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Reducing complexity of patient decision aids for community-based older adults with dementia and their caregivers: multiple case study of Decision Boxes
  1. Gabriel Bilodeau1,
  2. Holly Witteman2,
  3. France Légaré3,4,
  4. Juliette Lafontaine-Bruneau5,
  5. Philippe Voyer6,
  6. Edeltraut Kröger7,
  7. Marie-Claude Tremblay1,4,
  8. Anik M C Giguere1,8
  1. 1 Laval University Research Centre on Primary Care and Services, Centre integre universitaire de sante et de services sociaux de la Capitale-Nationale, Quebec City, Quebec, Canada
  2. 2 Laval University, Family and Emergency Medicine, Quebec City, Quebec, Canada
  3. 3 Knowledge Transfer and Health Technology Assessment Research Group, Research Center of Centre hospitalier universitaire de Québec (CRCHUQ), Quebec City, Quebec, Canada
  4. 4 Family Medicine and Emergency Medicine, Universite Laval Faculte de medecine, Quebec City, Quebec, Canada
  5. 5 Caregiver partner, Quebec City, Quebec, Canada
  6. 6 Faculte des Sciences Infirmieres de l’Universite Laval, Quebec City, Quebec, Canada
  7. 7 Laval University Research Center on Primary Care and Services, Centre integre universitaire de sante et de services sociaux de la Capitale-Nationale, Quebec City, Quebec, Canada
  8. 8 Family Medicine and Emergency Medicine, Laval University, Quebec City, Quebec, Canada
  1. Correspondence to Dr Anik M C Giguere; anik.giguere{at}fmed.ulaval.ca

Abstract

Objectives To identify patient decision aids’ features to limit their complexity for older adults with dementia and their family caregivers.

Design Mixed method, multiple case study within a user-centred design (UCD) approach.

Setting Community-based healthcare in the province of Quebec in Canada.

Participants 23 older persons (aged 65+ years) with dementia and their 27 family caregivers.

Results During three UCD evaluation-modification rounds, participants identified strengths and weaknesses of the patient decision aids’ content and visual design that influenced their complexity. Weaknesses of content included a lack of understanding of the decision aids’ purpose and target audience, missing information, irrelevant content and issues with terminology and sentence structure. Weaknesses of visual design included critics about the decision aids’ general layout (density, length, navigation) and their lack of pictures. In response, the design team implemented a series of practical features and design strategies, comprising: a clear expression of the patient decision aids' purpose through simple text, picture and personal stories; systematic and frequent use of pictograms illustrating key points and helping structure patient decision aids' general layout; a glossary; removal of scientific references from the main document; personal stories to clarify more difficult concepts; a contact section to facilitate implementation of the selected option; GRADE ratings to convey the quality of the evidence; a values clarification exercise formatted as a checklist and presented at the beginning of the document to streamline navigation; involvement of a panel of patient/caregiver partners to guide expression of patient priorities; editing of the text to a sixth grade reading level; UCD process to optimise comprehensiveness and relevance of content and training of patients/caregivers in shared decision-making.

Conclusions The revised template for patient decision aids is designed to meet the needs of adults living with dementia and their caregivers better, which may translate into fewer evaluation-modification rounds.

  • dementia
  • primary care
  • health services research
  • aging
  • communication and information technology
  • shared decision making

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

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Footnotes

  • Contributors AMCG designed this study with JL-B, PV, EK, HW and FL. AMCG and GB collected, analysed and interpreted the data. JL-B, PV, EK, AMCG and GB critically revised and coauthored one or several DBoxes studied herein. AMCG, GB, HW and M-CT participated in the initial drafting of the manuscript. All authors drafted, critically revised and gave final approval of the article. AMCG acts as guarantor.

  • Funding This work was supported by the Ministère de l’Économie, de l’Innovation et de l’Exportation du Québec, grant #2014-2015-PSVT2-31494, and by the Société de Valorisation SOVAR, Quebec city, Canada.

  • Disclaimer The study funders played no role in the study design, collection, analysis and interpretation of data, writing of the report or in the decision to submit the article for publication.

  • Competing interests None declared.

  • Ethics approval This study was approved by the Comité Central d’Éthique de la Recherche of the Ministère de la Santé et des Services Sociaux (#15-16-05).

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data sharing statement No additional data are available.

  • Patient consent for publication Not required.

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