Developing a multimedia patient-reported outcomes measure for low literacy patients with a human-centered design approach Article Swipe
Chao Long Azad
,
Laura K. Beres
,
Albert W. Wu
,
Allan Fong
,
Aviram M. Giladi
·
YOU?
·
· 2024
· Open Access
·
· DOI: https://doi.org/10.1371/journal.pone.0304351
YOU?
·
· 2024
· Open Access
·
· DOI: https://doi.org/10.1371/journal.pone.0304351
Introduction Almost all patient-reported outcomes measures (PROMs) are text-based, which impedes accurate completion by low and limited literacy patients. Few PROMs are designed or validated to be self-administered, either in clinical or research settings, by patients of all literacy levels. We aimed to adapt the Patient Reported Outcomes Measurement Information System Upper Extremity Short Form (PROMIS-UE) to a multimedia version (mPROMIS-UE) that can be self-administered by hand and upper extremity patients of all literacy levels. Methods Our study in which we applied the Multimedia Adaptation Protocol included seven phases completed in a serial, iterative fashion: planning with our community advisory board; direct observation; discovery interviews with patients, caregivers, and clinic staff; ideation; prototyping; member-checking interviews; and feedback. Direct observations were documented in memos that underwent rapid thematic analysis. Interviews were audio-recorded and documented using analytic memos; a rapid, framework-guided thematic analysis with both inductive and deductive themes was performed. Themes were distilled into design challenges to guide ideation and prototyping that involved our multidisciplinary research team. To assess completeness, credibility, and acceptability we completed additional interviews with member-checking of initial findings and consulted our community advisory board. Results We conducted 12 hours of observations. We interviewed 17 adult English-speaking participants (12 patients, 3 caregivers, 2 staff) of mixed literacy. Our interviews revealed two distinct user personas and three distinct literacy personas; we developed the mPROMIS-UE with these personas in mind. Themes from interviews were distilled into four broad design challenges surrounding literacy, customizability, convenience, and shame. We identified features (audio, animations, icons, avatars, progress indicator, illustrated response scale) that addressed the design challenges. The last 6 interviews included member-checking; participants felt that the themes, design challenges, and corresponding features resonated with them. These features were synthesized into an mPROMIS-UE prototype that underwent rounds of iterative refinement, the last of which was guided by recommendations from our community advisory board. Discussion We successfully adapted the PROMIS-UE to an mPROMIS-UE that addresses the challenges identified by a mixed literacy hand and upper extremity patient cohort. This demonstrates the feasibility of adapting PROMs to multimedia versions. Future research will include back adaptation, usability testing via qualitative evaluation, and psychometric validation of the mPROMIS-UE. A validated mPROMIS-UE will expand clinicians’ and investigators’ ability to capture patient-reported outcomes in mixed literacy populations.
Related Topics
Concepts
Thematic analysis
Health literacy
Literacy
Medical education
Documentation
Medicine
Credibility
Psychology
Persona
Applied psychology
Nursing
Qualitative research
Computer science
Pedagogy
Health care
Political science
Human–computer interaction
Social science
Economics
Programming language
Economic growth
Law
Sociology
Metadata
- Type
- article
- Language
- en
- Landing Page
- https://doi.org/10.1371/journal.pone.0304351
- https://journals.plos.org/plosone/article/file?id=10.1371/journal.pone.0304351&type=printable
- OA Status
- gold
- Cited By
- 5
- References
- 55
- Related Works
- 10
- OpenAlex ID
- https://openalex.org/W4399367520
All OpenAlex metadata
Raw OpenAlex JSON
- OpenAlex ID
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https://openalex.org/W4399367520Canonical identifier for this work in OpenAlex
- DOI
-
https://doi.org/10.1371/journal.pone.0304351Digital Object Identifier
- Title
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Developing a multimedia patient-reported outcomes measure for low literacy patients with a human-centered design approachWork title
- Type
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articleOpenAlex work type
- Language
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enPrimary language
- Publication year
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2024Year of publication
- Publication date
-
2024-06-05Full publication date if available
- Authors
-
Chao Long Azad, Laura K. Beres, Albert W. Wu, Allan Fong, Aviram M. GiladiList of authors in order
- Landing page
-
https://doi.org/10.1371/journal.pone.0304351Publisher landing page
- PDF URL
-
https://journals.plos.org/plosone/article/file?id=10.1371/journal.pone.0304351&type=printableDirect link to full text PDF
- Open access
-
YesWhether a free full text is available
- OA status
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goldOpen access status per OpenAlex
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https://journals.plos.org/plosone/article/file?id=10.1371/journal.pone.0304351&type=printableDirect OA link when available
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Thematic analysis, Health literacy, Literacy, Medical education, Documentation, Medicine, Credibility, Psychology, Persona, Applied psychology, Nursing, Qualitative research, Computer science, Pedagogy, Health care, Political science, Human–computer interaction, Social science, Economics, Programming language, Economic growth, Law, SociologyTop concepts (fields/topics) attached by OpenAlex
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5Total citation count in OpenAlex
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2025: 5Per-year citation counts (last 5 years)
- References (count)
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55Number of works referenced by this work
- Related works (count)
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10Other works algorithmically related by OpenAlex
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| abstract_inverted_index.validated | 24, 361 |
| abstract_inverted_index.versions. | 342 |
| abstract_inverted_index.Adaptation | 84 |
| abstract_inverted_index.Discussion | 309 |
| abstract_inverted_index.Interviews | 128 |
| abstract_inverted_index.Multimedia | 83 |
| abstract_inverted_index.additional | 174 |
| abstract_inverted_index.challenges | 154, 239, 321 |
| abstract_inverted_index.completion | 12 |
| abstract_inverted_index.documented | 120, 132 |
| abstract_inverted_index.identified | 247, 322 |
| abstract_inverted_index.indicator, | 254 |
| abstract_inverted_index.interviews | 104, 175, 210, 232, 266 |
| abstract_inverted_index.mPROMIS-UE | 224, 288, 317, 362 |
| abstract_inverted_index.multimedia | 58, 341 |
| abstract_inverted_index.performed. | 148 |
| abstract_inverted_index.validation | 356 |
| abstract_inverted_index.(PROMIS-UE) | 55 |
| abstract_inverted_index.Information | 49 |
| abstract_inverted_index.Measurement | 48 |
| abstract_inverted_index.adaptation, | 348 |
| abstract_inverted_index.animations, | 250 |
| abstract_inverted_index.caregivers, | 107, 203 |
| abstract_inverted_index.challenges, | 275 |
| abstract_inverted_index.challenges. | 262 |
| abstract_inverted_index.evaluation, | 353 |
| abstract_inverted_index.feasibility | 336 |
| abstract_inverted_index.illustrated | 255 |
| abstract_inverted_index.interviewed | 195 |
| abstract_inverted_index.interviews; | 114 |
| abstract_inverted_index.mPROMIS-UE. | 359 |
| abstract_inverted_index.prototyping | 159 |
| abstract_inverted_index.qualitative | 352 |
| abstract_inverted_index.refinement, | 295 |
| abstract_inverted_index.surrounding | 240 |
| abstract_inverted_index.synthesized | 285 |
| abstract_inverted_index.text-based, | 8 |
| abstract_inverted_index.(mPROMIS-UE) | 60 |
| abstract_inverted_index.Introduction | 0 |
| abstract_inverted_index.convenience, | 243 |
| abstract_inverted_index.credibility, | 169 |
| abstract_inverted_index.demonstrates | 334 |
| abstract_inverted_index.observation; | 102 |
| abstract_inverted_index.observations | 118 |
| abstract_inverted_index.participants | 199, 269 |
| abstract_inverted_index.populations. | 376 |
| abstract_inverted_index.prototyping; | 112 |
| abstract_inverted_index.psychometric | 355 |
| abstract_inverted_index.successfully | 311 |
| abstract_inverted_index.acceptability | 171 |
| abstract_inverted_index.clinicians’ | 365 |
| abstract_inverted_index.completeness, | 168 |
| abstract_inverted_index.corresponding | 277 |
| abstract_inverted_index.observations. | 193 |
| abstract_inverted_index.audio-recorded | 130 |
| abstract_inverted_index.member-checking | 113, 177 |
| abstract_inverted_index.recommendations | 303 |
| abstract_inverted_index.English-speaking | 198 |
| abstract_inverted_index.customizability, | 242 |
| abstract_inverted_index.framework-guided | 138 |
| abstract_inverted_index.investigators’ | 367 |
| abstract_inverted_index.member-checking; | 268 |
| abstract_inverted_index.patient-reported | 3, 371 |
| abstract_inverted_index.multidisciplinary | 163 |
| abstract_inverted_index.self-administered | 64 |
| abstract_inverted_index.self-administered, | 27 |
| cited_by_percentile_year.max | 98 |
| cited_by_percentile_year.min | 97 |
| corresponding_author_ids | https://openalex.org/A5044607710, https://openalex.org/A5020029379, https://openalex.org/A5082243931, https://openalex.org/A5018635832, https://openalex.org/A5004320483 |
| countries_distinct_count | 1 |
| institutions_distinct_count | 5 |
| corresponding_institution_ids | https://openalex.org/I145311948, https://openalex.org/I2799853436, https://openalex.org/I2802569147, https://openalex.org/I86755215 |
| sustainable_development_goals[0].id | https://metadata.un.org/sdg/4 |
| sustainable_development_goals[0].score | 0.8999999761581421 |
| sustainable_development_goals[0].display_name | Quality Education |
| citation_normalized_percentile.value | 0.99050102 |
| citation_normalized_percentile.is_in_top_1_percent | True |
| citation_normalized_percentile.is_in_top_10_percent | True |