Decision Aids for Patients With Head and Neck Cancer: Qualitative Elicitation of Design Recommendations From Patient End Users

BackgroundPatients with head and neck cancer (HNC) carry a clinically significant symptom burden, have alterations in function (eg, impaired ability to chew, swallow, and talk), and decrease in quality of life. Furthermore, treatment impacts social activities and interactions...

Full description

Bibliographic Details
Main Authors: Eleah Stringer, Julian J Lum, Jonathan Livergant, Andre W Kushniruk
Format: Article
Language:English
Published: JMIR Publications 2023-06-01
Series:JMIR Human Factors
Online Access:https://humanfactors.jmir.org/2023/1/e43551
_version_ 1797734006237691904
author Eleah Stringer
Julian J Lum
Jonathan Livergant
Andre W Kushniruk
author_facet Eleah Stringer
Julian J Lum
Jonathan Livergant
Andre W Kushniruk
author_sort Eleah Stringer
collection DOAJ
description BackgroundPatients with head and neck cancer (HNC) carry a clinically significant symptom burden, have alterations in function (eg, impaired ability to chew, swallow, and talk), and decrease in quality of life. Furthermore, treatment impacts social activities and interactions as patients report reduced sexuality and shoulder the highest rates of depression across cancer types. Patients suffer undue anxiety because they find the treatment incomprehensible, which is partially a function of limited, understandable information. Patients’ perceptions of having obtained adequate information prior to and during treatment are predictive of positive outcomes. Providing patient-centered decision support and utilizing visual images may increase understanding of treatment options and associated risks to improve satisfaction with their decision and consultation, while reducing decisional conflict. ObjectiveThis study aims to gather requirements from survivors of HNC on the utility of key visual components to be used in the design of an electronic decision aid (eDA) to assist with decision-making on treatment options. MethodsInformed by a scoping review on eDAs for patients with HNC, screens and visualizations for an eDA were created and then presented to 12 survivors of HNC for feedback on their utility, features, and further requirements. The semistructured interviews were video-recorded and thematically analyzed to inform co-design recommendations. ResultsA total of 9 themes were organized into 2 categories. The first category, eDAs and decision support, included 3 themes: familiarity with DAs, support of concept, and versatility of the prototype. The second category, evaluation of mock-up, contained 6 themes: reaction to the screens and visualizations, favorite features, complexity, preference for customizability, presentation device, and suggestions for improvement. ConclusionsAll participants felt an eDA, used in the presence of their oncologist, would support a more thorough and transparent explanation of treatment or augment the quality of education received. Participants liked the simple design of the mock-ups they were shown but, ultimately, desired customizability to adapt the eDA to their individual information needs. This research highlights the value of user-centered design, rooted in acceptability and utility, in medical health informatics, recognizing cancer survivors as the ultimate knowledge holders. This research highlights the value of incorporating visuals into technology-based innovations to engage all patients in treatment decisions.
first_indexed 2024-03-12T12:37:58Z
format Article
id doaj.art-08ecd2961a164dc6a103fc326d9389c4
institution Directory Open Access Journal
issn 2292-9495
language English
last_indexed 2024-03-12T12:37:58Z
publishDate 2023-06-01
publisher JMIR Publications
record_format Article
series JMIR Human Factors
spelling doaj.art-08ecd2961a164dc6a103fc326d9389c42023-08-29T00:00:53ZengJMIR PublicationsJMIR Human Factors2292-94952023-06-0110e4355110.2196/43551Decision Aids for Patients With Head and Neck Cancer: Qualitative Elicitation of Design Recommendations From Patient End UsersEleah Stringerhttps://orcid.org/0000-0002-9865-367XJulian J Lumhttps://orcid.org/0000-0002-5624-3541Jonathan Liverganthttps://orcid.org/0000-0002-5661-6555Andre W Kushnirukhttps://orcid.org/0000-0002-2557-9288 BackgroundPatients with head and neck cancer (HNC) carry a clinically significant symptom burden, have alterations in function (eg, impaired ability to chew, swallow, and talk), and decrease in quality of life. Furthermore, treatment impacts social activities and interactions as patients report reduced sexuality and shoulder the highest rates of depression across cancer types. Patients suffer undue anxiety because they find the treatment incomprehensible, which is partially a function of limited, understandable information. Patients’ perceptions of having obtained adequate information prior to and during treatment are predictive of positive outcomes. Providing patient-centered decision support and utilizing visual images may increase understanding of treatment options and associated risks to improve satisfaction with their decision and consultation, while reducing decisional conflict. ObjectiveThis study aims to gather requirements from survivors of HNC on the utility of key visual components to be used in the design of an electronic decision aid (eDA) to assist with decision-making on treatment options. MethodsInformed by a scoping review on eDAs for patients with HNC, screens and visualizations for an eDA were created and then presented to 12 survivors of HNC for feedback on their utility, features, and further requirements. The semistructured interviews were video-recorded and thematically analyzed to inform co-design recommendations. ResultsA total of 9 themes were organized into 2 categories. The first category, eDAs and decision support, included 3 themes: familiarity with DAs, support of concept, and versatility of the prototype. The second category, evaluation of mock-up, contained 6 themes: reaction to the screens and visualizations, favorite features, complexity, preference for customizability, presentation device, and suggestions for improvement. ConclusionsAll participants felt an eDA, used in the presence of their oncologist, would support a more thorough and transparent explanation of treatment or augment the quality of education received. Participants liked the simple design of the mock-ups they were shown but, ultimately, desired customizability to adapt the eDA to their individual information needs. This research highlights the value of user-centered design, rooted in acceptability and utility, in medical health informatics, recognizing cancer survivors as the ultimate knowledge holders. This research highlights the value of incorporating visuals into technology-based innovations to engage all patients in treatment decisions.https://humanfactors.jmir.org/2023/1/e43551
spellingShingle Eleah Stringer
Julian J Lum
Jonathan Livergant
Andre W Kushniruk
Decision Aids for Patients With Head and Neck Cancer: Qualitative Elicitation of Design Recommendations From Patient End Users
JMIR Human Factors
title Decision Aids for Patients With Head and Neck Cancer: Qualitative Elicitation of Design Recommendations From Patient End Users
title_full Decision Aids for Patients With Head and Neck Cancer: Qualitative Elicitation of Design Recommendations From Patient End Users
title_fullStr Decision Aids for Patients With Head and Neck Cancer: Qualitative Elicitation of Design Recommendations From Patient End Users
title_full_unstemmed Decision Aids for Patients With Head and Neck Cancer: Qualitative Elicitation of Design Recommendations From Patient End Users
title_short Decision Aids for Patients With Head and Neck Cancer: Qualitative Elicitation of Design Recommendations From Patient End Users
title_sort decision aids for patients with head and neck cancer qualitative elicitation of design recommendations from patient end users
url https://humanfactors.jmir.org/2023/1/e43551
work_keys_str_mv AT eleahstringer decisionaidsforpatientswithheadandneckcancerqualitativeelicitationofdesignrecommendationsfrompatientendusers
AT julianjlum decisionaidsforpatientswithheadandneckcancerqualitativeelicitationofdesignrecommendationsfrompatientendusers
AT jonathanlivergant decisionaidsforpatientswithheadandneckcancerqualitativeelicitationofdesignrecommendationsfrompatientendusers
AT andrewkushniruk decisionaidsforpatientswithheadandneckcancerqualitativeelicitationofdesignrecommendationsfrompatientendusers