A Mobile App to Improve Symptom Control and Information Exchange Among Specialists and Local Health Workers Treating Tanzanian Cancer Patients: Human-Centered Design Approach

Improving access to end-of-life symptom control interventions among cancer patients is a public health priority in Tanzania, and innovative community-based solutions are needed. Mobile health technology holds promise; however, existing resources are limited, and outpatient access to palliative care...

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Bibliographic Details
Published in:JMIR cancer 2021-03, Vol.7 (1), p.e24062-e24062
Main Authors: Morse, Robert S, Lambden, Kaley, Quinn, Erin, Ngoma, Twalib, Mushi, Beatrice, Ho, Yun Xian, Ngoma, Mamsau, Mahuna, Habiba, Sagan, Sarah B, Mmari, Joshua, Miesfeldt, Susan
Format: Article
Language:English
Subjects:
Cancer
Caregivers
Clinical trials
Communication
Continuity of care
Design
Feedback
Interdisciplinary aspects
Nurses
Original Paper
Pain management
Palliative care
Patients
Physicians
Public health
Quality of life
Smartphones
Software
Systematic review
Usability
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Summary:Improving access to end-of-life symptom control interventions among cancer patients is a public health priority in Tanzania, and innovative community-based solutions are needed. Mobile health technology holds promise; however, existing resources are limited, and outpatient access to palliative care specialists is poor. A mobile platform that extends palliative care specialist access via shared care with community-based local health workers (LHWs) and provides remote support for pain and other symptom management can address this care gap. The aim of this study is to design and develop mobile-Palliative Care Link (mPCL), a web and mobile app to support outpatient symptom assessment and care coordination and control, with a focus on pain. A human-centered iterative design framework was used to develop the mPCL prototype for use by Tanzanian palliative care specialists (physicians and nurses trained in palliative care), poor-prognosis cancer patients and their lay caregivers (patients and caregivers), and LHWs. Central to mPCL is the validated African Palliative Care Outcome Scale (POS), which was adapted for automated, twice-weekly collection of quality of life-focused patient and caregiver responses and timely review, reaction, and tracking by specialists and LHWs. Prototype usability testing sessions were conducted in person with 21 key informants representing target end users. Sessions consisted of direct observations and qualitative and quantitative feedback on app ease of use and recommendations for improvement. Results were applied to optimize the prototype for subsequent real-world testing. Early pilot testing was conducted by deploying the app among 10 patients and caregivers, randomized to mPCL use versus phone-contact POS collection, and then gathering specialist and study team feedback to further optimize the prototype for a broader randomized field study to examine the app's effectiveness in symptom control among cancer patients. mPCL functionalities include the ability to create and update a synoptic clinical record, regular real-time symptom assessment, patient or caregiver and care team communication and care coordination, symptom-focused educational resources, and ready access to emergency phone contact with a care team member. Results from the usability and pilot testing demonstrated that all users were able to successfully navigate the app, and feedback suggests that mPCL has clinical utility. User-informed recommendations included further i
ISSN:2369-1999
2369-1999
DOI:10.2196/24062