Literature DB >> 27133493

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

Aimee O Hersh1, Parissa K Salimian2, Elissa R Weitzman3.   

Abstract

Patient-reported outcome (PRO) measures provide a valuable window into how patients with juvenile idiopathic arthritis and their parents perceive their functioning, quality of life, and medication side effects in the context of their disease and treatment. Momentum behind adoption of PRO measures is increasing as these patient-relevant tools capture information pertinent to taking a patient-centered approach to health care and research. This article reviews the clinical and research utility of obtaining PROs across domains applicable to the experience of juvenile idiopathic arthritis and summarizes available self-report and parent-proxy PRO measures. Current challenges and limitations of PRO usage are discussed.
Copyright © 2016 Elsevier Inc. All rights reserved.

Entities:  

Keywords:  Chronic disease; Comparative effectiveness research; Health outcomes; Juvenile arthritis; Patient-centered care; Pediatric rheumatology; Quality of life; Self-report

Mesh：

Substances：

Year:  2016        PMID： 27133493      PMCID： PMC4853816          DOI： 10.1016/j.rdc.2016.01.004

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


  80 in total

1.  The relationship of daily mood and stressful events to symptoms in juvenile rheumatic disease.

Authors:  L E Schanberg; M J Sandstrom; K Starr; K M Gil; J C Lefebvre; F J Keefe; G Affleck; H Tennen
Journal:  Arthritis Care Res       Date:  2000-02

2.  Health-related quality of life of patients with juvenile idiopathic arthritis coming from 3 different geographic areas. The PRINTO multinational quality of life cohort study.

Authors:  R Gutiérrez-Suárez; A Pistorio; A Cespedes Cruz; X Norambuena; B Flato; I Rumba; M Harjacek; S Nielsen; G Susic; D Mihaylova; C Huemer; J Melo-Gomes; B Andersson-Gare; Z Balogh; C De Cunto; R Vesely; K Pagava; A M Romicka; R Burgos-Vargas; A Martini; N Ruperto
Journal:  Rheumatology (Oxford)       Date:  2006-07-28       Impact factor: 7.580

3.  Assessing pain intensity in children with chronic pain: convergent and discriminant validity of the 0 to 10 numerical rating scale in clinical practice.

Authors:  Danielle Ruskin; Chitra Lalloo; Khushnuma Amaria; Jennifer N Stinson; Erika Kewley; Fiona Campbell; Stephen C Brown; Michael Jeavons; Patricia A McGrath
Journal:  Pain Res Manag       Date:  2014-04-07       Impact factor: 3.037

4.  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

5.  Pain experience and pain coping strategies in children with juvenile idiopathic arthritis.

Authors:  M Thastum; R Zachariae; T Herlin
Journal:  J Rheumatol       Date:  2001-05       Impact factor: 4.666

6.  The PedsQL in pediatric rheumatology: reliability, validity, and responsiveness of the Pediatric Quality of Life Inventory Generic Core Scales and Rheumatology Module.

Authors:  James W Varni; Michael Seid; Tara Smith Knight; Tasha Burwinkle; Joy Brown; Ilona S Szer
Journal:  Arthritis Rheum       Date:  2002-03

7.  PROMIS(®) pediatric self-report scales distinguish subgroups of children within and across six common pediatric chronic health conditions.

Authors:  Darren A DeWalt; Heather E Gross; Debbie S Gipson; David T Selewski; Esi Morgan DeWitt; Carlton D Dampier; Pamela S Hinds; I-Chan Huang; David Thissen; James W Varni
Journal:  Qual Life Res       Date:  2015-02-26       Impact factor: 4.147

8.  Pediatric pain measurement using a visual analogue scale: a comparison of two teaching methods.

Authors:  Brenda J Shields; Daniel M Cohen; Cynthia Harbeck-Weber; Jean D Powers; Gary A Smith
Journal:  Clin Pediatr (Phila)       Date:  2003-04       Impact factor: 1.168

9.  An observational study of patient versus parental perceptions of health-related quality of life in children and adolescents with a chronic pain condition: who should the clinician believe?

Authors:  Thomas R Vetter; Cynthia L Bridgewater; Gerald McGwin
Journal:  Health Qual Life Outcomes       Date:  2012-07-23       Impact factor: 3.186

10.  Agreement between physicians and parents in rating functional ability of children with juvenile idiopathic arthritis.

Authors:  Elena Palmisani; Nicoletta Solari; Angela Pistorio; Nicolino Ruperto; Clara Malattia; Stefania Viola; Antonella Buoncompagni; Anna Loy; Alberto Martini; Angelo Ravelli
Journal:  Pediatr Rheumatol Online J       Date:  2007-12-11       Impact factor: 3.054
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  6 in total

Review 1.  Assessing Patient-Reported Outcomes in Pediatric Rheumatic Diseases: Considerations and Future Directions.

Authors:  Christina K Zigler; Rachel L Randell; Bryce B Reeve
Journal:  Rheum Dis Clin North Am       Date:  2022-02       Impact factor: 2.032

2.  Co-design of an Electronic Dashboard to Support the Coproduction of Care in Pediatric Rheumatic Disease: Human-Centered Design and Usability Testing.

Authors:  Alysha Taxter; Lisa Johnson; Doreen Tabussi; Yukiko Kimura; Brittany Donaldson; Erica Lawson; Vincent Del Gaizo; Daniela Vitelli; Aricca Van Citters; Eugene Nelson; Tzielan Lee; Corinne Pinter
Journal:  J Particip Med       Date:  2022-04-22

3.  Mental health and adjustment to juvenile idiopathic arthritis: Level of agreement between parent and adolescent reports according to Strengths and Difficulties Questionnaire and Adolescent Outcomes Questionnaire.

Authors:  Ewa Misterska; Dominika Kaminiarczyk-Pyzałka; Karolina Adamczak; Katarzyna A Adamczyk; Marek Niedziela; Maciej Głowacki; Jakub Głowacki
Journal:  PLoS One       Date:  2017-03-10       Impact factor: 3.240

4.  Comparison of a Mobile Health Electronic Visual Analog Scale App With a Traditional Paper Visual Analog Scale for Pain Evaluation: Cross-Sectional Observational Study.

Authors:  Alexandra Turnbull; Dean Sculley; Carles Escalona-Marfil; Lluís Riu-Gispert; Jorge Ruiz-Moreno; Xavier Gironès; Andrea Coda
Journal:  J Med Internet Res       Date:  2020-09-17       Impact factor: 5.428

5.  Non-disease specific patient-reported outcome measures of health-related quality of life in juvenile idiopathic arthritis: a systematic review of current research and practice.

Authors:  Justyna Młyńczyk; Paweł Abramowicz; Maciej K Stawicki; Jerzy Konstantynowicz
Journal:  Rheumatol Int       Date:  2021-12-31       Impact factor: 2.631

Review 6.  Emerging Tools to Capture Self-Reported Acute and Chronic Pain Outcome in Children and Adolescents: A Literature Review.

Authors:  Alexandra Turnbull; Dean Sculley; Derek Santos; Mohammed Maarj; Lachlan Chapple; Xavier Gironès; Antoni Fellas; Andrea Coda
Journal:  Med Sci (Basel)       Date:  2022-01-25
  6 in total

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