Development of a Tool to Measure the Dyadic Process of Shared Decision Making in Young Children: The Making Decisions for Kids (MADE for Kids) Survey

Abstract

Background

Incorporating clinician and patient perspectives in the measurement of shared decision making (SDM) is aligned with SDM’s inherently dyadic nature. There are no tools measuring SDM in pediatrics from multiple perspectives. The objective of this study was to develop a tool to measure SDM from the perspectives of both clinicians and parents of young children.

Design

We used a stepwise iterative approach to tool development beginning with de novo item generation and followed by augmentation of the item pool by adapting items from existing instruments. After the study team removed redundant items, 3 parents and 3 SDM experts rated the remaining items for their ability to capture SDM in pediatrics; items with the lowest mean ratings were removed. To assess the preliminary tool’s face validity, usability, and item understandability, we pretested it, revising it iteratively, with sequential cohorts of English-speaking parents and clinicians from 2 US children’s hospitals.

Results

We generated an initial list of 28 items for the parent and clinician versions of the tool, which we reduced to 20 items after preliminary review. After review by parents and SDM experts, we cut 9 items and added 1 additional item for a total of 12 items. We pretested the preliminary tool with 31 clinicians and 30 parents across 3 sequential cohorts. The final tool contained 12 items and an optional free-text item.

Limitations

All participants were English speaking, limiting its generalizability.

Conclusions

We have developed a usable preliminary tool for measuring the dyadic process of SDM in pediatrics.

Implications

This tool represents an important first step toward addressing the measurement of SDM in pediatrics from multiple perspectives.

Highlights

In this study, we have developed the first shared decision making (SDM) tool specifically for use with parents of young children.

Although further study is needed to determine the psychometric properties of this tool, it has the potential to address an important gap in our ability to measure SDM in pediatrics from multiple perspectives.

Keywords

shared decision-making pediatrics doctor-patient communication

Get full access to this article

View all access options for this article.

References

Merchant

Dickert

Jr Howard

. Mandatory shared decision making by the Centers for medicare & Medicaid Services for cardiovascular procedures and other tests. JAMA. 2018;320(7):641–2. DOI:10.1001/jama.2018.6617

Spatz

Krumholz

Moulton

. Prime time for shared decision making. JAMA. 2017;317(13):1309–10. DOI:10.1001/jama.2017.0616

Legare

Witteman

. Shared decision making: examining key elements and barriers to adoption into routine clinical practice. Health Aff (Millwood). 2013;32(2):276–84. DOI:10.1377/hlthaff.2012.1078

Scholl

Koelewijn-van Loon

Sepucha

, et al. Measurement of shared decision making—a review of instruments. Z Evid Fortbild Qual Gesundhwes. 2011;105(4):313–24. DOI:10.1016/j.zefq.2011.04.012

Gartner

Bomhof-Roordink

Smith

Scholl

Stiggelbout

Pieterse

. The quality of instruments to assess the process of shared decision making: a systematic review. PLoS One. 2018;13(2):e0191747. DOI:10.1371/journal.pone.0191747

Geiger

Kasper

. Of blind men and elephants: suggesting SDM-MASS as a compound measure for shared decision making integrating patient, physician and observer views. Z Evid Fortbild Qual Gesundhwes. 2012;106(4):284–9. DOI:10.1016/j.zefq.2012.03.020

Melbourne

Sinclair

Durand

Legare

Elwyn

. Developing a dyadic OPTION scale to measure perceptions of shared decision making. Patient Educ Couns. 2010;78(2):177–83. DOI:10.1016/j.pec.2009.07.009

Melbourne

Roberts

Durand

Newcombe

Legare

Elwyn

. Dyadic OPTION: measuring perceptions of shared decision-making in practice. Patient Educ Couns. 2011;83(1):55–7. DOI:10.1016/j.pec.2010.04.019

Legare

Elwyn

Fishbein

, et al. Translating shared decision-making into health care clinical practices: proof of concepts. Implement Sci. 2008;3:2. DOI:10.1186/1748-5908-3-2

10.

Legare

Turcotte

Robitaille

, et al. Some but not all dyadic measures in shared decision making research have satisfactory psychometric properties. J Clin Epidemiol. 2012;65(12):1310–20. DOI: 10.1016/j.jclinepi.2012.06.019

11.

Kriston

Harter

Scholl

. A latent variable framework for modeling dyadic measures in research on shared decision-making. Z Evid Fortbild Qual Gesundhwes. 2012;106(4):253–63. DOI: 10.1016/j.zefq.2012.03.021

12.

Kasper

Hoffmann

Heesen

Kopke

Geiger

. MAPPIN’SDM—the multifocal approach to sharing in shared decision making. PLoS One. 2012;7(4):e34849. DOI:10.1371/journal.pone.0034849

13.

Fiks

Jimenez

. The promise of shared decision-making in paediatrics. Acta Paediatrica. 2010;99(10):1464–6. DOI:10.1111/j.1651-2227.2010.01978.x

14.

Opel

. A push for progress with shared decision-making in pediatrics. Pediatrics. 2017;139(2):e20162526. DOI:10.1542/peds.2016-2526

15.

Weiss

Clark

Heike

, et al. Gaps in the implementation of shared decision-making: illustrative cases. Pediatrics. 2019;143(3):e20183055. DOI:10.1542/peds.2018-3055

16.

Malone

Biggar

Javadpour

Edworthy

Sheaf

Coyne

. Interventions for promoting participation in shared decision-making for children and adolescents with cystic fibrosis. Cochrane Database Syst Rev. 2019;5:CD012578. DOI:10.1002/14651858.CD012578.pub2

17.

Robertson

Cohen

Signorelli

Grant

Fardell

Wakefield

. What instruments should we use to assess paediatric decision-making interventions? A narrative review. J Child Health Care. 2020;24(3):458–72. DOI:10.1177/1367493519869717

18.

Valentine

Lipstein

Cosenza

Barry

Sepucha

. Pediatric Caregiver version of the Shared Decision Making Process Scale: validity and reliability for ADHD treatment decisions. Acad Pediatr. 2022;22(8):1503–9. DOI:10.1016/j.acap.2022.07.014

19.

Hurley

Bradley-Ewing

Bickford

, et al. Measuring shared decision-making in the pediatric outpatient setting: psychometric performance of the SDM-Q-9 and CollaboRATE among English and Spanish speaking parents in the US Midwest. Patient Educ Couns. 2019;102(4):742–8. DOI:10.1016/j.pec.2018.10.015

20.

Opel

. A 4-step framework for shared decision-making in pediatrics. Pediatrics. 2018;142(suppl 3):S149–56. DOI:10.1542/peds.2018-0516E

21.

Opel

Dundas

, et al. Validation of a process for shared decision-making in pediatrics. Acad Pediatr. 2023;23(8):1588–97. DOI:10.1016/j.acap.2023.01.007

22.

DeVellis

Thorpe

. Scale Development: Theory and Applications. 5th ed.

Thousand Oaks (CA)

Sage; 2022.

23.

Guyatt

Feeny

Patrick

. Measuring health-related quality of life. Ann Intern Med. 1993;118(8):622–9. DOI:10.7326/0003-4819-118-8-199304150-00009

24.

Terwee

Bot

de Boer

, et al. Quality criteria were proposed for measurement properties of health status questionnaires. J Clin Epidemiol. 2007;60(1):34–42. DOI:10.1016/j.jclinepi.2006.03.012

25.

Sudman

Bradburn

. Asking Questions. 1st ed. San Francisco: Jossey-Bass Social and Behavioral Science Series; 1982.

26.

Agency for Healthcare Research and Quality. Health literacy universal precautions toolkit. 2nd ed. Available from: https://www.ahrq.gov/health-literacy/improve/precautions/toolkit.html. [Accessed 16 November, 2021].

27.

Groves

. Survey Methodology. Wiley Series in Survey Methodology. New York: John Wiley; 2004.

28.

Williams

Edwards

Wood

, et al. Ability of observer and self-report measures to capture shared decision-making in clinical practice in the UK: a mixed-methods study. BMJ Open. 2019;9(8):e029485. DOI:10.1136/bmjopen-2019-029485

29.

Kriston

Scholl

Holzel

Simon

Loh

Harter

. The 9-item Shared Decision Making Questionnaire (SDM-Q-9). Development and psychometric properties in a primary care sample. Patient Educ Couns. 2010;80(1):94–9. DOI:10.1016/j.pec.2009.09.034

30.

Scholl

Kriston

Dirmaier

Buchholz

Harter

. Development and psychometric properties of the Shared Decision Making Questionnaire—physician version (SDM-Q-Doc). Patient Educ Couns. 2012;88(2):284–90. DOI:10.1016/j.pec.2012.03.005

31.

Lee

Stucky

Lee

Rozier

Bender

. Short assessment of health literacy-Spanish and English: a comparable test of health literacy for Spanish and English speakers. Health Serv Res. 2010;45(4):1105–20. DOI:10.1111/j.1475-6773.2010.01119.x

32.

Fowler

Mangione

. Standardized Survey Interviewing; Minimizing Interviewer-Related Error. Applied Social Research Methods Series. Thousand Oaks (CA): Sage Publications; 1990.

33.

Elwyn

Hutchings

Edwards

, et al. The OPTION scale: measuring the extent that clinicians involve patients in decision-making tasks. Health Expect. 2005;8(1):34–42. DOI:10.1111/j.1369-7625.2004.00311.x

34.

Edwards

Elwyn

Hood

, et al. The development of COMRADE—a patient-based outcome measure to evaluate the effectiveness of risk communication and treatment decision making in consultations. Patient Educ Couns. 2003;50(3):311–22. DOI:10.1016/s0738-3991(03)00055-7

35.

Vedam

Stoll

Martin

, et al. The Mother’s Autonomy in Decision Making (MADM) scale: patient-led development and psychometric testing of a new instrument to evaluate experience of maternity care. PLoS One. 2017;12(2):e0171804. DOI:10.1371/journal.pone.0171804

36.

Shields

Franks

Fiscella

Meldrum

Epstein

. Rochester Participatory Decision-Making Scale (RPAD): reliability and validity. Ann Fam Med. 2005;3(5):436–42. DOI:10.1370/afm.305

37.

Burleson

Rack

. Constructivism: explaining individual differences in communication skill. In: Baxter

Braithwaite

, eds. Engaging Theories in Interpersonal Communication. Thousand Oaks (CA): Sage; 2008. p 51–63.

38.

Bomhof-Roordink

Gartner

Stiggelbout

Pieterse

. Key components of shared decision making models: a systematic review. BMJ Open. 2019;9(12):e031763. DOI:10.1136/bmjopen-2019-031763

Supplementary Material

Please find the following supplemental material available below.

For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.

For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.

0.00 MB

0.03 MB