneumonia in young children with neurologic impairment who have gastroesophageal reflux disease
Srivastava, Rajendu, Downey, Earl C., O'Gorman, Molly, Feola, Peter, Samore, Matthew, Holubkov, Richard, Mundorff, Michael, James, Brent C., Rosenbaum, Peter, Young, Paul C. and Dean, Jonathan M.. (2009). Impact of fundoplication versus gastrojejunal feeding tubes on mortality and in preventing aspiratiion pneumonia in young children with neurologic impairment who have gastroesophageal reflux disease. Pediatrics. 123(1), pp. 338 - 345. https://doi.org/10.1542/peds.2007-1740
Health among caregivers of children with health problems: Findings from a Canadian population-based study
Brehaut, Jamie C., Kohen, Dafna, Garner, Rochelle E., Miller, Anton R., Lach, Lucy M., Klassen, Anne F. and Rosenbaum, Peter. (2009). Health among caregivers of children with health problems: Findings from a Canadian population-based study. American Journal of Public Health. 99(7), pp. 1254 - 1262. https://doi.org/10.2105/AJPH.2007.129817
A randomized controlled trial of the impact of therapeutic horse riding on the quality of life, health, and function of children with cerebral palsy
Rosenbaum, Peter. (2009). A randomized controlled trial of the impact of therapeutic horse riding on the quality of life, health, and function of children with cerebral palsy. Developmental Medicine and Child Neurology. 51(2), pp. 88 - 88. https://doi.org/10.1111/j.1469-8749.2008.03259.x
Mobility experiences of adolescents with cerebral palsy
Palisano, Robert J., Shimmell, Lorie J., Stewart, Debra A., Lawless, John J., Rosenbaum, Peter L. and Russell, Dianne J.. (2009). Mobility experiences of adolescents with cerebral palsy. Physical & Occupational Therapy in Pediatrics. 29(2), pp. 135 - 155. https://doi.org/10.1080/01942630902784746
Use of the GMFCS in infants with CP: The need for reclassification at age 2 years or older
Gorter, Jan Willem, Ketelaar, Marjolijn, Rosenbaum, Peter, Helders, Paul J.M. and Palisano, Robert. (2009). Use of the GMFCS in infants with CP: The need for reclassification at age 2 years or older. Developmental Medicine and Child Neurology. 51(1), pp. 46 - 52. https://doi.org/10.1111/j.1469-8749.2008.03117.x
Putting child development back into developmental disabilities
Rosenbaum, Peter. (2009). Putting child development back into developmental disabilities. Developmental Medicine and Child Neurology. 51(4), pp. 251 - 251. https://doi.org/10.1111/j.1469-8749.2009.03275.x
Quality of life instruments for children and adolescents with neurodisabilities: How to choose the appropriate instrument
Waters, Elizabeth, Davis, Elise, Ronen, Gabriel M., Rosenbaum, Peter, Livingston, Michael H. and Saigal, Saroj. (2009). Quality of life instruments for children and adolescents with neurodisabilities: How to choose the appropriate instrument. Developmental Medicine and Child Neurology. 51(8), pp. 660 - 669. https://doi.org/10.1111/j.1469-8749.2009.03324.x
Proposed motor development assessment protocol for epidemiological studies in children
Rosenbaum, Peter L., Missiuna, C., Echeverria, D. and Knox, S. S.. (2009). Proposed motor development assessment protocol for epidemiological studies in children. Journal of Epidemiology and Community Health. 63(1), pp. 27 - 36. https://doi.org/10.1136/jech.2007.070896
Childhood disability and social policies
Rosenbaum, Peter. (2009). Childhood disability and social policies. British Medical Journal. 338(7703), pp. 1089 - 1090. https://doi.org/10.1136/bmj.b1020
The quality of life for the young adult with neurodisability: Overview and reprise
Rosenbaum, Peter. (2009). The quality of life for the young adult with neurodisability: Overview and reprise. Developmental Medicine and Child Neurology. 51(8), pp. 679 - 682. https://doi.org/10.1111/j.1469-8749.2009.03323.x
Reliability in the ratings of quality of life between parents and their children of school age with cerebral palsy
Majnemer, Annette, Shevell, Michael, Law, Mary, Poulin, Chantal and Rosenbaum, Peter. (2008). Reliability in the ratings of quality of life between parents and their children of school age with cerebral palsy. Quality of Life Research. 17(9), pp. 1163 - 1171. https://doi.org/10.1007/s11136-008-9394-6
Children's quality of life: Separating the person from the disorder
Rosenbaum, Peter. (2008). Children's quality of life: Separating the person from the disorder. Archives of Disease in Childhood. 93(2), pp. 100 - 101. https://doi.org/10.1136/adc.2007.132167
Families of children with chronic conditions: Opportunities to widen the scope of pediatric practice
Rosenbaum, Peter. (2008). Families of children with chronic conditions: Opportunities to widen the scope of pediatric practice. Journal of Pediatrics. 153(3), pp. 304 - 305. https://doi.org/10.1016/j.jpeds.2008.04.010
Health-related quality of life of children with epilepsy in Hong Kong: How does it compare with that of youth with epilepsy in Canada?
Yam, Winnie K. L., Ronen, Gabriel M., Cherk, Sharon W.W., Rosenbaum, Peter, Chan, K. Y., Streiner, David L., Cheng, Sally W.W., Fung, C. W., Ho, Jackson C.S., Kwong, Karen L., Ma, Louis C. K., Ma, David K. H., Tsui, K. W., Wong, Virginia and Wong, Theresa Y. L.. (2008). Health-related quality of life of children with epilepsy in Hong Kong: How does it compare with that of youth with epilepsy in Canada? Epilepsy & Behavior. 12(3), pp. 419 - 426. https://doi.org/10.1016/j.yebeh.2007.11.007
Development of the gross motor function classification system for cerebral palsy
Rosenbaum, Peter L., Palisano, Robert J., Bartlett, Doreen J., Galuppi, Barbara E. and Russell, Dianne J.. (2008). Development of the gross motor function classification system for cerebral palsy. Developmental Medicine and Child Neurology. 50(4), pp. 249 - 253. https://doi.org/10.1111/j.1469-8749.2008.02045.x
Effects of powered mobility on self-initiated behaviours of very young children with locomotor disability (1986)
Rosenbaum, Peter. (2008). Effects of powered mobility on self-initiated behaviours of very young children with locomotor disability (1986). Developmental Medicine and Child Neurology. 50(9), pp. 644 - 644. https://doi.org/10.1111/j.1469-8749.2008.03081.x
Adolescents with cerebral palsy: Stability in measurement of quality of life and health-related quality of life over 1 year
Livingston, Michael H. and Rosenbaum, Peter. (2008). Adolescents with cerebral palsy: Stability in measurement of quality of life and health-related quality of life over 1 year. Developmental Medicine and Child Neurology. 50(9), pp. 696 - 701. https://doi.org/10.1111/j.1469-8749.2008.03053.x
A home for medically complex children: The role of hospital programs
Cohen, Eyal, Friedman, Jeremy, Nicholas, David, Adams, Sherri and Rosenbaum, Peter. (2008). A home for medically complex children: The role of hospital programs. Journal for Healthcare Quality. 30(3), pp. 7 - 15. https://doi.org/10.1111/j.1945-1474.2008.tb01137.x
Family-centered theory: Origins, development, barriers and supports to implementation in rehabilitation medicine
Bamm, Elena L. and Rosenbaum, Peter. (2008). Family-centered theory: Origins, development, barriers and supports to implementation in rehabilitation medicine. Archives of Physical Medicine and Rehabilitation. 89(8), pp. 1618 - 1624. https://doi.org/10.1016/j.apmr.2007.12.034
Content validity of the expanded and revised Gross Motor Function Classification System
Palisano, Robert J., Rosenbaum, Peter, Bartlett, Doreen J. and Livingston, Michael H.. (2008). Content validity of the expanded and revised Gross Motor Function Classification System. Developmental Medicine and Child Neurology. 50(10), pp. 744 - 750. https://doi.org/10.1111/j.1469-8749.2008.03089.x
Participation and enjoyment of leisure activities in school-aged children with cerebral palsy
Majnemer, Annette, Shevell, Michael, Law, Mary, Birnbaum, Rena, Chilingaryan, Gevorg, Rosenbaum, Peter and Poulin, Chantal. (2008). Participation and enjoyment of leisure activities in school-aged children with cerebral palsy. Developmental Medicine and Child Neurology. 50(10), pp. 751 - 758. https://doi.org/10.1111/j.1469-8749.2008.03068.x
Gross Motor Function Measure (GMFM-66 & GMFM-88) users manual
Russell, Dianne J., Rosenbaum, Peter, Wright, Marilyn and Avery, Lisa M.. (2002). Gross Motor Function Measure (GMFM-66 & GMFM-88) users manual Mac Keith Press.