Research Topics
| Nancy L YoungSummaryAffiliation: The Hospital for Sick Children Country: Canada Publications
| Collaborators
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Detail Information
Publications
Development of a health-related quality of life measure for boys with haemophilia: the Canadian Haemophilia Outcomes--Kids Life Assessment Tool (CHO-KLAT)N L Young
The Hospital for Sick Children, Toronto, Canada
Haemophilia 10:34-43. 2004..This child-centric focus distinguishes the CHO-KLAT from alternative measures of QoL. Further research will assess the measurement properties of the CHO-KLAT...- Telehomecare: a comparison of three Canadian modelsNancy L Young
The Hospital for Sick Children, Toronto, Ontario, Canada
Telemed J E Health 10:45-52. 2004..THC provides opportunities to address limitations in the current system and to improve upon equity of access to quality care for children making the transition from hospital to home... - Use of health care among adults with chronic and complex physical disabilities of childhoodNancy L Young
The Hospital for Sick Children, Toronto, Canada
Disabil Rehabil 27:1455-60. 2005..Their admission rate is 9.0 times that of the general population, and few have a primary care physician. A new model of service may be necessary for this high-needs group... - How well does the Canadian Haemophilia Outcomes-Kids' Life Assessment Tool (CHO-KLAT) measure the quality of life of boys with haemophilia?Nancy L Young
The Hospital for Sick Children, Toronto, Ontario, Canada
Pediatr Blood Cancer 47:305-11. 2006..This paper describes the final phase of development of a disease-specific measure of QoL for boys with haemophilia: the Canadian Haemophilia Outcomes-Kids Life Assessment Tool (CHO-KLAT)... - Taking the call-bell home: a qualitative evaluation of Tele-HomeCare for childrenNancy L Young
Community Health Systems Resource Group, The Hospital for Sick Children, 555 University Avenue, Toronto, Ontario, Canada M5G 1X8
Health Soc Care Community 14:231-41. 2006..However, our findings are consistent with previous reports of the benefits of THC. Thus, THC is a successful method of healthcare service delivery that enables a safe return home with professional support provided remotely... 
Transition to adult-oriented health care: perspectives of youth and adults with complex physical disabilitiesNancy L Young
School of Rural and Northern Health, Laurentian University, Sudbury, Ontario, Canada
Phys Occup Ther Pediatr 29:345-61. 2009..The transition to adulthood is extremely difficult for individuals with disabilities. We sought to explore the specific issue of transition to adult-oriented health care in a Canadian context...- The health and quality of life outcomes among youth and young adults with cerebral palsyNancy L Young
School of Rural and Northern Health, Laurentian University, Sudbury, Ontario, Canada
Arch Phys Med Rehabil 91:143-8. 2010..Young NL, Rochon TG, McCormick A, Law M, Wedge JH, Fehlings D. The health and quality of life outcomes among youth and young adults with cerebral palsy... - Using exploratory focus groups to establish a sampling strategy to investigate disability experienced by adults living with HIVKelly K O'Brien
Centre for Research on Inner City Health, The Keenan Research Centre in the Li Ka Shing Knowledge Institute, St Michael s Hospital, Ontario, Canada
Curr HIV Res 7:626-33. 2009..Exploratory focus groups may be a useful technique to determine a sampling strategy when exploring a new phenomenon in HIV qualitative research... - An examination of quality of life of children and parents during their Tele-Homecare experienceNancy L Young
The Hospital for Sick Children, Toronto, Ontario
Telemed J E Health 12:663-71. 2006..Moreover, the improvements were sustained beyond the termination of the THC service and were not associated with additional burden on families... 
How do existing HIV-specific instruments measure up? Evaluating the ability of instruments to describe disability experienced by adults living with HIVKelly K O'Brien
Department of Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario, Canada
Health Qual Life Outcomes 8:88. 2010..In this paper, we describe the extent to which existing HIV-specific health-status instruments capture the experience of disability for adults living with HIV...- Exploring disability from the perspective of adults living with HIV/AIDS: development of a conceptual frameworkKelly K O'Brien
Department of Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario, Canada
Health Qual Life Outcomes 6:76. 2008..The purpose of this research was to develop a conceptual framework of disability from the perspective of adults living with HIV... - Cross-cultural adaptation of the CHO-KLAT for boys with hemophilia in rural and urban ChinaRunhui Wu
Department of Haematology, Beijing Children s Hospital and Capital Medical University, Beijing, China
Health Qual Life Outcomes 10:112. 2012..Quality of life (QoL) is increasingly recognized as an important outcome measure in clinical trials. The Canadian Hemophilia Outcomes-Kids Life Assessment Tool (CHO-KLAT) shows promise for use in China... - The Internet is valid and reliable for child-report: an example using the Activities Scale for Kids (ASK) and the Pediatric Quality of Life Inventory (PedsQL)Nancy L Young
School of Rural and Northern Health, Laurentian University, Sudbury, Ontario, Canada
J Clin Epidemiol 62:314-20. 2009..This study tested the impact of web administration on well-established measures of children's physical function and quality of life... - The Quality of My Life questionnaire: the minimal clinically important difference for pediatric rheumatology patientsGrace W K Gong
Division of Rheumatology, Population Health Sciences Program, Research Institute, The Hospital for Sick Children, Toronto, Ontario, Canada
J Rheumatol 34:581-7. 2007..To establish construct validity of the QoML questionnaire. To determine the minimal clinically important difference (MCID) for the Quality of Life (QOL) and Health-Related Quality of Life (HRQOL) scales... - Validity, reliability, and responsiveness of a new measure of health-related quality of life in children with immune thrombocytopenic purpura: the Kids' ITP ToolsRobert J Klaassen
Department of Pediatrics, Children s Hospital of Eastern Ontario, Ottawa, Ontario, Canada
J Pediatr 150:510-5, 515.e1. 2007..To refine the disease-specific health-related quality of life measure in immune (idiopathic) thrombocytopenic purpura (ITP) and to determine its validity, reliability, and responsiveness to change... - Putting episodic disability into context: a qualitative study exploring factors that influence disability experienced by adults living with HIV/AIDSKelly K O'Brien
Department of Health Policy, Management and Evaluation, Faculty of Medicine, University of Toronto, Ontario, Canada
J Int AIDS Soc 12:5. 2009..abstract:.. - Comparison of oral versus normal and high-dose rectal acetaminophen in the treatment of febrile childrenDennis Scolnik
Division of Emergency Services, The Hospital for Sick Children, Toronto, Ontario, Canada
Pediatrics 110:553-6. 2002..To compare the defervescent effect of high-dose rectal suppository acetaminophen with the recommended oral and rectal dosages and to evaluate acceptability of rectal acetaminophen... - Comparing two measures of quality of life for children with haemophilia: the CHO-KLAT and the Haemo-QoLC S Bradley
Department of Rehabilitation Services, The Hospital for Sick Children, Toronto, ON, Canada
Haemophilia 12:643-53. 2006..The present recommendation is that the measures be run independently, but preferably concurrently in studies of children with haemophilia... - Construct validation of the Health Utilities Index and the Child Health Questionnaire in children undergoing cancer chemotherapyL Sung
Department of Health Policy Management and Evaluation, University of Toronto, Ontario, Canada
Br J Cancer 88:1185-90. 2003..1, s.d.=3.4 min, P<0.0001). In conclusion, HUI and CHQ demonstrated construct validity in children undergoing cancer chemotherapy. The Health Utilities Index is subject to a ceiling effect whereas CHQ requires more time to complete... - Health-related quality of life (HRQL) scores reported from parents and their children with chronic illness differed depending on utility elicitation methodL Sung
Department of Pediatrics, University of Toronto, Toronto, Ontario, Canada
J Clin Epidemiol 57:1161-6. 2004..To describe the relationship between health-related quality of life (HRQL) as measured by utility when elicited from parents and their children with chronic illness... - Pilot study of the effect of romiplostim on child health-related quality of life (HRQoL) and parental burden in immune thrombocytopenia (ITP)Robert J Klaassen
Children s Hospital of Eastern Ontario, University of Ottawa, 401 Smyth Road, Ottawa, Ontario, Canada
Pediatr Blood Cancer 58:395-8. 2012..In this study, the impact of romiplostim treatment on the HRQoL of children with chronic ITP was assessed using the Kid's ITP Tools (KIT)... - Men on the margin: a Bourdieusian examination of living into adulthood with muscular dystrophyBarbara E Gibson
Department of Physical Therapy, University of Toronto, Toronto, Ont, Canada
Soc Sci Med 65:505-17. 2007..While the men created positive personal spaces for recognition and success, their achievements were severely circumscribed by significant social inequities... - The relationship between function, self-perception, and spinal deformity: Implications for treatment of scoliosis in children with spina bifidaEugene K Wai
Bloorview MacMillan Centre and The Hospital for Sick Children, Toronto, Ontario, Canada
J Pediatr Orthop 25:64-9. 2005..In conclusion, surgeons should be clear in their indications for surgery and recognize that in the short term the potential benefit of surgery may be, at best, to improve only sitting balance... - Advancing rehabilitation research: an interactionist perspective to guide question and designDoreen J Bartlett
School of Physical Therapy, Faculty of Health Sciences, The University of Western Ontario, London, Ontario, Canada
Disabil Rehabil 28:1169-76. 2006..Rehabilitation researchers--and those who fund their work--should consider and value the use of diverse research methods to best answer the questions posed from the interactionist perspective... - Comparison of three outcomes instruments in childrenJ Pencharz
The Hospital for Sick Children, Toronto, ON, Canada
J Pediatr Orthop 21:425-32. 2001..The ASK and PODCI instruments were highly correlated and discriminated better than the CHQ-PF-28, with fewer floor and ceiling effects. Each questionnaire, however, seemed to be measuring slightly different things... - Assessing the efficacy of a school-based asthma education program for children: a pilot studyN L Young
Division of Paediatric Medicine, Hospital for Sick Children, 555 University Avenue, Toronto, ON, M5G 1X8
Can J Public Health 92:30-4. 2001..Asthma diminishes the health-related quality of life for many school-aged children. This study sought to explore the effect of a School-Based Asthma Education Program (SBAEP) on quality of life... - The Gap Study (GapS) interview--developing a process to determine the meaning and determinants of quality of life in children with arthritis and rheumatic diseaseG W K Gong
Division of Rheumatology, Research Institute, The Hospital for Sick Children, and Department of Pediatrics, University of Toronto, Ontario, Canada
Clin Exp Rheumatol 25:486-93. 2007..We performed this study to develop items and methods for measuring and valuing these gaps in order to better determine individual QOL for children with rheumatic diseases... - Validity of a modified standard gamble elicited from parents of a hospital-based cohort of childrenL Sung
Division of Hematology/Oncology, and Population Health Sciences, Hospital for Sick Children, Toronto, Ontario, M5G 1X8
J Clin Epidemiol 56:848-55. 2003..49; P<.01 for both). Both Mod SG and SG were moderately correlated with TTO (r=0.47 and r=0.05, P<0.002 for both). CONCLUSION: The Mod SG did not perform better than SG. Two nonoverlapping groups of HRQL measures were demonstrated... - What does "active disease" mean? patient and parent perceptions of disease activity in the systemic arthritis form of juvenile idiopathic arthritis (SO-JIA)M Batthish
Division of Rheumatology, The Hospital for Sick Children, 555 University Avenue, Toronto, Ontario M5G 1X8, Canada
Rheumatology (Oxford) 44:796-9. 2005..We sought to elicit specific items reflecting their perceptions of active disease that may be considered for inclusion in a disease activity measure for SO-JIA... - The transition to adulthood for children with cerebral palsy: what do we know about their health care needs?Nancy L Young
Laurentian University, Sudbury, Ontario, Canada
J Pediatr Orthop 27:476-9. 2007 - Impairment and activity limitation associated with epiphyseal dysplasia in childrenRita Damignani
Department of Rehabilitation Services, Hospital for Sick Children, Toronto, ON, Canada
Arch Phys Med Rehabil 85:1647-52. 2004..To develop a profile of impairment and activity limitation among children with epiphyseal dysplasia (ED) and to identify the relationship between these 2 domains... - Evaluating physical function in an adolescent bone tumor populationP Janine Pakulis
Department of Rehabilitation, Hospital for Sick Children, Toronto, Ontario, Canada
Pediatr Blood Cancer 45:635-43. 2005.... - Rasch analysis of the Western Ontario McMaster (WOMAC) Osteoarthritis Index: results from community and arthroplasty samplesA M Davis
Department of Physical Therapy, Graduate Department of Rehabilitation Science and Health Policy, Management and Evaluation, Toronto Rehabilitation Institute and the University of Toronto, Toronto, ON, Canada
J Clin Epidemiol 56:1076-83. 2003..This study is based on secondary analysis of Western Ontario McMaster Osteoarthritis Index (WOMAC) data from a community sample over 55 years and total hip or knee arthroplasty samples presurgery and 1-year postoperative... - Measurement properties of the activities scale for kidsN L Young
Division of Pediatric Medicine, The Hospital for Sick Children, Toronto, Ontario, Canada
J Clin Epidemiol 53:125-37. 2000..The quality of this measure will enable clinical studies to measure outcome not only in a way that is relevant to patients, but also in a way that is sensitive to small amounts of change and is practical and inexpensive... - Developing a disease activity tool for systemic-onset juvenile idiopathic arthritis by international consensus using the Delphi approachA V Ramanan
Department of Pediatrics, Division of Rheumatology, The Hospital for Sick Children, Toronto, ON, Canada
Rheumatology (Oxford) 44:1574-8. 2005..As a next step, the measurement properties of these items will be tested to help develop a disease activity tool... - Activities scale for kids: an analysis of normalsAmy C Plint
Children s Hospital of Eastern Ontario, University of Ottawa, Canada
J Pediatr Orthop 23:788-90. 2003..12 (SD 6.45). This score differs significantly from the mean summary score for children with mild disabilities as determined in previous studies of disability (P = 0.005)... - Prevalence of and risk factors for methamphetamine use in northern Thai youth: results of an audio-computer-assisted self-interviewing survey with urine testingMartin V Sattah
Division of HIV/AIDS Prevention, National Center for HIV, Atlanta, GA, USA
Addiction 97:801-8. 2002..Demographic, behavioral and psychosocial correlates of methamphetamine use identified in this study may be helpful for the design and implementation of preventive interventions... - What do we really know about the transition to adult-centered health care? A focus on cerebral palsy and spina bifidaJessie A Binks
Laurentian University, Sudbury, ON, Canada
Arch Phys Med Rehabil 88:1064-73. 2007.... - HIV type 1 incidence estimates by detection of recent infection from a cross-sectional sampling of injection drug users in Bangkok: use of the IgG capture BED enzyme immunoassayDale J Hu
Division of HIV AIDS Prevention and Division of AIDS, STD, TB Laboratory Research, Centers for Disease Control and Prevention, Atlanta, Georgia 30333, USA
AIDS Res Hum Retroviruses 19:727-30. 2003.... - Youth and young adults with cerebral palsy: their use of physician and hospital servicesNancy L Young
School of Human Kinetics, Laurentian University, Sudbury, ON, Canada
Arch Phys Med Rehabil 88:696-702. 2007..To examine patterns of health care utilization among youth and young adults who have cerebral palsy (CP) and to provide information to guide the development of health services for adults who have CP... - A conceptual model of the factors affecting the recreation and leisure participation of children with disabilitiesGillian King
Thames Valley Children s Centre, 779 Base Line Road East, London, Ontario, Canada N6C 5Y6
Phys Occup Ther Pediatr 23:63-90. 2003..The proposed model is expected to be a useful tool for guiding future research studies and for developing policies and programs for children with disabilities and their families...