Abstract
BackgroundImproving 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.ObjectiveThe 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.MethodsA 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.ResultsmPCL 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.ConclusionsWe 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.
Highlights
Cancer is a growing public health concern in sub-Saharan Africa, with at least 500,000 annual deaths in recent years; a doubling of cancer incidence and mortality is projected by 2030 [1,2,3,4]
A human-centered iterative design framework was used to develop the mobile-Palliative Care Link (mPCL) prototype for use by Tanzanian palliative care specialists, poor-prognosis cancer patients and their lay caregivers, and local health workers (LHWs)
Coupled with a projected further increase in smartphone ownership, mobile health [11] promises to grow access to palliative care specialists, resulting in improved symptom management among patients with cancer in Tanzania, our study setting, and other low-resource settings [12]
Summary
Cancer is a growing public health concern in sub-Saharan Africa, with at least 500,000 annual deaths in recent years; a doubling of cancer incidence and mortality is projected by 2030 [1,2,3,4]. Due to the limited pool of palliative care specialists and low public and private investment in cancer control, there is an urgent need for novel, sustainable, and community-based solutions to address inadequate specialty palliative care services throughout Africa [6,7,8], with a focus on the four pillars of the World Health Organization (WHO): (1) appropriate policies, (2) education (professional and lay), (3) drug availability, and (4) implementation throughout society [1,9].
Sign-in/Register to view highlights & summary Talk to us
Join us for a 30 min session where you can share your feedback and ask us any queries you have
Schedule a callDisclaimer: All third-party content on this website/platform is and will remain the property of their respective owners and is provided on "as is" basis without any warranties, express or implied. Use of third-party content does not indicate any affiliation, sponsorship with or endorsement by them. Any references to third-party content is to identify the corresponding services and shall be considered fair use under The CopyrightLaw.
