Development of six PROMIS pediatrics proxy-report item banks.

Health and Quality of Life Outcomes
Debra E IrwinDarren A DeWalt

Abstract

Pediatric self-report should be considered the standard for measuring patient reported outcomes (PRO) among children. However, circumstances exist when the child is too young, cognitively impaired, or too ill to complete a PRO instrument and a proxy-report is needed. This paper describes the development process including the proxy cognitive interviews and large-field-test survey methods and sample characteristics employed to produce item parameters for the Patient Reported Outcomes Measurement Information System (PROMIS) pediatric proxy-report item banks. The PROMIS pediatric self-report items were converted into proxy-report items before undergoing cognitive interviews. These items covered six domains (physical function, emotional distress, social peer relationships, fatigue, pain interference, and asthma impact). Caregivers (n = 25) of children ages of 5 and 17 years provided qualitative feedback on proxy-report items to assess any major issues with these items. From May 2008 to March 2009, the large-scale survey enrolled children ages 8-17 years to complete the self-report version and caregivers to complete the proxy-report version of the survey (n = 1548 dyads). Caregivers of children ages 5 to 7 years completed the proxy r...Continue Reading

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References

Jul 2, 2002·The Journal of Pediatrics·John V CampoKelly J Kelleher
Nov 18, 2003·Ambulatory Pediatrics : the Official Journal of the Ambulatory Pediatric Association·James W VarniDouglas Skarr
Sep 20, 2006·The Journal of Adolescent Health : Official Publication of the Society for Adolescent Medicine·Stéphane RobitailUNKNOWN European Kidscreen Group
Mar 23, 2007·Archives of Disease in Childhood·Christine Eiser, Meriel Jenney
Apr 20, 2007·Medical Care·Darren A DeWaltUNKNOWN PROMIS Cooperative Group
Apr 23, 2008·Quality of Life Research : an International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation·Tasanee R WalshDarren A DeWalt
Jun 4, 2008·Quality of Life Research : an International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation·Penney UptonChristine Eiser
Jun 1, 2005·Expert Review of Pharmacoeconomics & Outcomes Research·Ulrike Ravens-SiebererEuropean Kidscreen Group
Mar 6, 2010·Quality of Life Research : an International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation·Debra E IrwinDarren A DeWalt
Mar 10, 2010·Quality of Life Research : an International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation·Debra E IrwinDarren A DeWalt
Apr 17, 2010·The Journal of Asthma : Official Journal of the Association for the Care of Asthma·Karin B YeattsDarren A DeWalt
Jul 16, 2010·The Journal of Pain : Official Journal of the American Pain Society·James W VarniDarren A Dewalt
Jul 26, 2011·Quality of Life Research : an International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation·Debra E IrwinDarren A DeWalt
Oct 6, 2011·Quality of Life Research : an International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation·James W VarniDarren A DeWalt

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Citations

Oct 6, 2011·Quality of Life Research : an International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation·James W VarniDarren A DeWalt
Apr 2, 2013·Quality of Life Research : an International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation·Anna L KratzStephen M Haley
Jun 7, 2013·Quality of Life Research : an International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation·James W VarniDarren A DeWalt
Feb 28, 2013·Health and Quality of Life Outcomes·Angie Mae RoddayUNKNOWN HSCT-CHESS™ Study
Jan 27, 2016·Pediatric Neurology·Kathi J KemperPhilip F Binkley
Aug 30, 2014·Health and Quality of Life Outcomes·Kristofer Bandayrel, Bradley C Johnston
Jun 13, 2015·Quality of Life Research : an International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation·Jessica M KramerWendy J Coster
Nov 26, 2015·Plastic and Reconstructive Surgery·Danielle N ShapiroSeth Warschausky
Apr 18, 2015·BMC Pediatrics·Sara D KhanguraUNKNOWN Canadian Inherited Metabolic Diseases Research Network
Mar 31, 2015·Quality of Life Research : an International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation·Lotte HavermanCaroline B Terwee
Oct 14, 2014·Quality of Life Research : an International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation·J DevineU Ravens-Sieberer
Aug 16, 2016·PM & R : the Journal of Injury, Function, and Rehabilitation·Kate W-C ChangNoelle E Carlozzi
Sep 17, 2016·BMC Oral Health·Honghu LiuJames Crall
Nov 2, 2016·Journal of Developmental and Behavioral Pediatrics : JDBP·Marisa ToomeyNathan J Blum
Aug 1, 2014·Journal of the National Cancer Institute·Sharon M CastellinoBeverly J Lange
Apr 15, 2017·Pediatric Blood & Cancer·Sarah Dobrozsi, Julie Panepinto
Sep 27, 2014·Multiple Sclerosis : Clinical and Laboratory Research·Judith M SonderBernard Mj Uitdehaag
Sep 28, 2017·Plastic and Reconstructive Surgery·Elizabeth J VolpicelliJustine C Lee
Feb 28, 2018·Acta Paediatrica·Britt Frisk PadosJinhee Park
Apr 7, 2018·Autism Research : Official Journal of the International Society for Autism Research·Carla A MazefskyPaul A Pilkonis
Sep 1, 2017·Journal of Pediatric Hematology/oncology·David K BuchbinderLari Wenzel
Jan 20, 2018·Pain Research & Management : the Journal of the Canadian Pain Society = Journal De La Société Canadienne Pour Le Traitement De La Douleur·Maria PavlovaMelanie Noel
Nov 11, 2016·Archives of Disease in Childhood·L HavermanR J Klaassen
Mar 1, 2018·Journal of Pediatric Psychology·Katherine B BevansChristopher B Forrest
Aug 7, 2018·The Journal of School Nursing : the Official Publication of the National Association of School Nurses·Chanhee KimChang Gi Park
Aug 8, 2018·Hand : Official Journal of the American Association for Hand Surgery·William D GerullRyan P Calfee
Oct 4, 2018·Scandinavian Journal of Occupational Therapy·Jessica M Kramer, Ariel E Schwartz
May 29, 2018·Arthritis Care & Research·Sheila T Angeles-HanUNKNOWN Juvenile Idiopathic Arthritis Disease-Specific and Uveitis Subcommittee of the Childhood Arthritis Rheumatology and Research
Sep 24, 2019·The Journal of Asthma : Official Journal of the Association for the Care of Asthma·Stephen J TeachRandi Streisand
Jul 17, 2019·The Journal of Rheumatology·Lisa BuckleyJon M Burnham
Feb 26, 2020·Plastic and Reconstructive Surgery·Fransia S De LeonJustine C Lee
Jan 24, 2020·Nursing Research·Jacqueline VaughnNirmish Shah
Mar 11, 2020·Autism Research : Official Journal of the International Society for Autism Research·Laura Graham HolmesJudith S Miller
Nov 27, 2019·Journal of Pediatric Psychology·Samantha A Barry-MenkhausLeslie A Soyka
May 2, 2020·International Journal of Epidemiology·Charlie RiouxTodd D Little

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KIDSCREEN Parent - Proxy 52
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