e-ESAS: Evolution of a Participatory Design-based Solution for Breast Cancer (BC) Patients in Rural Bangladesh

Healthcare facility is scarce for rural women in the developing world. The situation is worse for patients who are suffering from diseases that require long-term feedback-oriented monitoring such as breast cancer. Lack of motivation to go to the health centers on patients’ side due to sociocultural barriers, financial restrictions and transportation hazards results in inadequate data for proper assessment. Fortunately, mobile phones have penetrated the masses even in rural communities of the developing countries. In this scenario, a mobile phone-based remote symptom monitoring system (RSMS) with inspirational videos can serve the purpose of both patients and doctors. Here, we present the findings of our field study conducted on 39 breast cancer patients in rural Bangladesh. Based on the results of extensive field studies, we have categorized the challenges faced by patients in different phases of the treatment process. As a solution, we have designed, developed and deployed e-ESAS—the first mobile-based RSMS in rural context. Along with the detail need assessment of such a system, we describe the evolution of e-ESAS and the deployment results. We have included the unique and useful design lessons that we learned as e-ESAS evolved through participatory design process. The findings show how e-ESAS addresses several challenges faced by patients and doctors and positively impact their lives

Symptom Levels in Care-Seeking Bangladeshi and Nepalese Adults With Advanced Cancer

Purpose Three-fourths of patients with advanced cancer are reported to suffer from pain. A primary barrier to provision of adequate symptom treatment is failure to appreciate the intensity of the symptoms patients are experiencing. Because data on Bangladeshi and Nepalese patients’ perceptions of their symptomatic status are limited, we sought such information using a cell phone questionnaire. Methods At tertiary care centers in Dhaka and Kathmandu, we recruited 640 and 383 adult patients, respectively, with incurable malignancy presenting for outpatient visits and instructed them for that single visit on one-time completion of a cell phone platform 15-item survey of questions about common cancer associated symptoms and their magnitudes using Likert scales of 0 to 10. The questions were taken from the Edmonton Symptom Assessment System and the Brief Pain Inventory instruments. Results All but two Bangladeshi patients recruited agreed to study participation. Two-thirds of Bangladeshi patients reported usual pain levels ≥ 5, and 50% of Nepalese patients reported usual pain levels ≤ 4 (population differences significant at P \u3c .001). Conclusion Bangladeshi and Nepalese adults with advanced cancer are comfortable with cell phone questionnaires about their symptoms and report high levels of pain. Greater attention to the suffering of these patients is warranted

Findings of e-ESAS: A Mobile Based Symptom Monitoring System for Breast Cancer Patients in Rural Bangladesh

Breast cancer (BC) patients need traditional treatment as well as long term monitoring through an adaptive feedback-oriented treatment mechanism. Here, we present the findings of our 31-week long field study and deployment of e-ESAS – the first mobile-based remote symptom monitoring system (RSMS) developed for rural BC patients where patients are the prime users rather than just the source of data collection at some point of time. We have also shown how „motivation‟ and „automation‟ have been integrated in e-ESAS and creating a unique motivation-persuasion-motivation cycle where the motivated patients become proactive change agents by persuading others. Though in its early deployment stages (2 months), e-ESAS demonstrates the potential to positively impact the cancer care by (1) helping the doctors with graphical charts of long symptom history (automation), (2) facilitating timely interventions through alert generation (automation) and (3) improving three way communications (doctor-patient-attendant) for a better decision making process (motivation) and thereby improving the quality of life of BC patients