Findings of Mobile based Palliative Care System: Towards a Generic Framework for Measuring QoL

Haque, M. N.; Adibuzzaman,; Uddin, Nesar; Kawsar, Ferdaus; Sheikh, Ahamed; Love, Richard R.; Dowla, Rumana; Ferdousy, Tahmina; Salehi, Reza; Hossain, Syed Shahadat; Roe, David

doi:10.4108/icst.pervasivehealth.2013.252044

Cited by 3 publications

(4 citation statements)

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“…It is within this broad perspective that the authors present the current innovations. Under the premise that information technology (IT) tools could contribute constructively to creation of patient-centered, effective, and cost-effective palliative care systems feasible within diverse health care systems in low-and middle-income countries (LMICs), we have been working for several years to develop practical, user-friendly, affordable IT tools and systems which address these afore-stated barriers [9][10][11].…”

Section: Challenges and Barriers To High-quality Palliative Care In Clinical Practicementioning

confidence: 99%

“…We have first developed a basic cell phone symptom-status application, the reliability, feasibility, and validity of which we have established in studies in Bangladesh and Nepal [9][10][11]. The Marquette Symptom Assessment Survey (MSAS) is a 15-item questionnaire covering 12 symptoms; 4 items address pain dimensions.…”

Section: A Patient-centric Generalizable Palliative Care System That Addresses Common Clinical Practice Barriers 21 Acquiring Real-time Smentioning

confidence: 99%

“…In a pilot study, 10 women with advanced breast cancer provided inter-rater and intra-rater reliabilities of >0.73, and patients or their caretakers were able to successfully submit reports despite progressive terminal illnesses [10]. These women and their families willingly and regularly submitted reports over several months.…”

Section: A Patient-centric Generalizable Palliative Care System That Addresses Common Clinical Practice Barriers 21 Acquiring Real-time Smentioning

confidence: 99%

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The Marquette Palliative Care System

Love¹,

Ahamed²

2019

Palliative Care

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Worldwide, major clinical barriers to effective palliative care are the absence of a. current data on symptom type and intensity; b. immediately accessible information on practical, affordable, and effective interventions; and c. self-sustaining systems to facilitate physician engagement in continuing palliative care. Our adaptable system, developed for Bangladesh and Nepal, addresses these barriers. A tele-home palliative care program facilitates home care, minimizes expense, and encourages efficient professional practitioner involvement employing two information technology tools: a patient cell-phone "app" on the Android platform with a 15-item symptom questionnaire and an Internet website with health information sections for patients/families and for clinicians. The physician section contains a guide for patient symptom review, clinical practice palliative care guidelines, secured patient demographics, medical summaries, and current and past symptom reports along with prescription-writing capability. The system is managed by a local organization that registers patients and their physicians, instructs patients on the free downloadable application and completes their demographic and medical summaries, and arranges collection of a modest fee. The organization also ensures regular physician/ clinic visits by the patient or by a family member with a patient phone check-in, at least every 2 weeks.

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Section: Challenges and Barriers To High-quality Palliative Care In Clinical Practicementioning

confidence: 99%

Section: A Patient-centric Generalizable Palliative Care System That Addresses Common Clinical Practice Barriers 21 Acquiring Real-time Smentioning

confidence: 99%

Section: A Patient-centric Generalizable Palliative Care System That Addresses Common Clinical Practice Barriers 21 Acquiring Real-time Smentioning

confidence: 99%

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The Marquette Palliative Care System

Love¹,

Ahamed²

2019

Palliative Care

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“…As recommended by the authors, this study contributes accounts from patients themselves on technology use. Haque et al (2014) developed and piloted a digital health system (e-ESAS) for rural palliative care patients in Bangladesh that included a patient module and a doctor module to record and monitor symptoms respectively. The pilot showed better communication between doctors and patients resulting in more timely interventions.…”

Section: Related Workmentioning

confidence: 99%

A Prototype Design for a Virtual Hospice and Initial Usability Study

Taylor

Wilcock²

2018

Electronic Workshops in Computing

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Hospice provides physical, social, emotional and spiritual care for people with life-shortening illness. Providing equitable access to services is becoming increasingly difficult for all hospices due to a rising number of people living longer with life-shortening illness and limited healthcare resources. Consequently, hospices are increasingly looking at ways of using technology to deliver services over a distance. This paper presents a prototype design for a web-based system ('virtual hospice') to improve access to services provided by Highland Hospice in the UK, and an initial usability study involving three elderly male patients. Participants completed most of the usability tasks, made positive comments, and would definitely or likely recommend the system to people who might benefit from it. The findings were translated into recommended changes to the virtual hospice, and may be helpful for other HCI designers and researchers working in this area.

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e-ESAS: Evolution of a participatory design-based solution for breast cancer (BC) patients in rural Bangladesh

Haque

Kawsar

Adibuzzaman

et al. 2014

Pers Ubiquit Comput

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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 NOT THE PUBLISHED VERSION; this is the author's final, peer-reviewed manuscript. The published version may be accessed by following the link in the citation at the bottom of the page.

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Findings of Mobile based Palliative Care System: Towards a Generic Framework for Measuring QoL

Cited by 3 publications

References 0 publications

The Marquette Palliative Care System

The Marquette Palliative Care System

A Prototype Design for a Virtual Hospice and Initial Usability Study

e-ESAS: Evolution of a participatory design-based solution for breast cancer (BC) patients in rural Bangladesh

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