Literature DB >> 24182861

Outcomes research in childhood autoimmune diseases.

Esi Morgan DeWitt1.   

Abstract

This article provides an introduction to key aspects of outcomes research in pediatric rheumatology, focusing on arthritis. Patient-centered outcomes research addresses questions of interest to multiple stakeholders in order to guide the best health care decisions suited to a particular patient's circumstances and preferences. Discussion includes the importance of maintaining high-quality longitudinal patient registries and use of valid clinical and patient-reported outcome measures. Rapid, reliable translation of research on best practices into clinical care, as facilitated by quality improvement learning networks, leads to timely and meaningful improvement in patient outcomes.
Copyright © 2013 Elsevier Inc. All rights reserved.

Entities:  

Keywords:  Health services research; Outcomes research; Patient outcome assessment; Pediatrics; Quality improvement; Registries; Rheumatology

Mesh:

Year:  2013        PMID: 24182861      PMCID: PMC3937380          DOI: 10.1016/j.rdc.2013.07.004

Source DB:  PubMed          Journal:  Rheum Dis Clin North Am        ISSN: 0889-857X            Impact factor:   2.670


  40 in total

1.  Consensus treatments for moderate juvenile dermatomyositis: beyond the first two months. Results of the second Childhood Arthritis and Rheumatology Research Alliance consensus conference.

Authors:  Adam M Huber; Angela B Robinson; Ann M Reed; Leslie Abramson; Sharon Bout-Tabaku; Ruy Carrasco; Megan Curran; Brian M Feldman; Harry Gewanter; Thomas Griffin; Kathleen Haines; Mark F Hoeltzel; Josephine Isgro; Philip Kahn; Bianca Lang; Patti Lawler; Bracha Shaham; Heinrike Schmeling; Rosie Scuccimarri; Michael Shishov; Elizabeth Stringer; Julie Wohrley; Norman T Ilowite; Carol Wallace
Journal:  Arthritis Care Res (Hoboken)       Date:  2012-04       Impact factor: 4.794

2.  Evidence on the Chronic Care Model in the new millennium.

Authors:  Katie Coleman; Brian T Austin; Cindy Brach; Edward H Wagner
Journal:  Health Aff (Millwood)       Date:  2009 Jan-Feb       Impact factor: 6.301

3.  The quality of ambulatory care delivered to children in the United States.

Authors:  Rita Mangione-Smith; Alison H DeCristofaro; Claude M Setodji; Joan Keesey; David J Klein; John L Adams; Mark A Schuster; Elizabeth A McGlynn
Journal:  N Engl J Med       Date:  2007-10-11       Impact factor: 91.245

Review 4.  Networking in paediatrics: the example of the Paediatric Rheumatology International Trials Organisation (PRINTO).

Authors:  Nicolino Ruperto; Alberto Martini
Journal:  Arch Dis Child       Date:  2011-02-12       Impact factor: 3.791

5.  Commentary: the patient-reported outcome measurement information system (PROMIS®) for children and youth: application to pediatric psychology.

Authors:  Christopher B Forrest; Katherine B Bevans; Carole Tucker; Anne W Riley; Ulrike Ravens-Sieberer; William Gardner; Kathleen Pajer
Journal:  J Pediatr Psychol       Date:  2012-02-23

6.  Disclosure and self-report of emotional, social, and physical health in children and adolescents with chronic pain--a qualitative study of PROMIS pediatric measures.

Authors:  C Jeff Jacobson; Jennifer E Farrell; Susmita Kashikar-Zuck; Michael Seid; Emily Verkamp; Esi Morgan Dewitt
Journal:  J Pediatr Psychol       Date:  2012-09-30

7.  Preliminary definition of improvement in juvenile arthritis.

Authors:  E H Giannini; N Ruperto; A Ravelli; D J Lovell; D T Felson; A Martini
Journal:  Arthritis Rheum       Date:  1997-07

8.  Development and validation of a composite disease activity score for juvenile idiopathic arthritis.

Authors:  Alessandro Consolaro; Nicolino Ruperto; Anna Bazso; Angela Pistorio; Silvia Magni-Manzoni; Giovanni Filocamo; Clara Malattia; Stefania Viola; Alberto Martini; Angelo Ravelli
Journal:  Arthritis Rheum       Date:  2009-05-15

Review 9.  Measures of health status and quality of life in juvenile rheumatoid arthritis: Pediatric Quality of Life Inventory (PedsQL) Rheumatology Module 3.0, Juvenile Arthritis Quality of Life Questionnaire (JAQQ), Paediatric Rheumatology Quality of Life Scale (PRQL), and Childhood Arthritis Health Profile (CAHP).

Authors:  A C Carle; E Morgan Dewitt; M Seid
Journal:  Arthritis Care Res (Hoboken)       Date:  2011-11       Impact factor: 4.794

10.  An i2b2-based, generalizable, open source, self-scaling chronic disease registry.

Authors:  Marc D Natter; Justin Quan; David M Ortiz; Athos Bousvaros; Norman T Ilowite; Christi J Inman; Keith Marsolo; Andrew J McMurry; Christy I Sandborg; Laura E Schanberg; Carol A Wallace; Robert W Warren; Griffin M Weber; Kenneth D Mandl
Journal:  J Am Med Inform Assoc       Date:  2012-06-25       Impact factor: 4.497

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  2 in total

Review 1.  Improving care delivery and outcomes in pediatric rheumatic diseases.

Authors:  Julia G Harris; Catherine A Bingham; Esi M Morgan
Journal:  Curr Opin Rheumatol       Date:  2016-03       Impact factor: 5.006

Review 2.  Using Patient-Reported Outcome Measures to Capture the Patient's Voice in Research and Care of Juvenile Idiopathic Arthritis.

Authors:  Aimee O Hersh; Parissa K Salimian; Elissa R Weitzman
Journal:  Rheum Dis Clin North Am       Date:  2016-03-18       Impact factor: 2.670

  2 in total

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