Access to effective palliative care is a critical public health priority in Tanzania and Africa as a whole, with a recognized need for innovative community-based solutions to a limited palliative care workforce. Mobile technology promises to improve this access for Tanzanian cancer patients; significantly, the feasibility, usability and effectiveness of such applications need to be determined. We hypothesize that a mobile device-based symptom assessment, control and communication application (m-Palliative Care Link (mPCL)) will extend access to palliative care specialists (?specialists?), resulting in symptom control information exchange between specialists, patients, and local health workers, and reduced symptom burden in late-stage cancer patients. mPCL is based on an existing, locally validated, Palliative care Outcome Scale (POS), adapted through this work for mobile delivery.
Specific aims are:
Aim 1. Design and create a secure mobile communication application (m-Palliative Care Link (mPCL)) to facilitate remote assessment of and communication about patient symptom control needs among specialists, patients/caregivers, and local health workers (user groups). mPCL will: a) enable generation/update of a patient's record by the specialist for ongoing review by the specialist and local health worker; b) deliver POS to the patient/caregiver to complete and return on a secure network via mobile device; c) allow the specialist to communicate with the patient/caregiver and local health worker regarding symptom assessment and control based on existing standards and patient desires; d) track symptom control as a trajectory throughout the patient's illness via collection, storage, and analysis of POS responses.
Aim 2. Usability test an mPCL prototype by a combination of hands-on observation/feedback and survey- based assessment of ease of use and suggestions for change among 5-7 participants from each user group. Data will be used to improve mPCL design for subsequent field test (Aim 3).
Aim 3. Field test and validate usability of mPCL among 45 late-stage cancer patients to: a) determine the feasibility, acceptability, barriers, and facilitators of using mPCL for communication and action regarding symptom assessment, information exchange, and symptom control; b) further optimize mPCL for a future effectiveness trial; c) determine per patient cost of mPCL implementation; d) gather data on symptom control needs of Tanzanian cancer patients.
Aim 4. Collect preliminary data comparing field test symptom outcomes with 45 usual care patients. Usual care patients will be recruited to complete the POS at each outpatient palliative care clinic visit. By comparing usual care symptom-based outcomes and medication type, dose and duration with those of field test patients, we will collect preliminary data on mPCL impact, critical to design of a future large-scale mPCL outcomes study. This work promises to be sustainable and scalable.
This work aims to improve late-stage cancer patients' access to high quality, patient-centered symptom assessment and control through the creation, field test, and outcomes assessment of a scalable mobile application (mPalliative Care Link; mPCL)?built around a locally-validated Palliative care Outcome Scale? that links a limited pool of existing Tanzanian palliative care specialists with patients, lay/family caregivers, and local health workers. As mPCL is reliant on a freely available and secure mobile platform and existing personnel, it promises to i) be sustainable and transferable to Tanzanian adults and children with a number of chronic conditions and ii) serve as a model application for other low-income countries.
