Accepted for/Published in: Journal of Medical Internet Research
Date Submitted: Feb 1, 2018
Open Peer Review Period: Feb 1, 2018 - Jul 28, 2018
Date Accepted: Dec 30, 2018
(closed for review but you can still tweet)
User-centered design of a web-based tool to support management of chemotherapy-related toxicities in cancer patients
ABSTRACT
Background:
Cancer patients receiving chemotherapy have high symptom needs that can negatively impact quality of life and healthcare utilization. Chemotherapy-related toxicities usually occur between ambulatory visits to the oncology clinic and result in high rates of unplanned acute care visits, likely reflecting of suboptimal management of these toxicities.
Objective:
To design a prototype tool to facilitate remote management of chemotherapy-related toxicities to address this gap in care.
Methods:
User needs were assessed using a participatory, user-centered design methodology that included ethnographic interviews and focus groups, then analyzed using thematic analysis. Participants included oncology patients, caregivers, and health care providers (HCPs) including medical oncologists, oncology nurses, primary care physicians and pharmacists. Overarching themes informed development of a web-based prototype, which was further refined over 2 rounds of usability testing with end-users.
Results:
Overarching themes were derived from needs assessments which included 14 patients, 1 caregiver, and 12 HCPs. Themes common to both patients and HCPs included: gaps and barriers in current systems, need for decision aids, improved communication and options in care delivery, secure access to credible, timely information, and integration into existing systems. Additionally, patients identified missed opportunities, care not meeting their needs, feeling overwhelmed and anxious, and wanting to be more empowered. HCPs identified accountability for patient management as an issue. These themes informed development of a web-based prototype (“bridges”), which included toxicity tracking, self-management advice, and HCP communication functionalities. Usability testing with 11 patients and 11 HCPs was generally positive; however, identified challenges included tool integration into existing workflows, need for standardized toxicity self-management advice, issues of privacy and consent, and patient-tailored information.
Conclusions:
A web-based tool integrating just-in-time self-management advice and HCP support into routine care may address gaps in systems for managing chemotherapy-related toxicities but attention needs to be paid to implementation issues.
Citation
Per the author's request the PDF is not available.
Copyright
© The authors. All rights reserved. This is a privileged document currently under peer-review/community review (or an accepted/rejected manuscript). Authors have provided JMIR Publications with an exclusive license to publish this preprint on it's website for review and ahead-of-print citation purposes only. While the final peer-reviewed paper may be licensed under a cc-by license on publication, at this stage authors and publisher expressively prohibit redistribution of this draft paper other than for review purposes.