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

BACKGROUND: 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 pall...

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Autores principales: 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
Formato: Online Artículo Texto
Lenguaje:English
Publicado: JMIR Publications 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8088847/
https://www.ncbi.nlm.nih.gov/pubmed/33755022
http://dx.doi.org/10.2196/24062
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author 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
author_facet 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
author_sort Morse, Robert S
collection PubMed
description BACKGROUND: 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. OBJECTIVE: 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. METHODS: 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. RESULTS: 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 improvement in app navigation, simplification of patient and caregiver components and language, and delineation of user roles. CONCLUSIONS: We designed, built, and tested a usable, functional mobile app prototype that supports outpatient palliative care for Tanzanian patients with cancer. mPCL is expressly designed to facilitate coordinated care via customized interfaces supporting core users—patients or caregivers, LHWs, and members of the palliative care team—and their respective roles. Future work is needed to demonstrate the effectiveness and sustainability of mPCL to remotely support the symptom control needs of Tanzanian cancer patients, particularly in harder-to-reach areas.
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spelling pubmed-80888472021-05-07 A Mobile App to Improve Symptom Control and Information Exchange Among Specialists and Local Health Workers Treating Tanzanian Cancer Patients: Human-Centered Design Approach 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 JMIR Cancer Original Paper BACKGROUND: 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. OBJECTIVE: 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. METHODS: 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. RESULTS: 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 improvement in app navigation, simplification of patient and caregiver components and language, and delineation of user roles. CONCLUSIONS: We designed, built, and tested a usable, functional mobile app prototype that supports outpatient palliative care for Tanzanian patients with cancer. mPCL is expressly designed to facilitate coordinated care via customized interfaces supporting core users—patients or caregivers, LHWs, and members of the palliative care team—and their respective roles. Future work is needed to demonstrate the effectiveness and sustainability of mPCL to remotely support the symptom control needs of Tanzanian cancer patients, particularly in harder-to-reach areas. JMIR Publications 2021-03-23 /pmc/articles/PMC8088847/ /pubmed/33755022 http://dx.doi.org/10.2196/24062 Text en ©Robert S Morse, Kaley Lambden, Erin Quinn, Twalib Ngoma, Beatrice Mushi, Yun Xian Ho, Mamsau Ngoma, Habiba Mahuna, Sarah B Sagan, Joshua Mmari, Susan Miesfeldt. Originally published in JMIR Cancer (http://cancer.jmir.org), 23.03.2021. https://creativecommons.org/licenses/by/4.0/This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Cancer, is properly cited. The complete bibliographic information, a link to the original publication on http://cancer.jmir.org/, as well as this copyright and license information must be included.
spellingShingle Original Paper
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
A Mobile App to Improve Symptom Control and Information Exchange Among Specialists and Local Health Workers Treating Tanzanian Cancer Patients: Human-Centered Design Approach
title A Mobile App to Improve Symptom Control and Information Exchange Among Specialists and Local Health Workers Treating Tanzanian Cancer Patients: Human-Centered Design Approach
title_full A Mobile App to Improve Symptom Control and Information Exchange Among Specialists and Local Health Workers Treating Tanzanian Cancer Patients: Human-Centered Design Approach
title_fullStr A Mobile App to Improve Symptom Control and Information Exchange Among Specialists and Local Health Workers Treating Tanzanian Cancer Patients: Human-Centered Design Approach
title_full_unstemmed A Mobile App to Improve Symptom Control and Information Exchange Among Specialists and Local Health Workers Treating Tanzanian Cancer Patients: Human-Centered Design Approach
title_short A Mobile App to Improve Symptom Control and Information Exchange Among Specialists and Local Health Workers Treating Tanzanian Cancer Patients: Human-Centered Design Approach
title_sort mobile app to improve symptom control and information exchange among specialists and local health workers treating tanzanian cancer patients: human-centered design approach
topic Original Paper
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8088847/
https://www.ncbi.nlm.nih.gov/pubmed/33755022
http://dx.doi.org/10.2196/24062
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