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Semin Speech Lang 2017; 38(03): 184-190
DOI: 10.1055/s-0037-1602837
Review Article
Thieme Medical Publishers 333 Seventh Avenue, New York, NY 10001, USA.

Toward a Measure of Communicative Participation for Children with Developmental Speech Disorders

Meghan Darling-White
1   Department of Speech, Language, and Hearing Sciences at University of Arizona, Tucson, Arizona
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Publication History

Publication Date:
15 June 2017 (online)

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Abstract

The general lack of assessment tools that adequately measure communicative participation has been well documented in the adult literature. However, there has been no systematic attempt to document the availability of these assessment tools in pediatric populations. The purpose of this literature review was to investigate the availability of patient-reported outcome (PRO) tools that measure communicative participation in children. Results indicate that there are no such tools that measure communicative participation in children at this time. In an effort to inspire researchers to develop these tools, the following guidelines for the development of pediatric PRO tools are discussed: (1) consider age-based criteria for tool development and administration, (2) design and format the tool specifically for the target age group, (3) establish content validity, (4) determine whether a parent proxy-report tool is necessary, and (5) consider cross-cultural issues.

Keywords

Communicative participation - children - patient-reported outcomes - review

Financial Disclosure

The author is a faculty member at the University of Arizona for which she receives a salary. The content is solely the responsibility of the author and does not necessarily represent the official views of the University of Arizona.


 

  • References

  • 1 World Health Organization. International Classification of Functioning. Disability, and Health: ICF. Geneva, Switzerland; 2001
    PubMedGoogle Scholar
  • 2 American Speech-Language-Hearing Association. Scope of Practice in Speech-Language Pathology. Rockville, MD: American Speech-Language-Hearing Association; 2016
    Google Scholar
  • 3 Eadie TL, Yorkston KM, Klasner ER. , et al. Measuring communicative participation: a review of self-report instruments in speech-language pathology. Am J Speech Lang Pathol 2006; 15 (04) 307-320
    CrossrefPubMedGoogle Scholar
  • 4 Torrence JM, Baylor CR, Yorkston KM, Spencer KA. Addressing communicative participation in treatment planning for adults: a survey of U.S. speech-language pathologists. Am J Speech Lang Pathol 2016; 25 (03) 355-370
    CrossrefPubMedGoogle Scholar
  • 5 Miller N, Deane KHO, Jones D, Noble E, Gibb C. National survey of speech and language therapy provision for people with Parkinson's disease in the United Kingdom: therapists' practices. Int J Lang Commun Disord 2011; 46 (02) 189-201
    PubMedGoogle Scholar
  • 6 Verna A, Davidson B, Rose T. Speech-language pathology services for people with aphasia: a survey of current practice in Australia. Int J Speech-Language Pathol 2009; 11 (03) 191-205
    PubMedGoogle Scholar
  • 7 Collis J, Bloch S. Survey of UK speech and language therapists' assessment and treatment practices for people with progressive dysarthria. Int J Lang Commun Disord 2012; 47 (06) 725-737
    CrossrefPubMedGoogle Scholar
  • 8 Simmons-Mackie N, Threats TT, Kagan A. Outcome assessment in aphasia: a survey. J Commun Disord 2005; 38 (01) 1-27
    CrossrefPubMedGoogle Scholar
  • 9 McLeod S, Threats TT. The ICF-CY and children with communication disabilities. Int J Speech-Language Pathol 2008; 10 (1–2): 92-109
    PubMedGoogle Scholar
  • 10 Baylor C, Yorkston K, Eadie T, Kim J, Chung H, Amtmann D. The Communicative Participation Item Bank (CPIB): item bank calibration and development of a disorder-generic short form. J Speech Lang Hear Res 2013; 56 (04) 1190-1208
    CrossrefPubMedGoogle Scholar
  • 11 Baylor CR, Yorkston KM, Eadie TL, Miller RM, Amtmann D. Developing the communicative participation item bank: Rasch analysis results from a spasmodic dysphonia sample. J Speech Lang Hear Res 2009; 52 (05) 1302-1320
    CrossrefPubMedGoogle Scholar
  • 12 Yorkston KM, Baylor CR, Dietz J. , et al. Developing a scale of communicative participation: a cognitive interviewing study. Disabil Rehabil 2008; 30 (06) 425-433
    CrossrefPubMedGoogle Scholar
  • 13 Food and Drug Administration. Guidance for industry: patient-reported outcome measures: use in medical product development to support labeling claims. 2009 . Available at: www.fda.gov/downloads/Drugs/Guidances/UCM193282.pdf . Accessed March 27, 2017
    PubMedGoogle Scholar
  • 14 Varni JW, Limbers CA, Burwinkle TM. How young can children reliably and validly self-report their health-related quality of life? An analysis of 8,591 children across age subgroups with the PedsQL 4.0 Generic Core Scales. Health Qual Life Outcomes 2007; 5 (01) 1-13
    CrossrefPubMedGoogle Scholar
  • 15 Young NL, Yoshida KK, Williams JI, Bombardier C, Wright JG. The role of children in reporting their physical disability. Arch Phys Med Rehabil 1995; 76 (10) 913-918
    CrossrefPubMedGoogle Scholar
  • 16 Eiser C, Morse R. Can parents rate their child's health-related quality of life? Results of a systematic review. Qual Life Res 2001; 10 (04) 347-357
    CrossrefPubMedGoogle Scholar
  • 17 Matsumoto H, Vitale MG, Hyman JE, Roye Jr DP. Can parents rate their children's quality of life? Perspectives on pediatric orthopedic outcomes. J Pediatr Orthop B 2011; 20 (03) 184-190
    CrossrefPubMedGoogle Scholar
  • 18 Varni JW, Seid M, Rode CA. The PedsQL: measurement model for the pediatric quality of life inventory. Med Care 1999; 37 (02) 126-139
    CrossrefPubMedGoogle Scholar
  • 19 Varni JW, Seid M, Kurtin PS. PedsQL 4.0: reliability and validity of the Pediatric Quality of Life Inventory version 4.0 generic core scales in healthy and patient populations. Med Care 2001; 39 (08) 800-812
    CrossrefPubMedGoogle Scholar
  • 20 Eadie TL, Lamvik K, Baylor CR, Yorkston KM, Kim J, Amtmann D. Communicative participation and quality of life in head and neck cancer. Ann Otol Rhinol Laryngol 2014; 123 (04) 257-264
    CrossrefPubMedGoogle Scholar
  • 21 Reeve BB, Wyrwich KW, Wu AW. , et al. ISOQOL recommends minimum standards for patient-reported outcome measures used in patient-centered outcomes and comparative effectiveness research. Qual Life Res 2013; 22 (08) 1889-1905
    CrossrefPubMedGoogle Scholar
  • 22 Matza LS, Patrick DL, Riley AW. , et al. Pediatric patient-reported outcome instruments for research to support medical product labeling: report of the ISPOR PRO good research practices for the assessment of children and adolescents task force. Value Health 2013; 16 (04) 461-479
    CrossrefPubMedGoogle Scholar
  • 23 Grange A, Bekker H, Noyes J, Langley P. Adequacy of health-related quality of life measures in children under 5 years old: systematic review. J Adv Nurs 2007; 59 (03) 197-220
    CrossrefPubMedGoogle Scholar
  • 24 Amtmann D, Cook KF, Johnson KL, Cella D. The PROMIS initiative: involvement of rehabilitation stakeholders in development and examples of applications in rehabilitation research. Arch Phys Med Rehabil 2011; 92 (10, Suppl): S12-S19
    CrossrefPubMedGoogle Scholar
  • 25 Irwin DE, Varni JW, Yeatts K, DeWalt DA. Cognitive interviewing methodology in the development of a pediatric item bank: a patient reported outcomes measurement information system (PROMIS) study. Health Qual Life Outcomes 2009; 7 (01) 3
    CrossrefPubMedGoogle Scholar
  • 26 Varni JW, Curtis BH, Abetz LN, Lasch KE, Piault EC, Zeytoonjian AA. Content validity of the PedsQL™ 3.2 Diabetes Module in newly diagnosed patients with type 1 diabetes mellitus ages 8–45. Qual Life Res 2013; 22 (08) 2169-2181
    CrossrefPubMedGoogle Scholar
  • 27 Rothman M, Burke L, Erickson P, Leidy NK, Patrick DL, Petrie CD. Use of existing patient-reported outcome (PRO) instruments and their modification: the ISPOR Good Research Practices for Evaluating and Documenting Content Validity for the Use of Existing Instruments and Their Modification PRO Task Force Report. Value Health 2009; 12 (08) 1075-1083
    CrossrefPubMedGoogle Scholar
  • 28 Patrick DL, Burke LB, Gwaltney CJ. , et al. Content validity—establishing and reporting the evidence in newly developed patient-reported outcomes (PRO) instruments for medical product evaluation: ISPOR PRO good research practices task force report: part 1—eliciting concepts for a new PRO instrument. Value Health 2011; 14 (08) 967-977
    CrossrefPubMedGoogle Scholar
  • 29 Patrick DL, Burke LB, Gwaltney CJ. , et al. Content validity—establishing and reporting the evidence in newly developed patient-reported outcomes (PRO) instruments for medical product evaluation: ISPOR PRO Good Research Practices Task Force report: part 2—assessing respondent understanding. Value Health 2011; 14 (08) 978-988
    CrossrefPubMedGoogle Scholar
  • 30 Varni JW, Limbers CA, Burwinkle TM. Parent proxy-report of their children's health-related quality of life: an analysis of 13,878 parents' reliability and validity across age subgroups using the PedsQL 4.0 Generic Core Scales. Health Qual Life Outcomes 2007; 5: 2
    CrossrefPubMedGoogle Scholar