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2020

M, Harlemon, Ajayi O, Kachambwa P, Kim MS, Simonti CN, Quiver MH, Petersen DC, et al. 2020. “A Custom Genotyping Array Reveals Population-Level Heterogeneity for the Genetic Risks of Prostate Cancer and Other Cancers in Africa”. Cancer Research .
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Although prostate cancer is the leading cause of cancer mortality for African men, the vast majority of known disease associations have been detected in European study cohorts. Furthermore, most genome-wide association studies have used genotyping arrays that are hindered by SNP ascertainment bias. To overcome these disparities in genomic medicine, the Men of African Descent and Carcinoma of the Prostate (MADCaP) Network has developed a genotyping array that is optimized for African populations. The MADCaP Array contains more than 1.5 million markers and an imputation backbone that successfully tags over 94% of common genetic variants in African populations. This array also has a high density of markers in genomic regions associated with cancer susceptibility, including 8q24. We assessed the effectiveness of the MADCaP Array by genotyping 399 prostate cancer cases and 403 controls from seven urban study sites in sub-Saharan Africa. Samples from Ghana and Nigeria clustered together, whereas samples from Senegal and South Africa yielded distinct ancestry clusters. Using the MADCaP array, we identified cancer-associated loci that have large allele frequency differences across African populations. Polygenic risk scores for prostate cancer were higher in Nigeria than in Senegal. In summary, individual and population-level differences in prostate cancer risk were revealed using a novel genotyping array.

Significance: This study presents an Africa-specific genotyping array, which enables investigators to identify novel disease associations and to fine-map genetic loci that are associated with prostate and other cancers.

Y, Anacak, Zubizarreta E, Zaghloul M, Laskar S, Alert J, Gondhowiardjo S, Giselvania A, et al. 2020. “The Practice of Paediatric Radiation Oncology in Low- and Middle-Income Countries: Outcomes of an International Atomic Energy Agency Study.”. Clinical Oncology Epub 2020 Nov 26. .
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Aims: Childhood cancer survival is suboptimal in most low- and middle-income countries (LMICs). Radiotherapy plays a significant role in the standard care of many patients. To assess the current status of paediatric radiotherapy, the International Atomic Energy Agency (IAEA) undertook a global survey and a review of practice in eight leading treatment centres in middle-income countries (MICs) under Coordinated Research Project E3.30.31; 'Paediatric radiation oncology practice in low and middle income countries: a patterns-of-care study by the International Atomic Energy Agency.'

Materials and methods: A survey of paediatric radiotherapy practices was distributed to 189 centres worldwide. Eight leading radiotherapy centres in MICs treating a significant number of children were selected and developed a database of individual patients treated in their centres comprising 46 variables related to radiotherapy technique.

Results: Data were received from 134 radiotherapy centres in 42 countries. The percentage of children treated with curative intent fell sequentially from high-income countries (HICs; 82%) to low-income countries (53%). Increasing deficiencies were identified in diagnostic imaging, radiation staff numbers, radiotherapy technology and supportive care. More than 92.3% of centres in HICs practice multidisciplinary tumour board decision making, whereas only 65.5% of centres in LMICs use this process. Clinical guidelines were used in most centres. Practice in the eight specialist centres in MICs approximated more closely to that in HICs, but only 52% of patients were treated according to national/international protocols whereas institution-based protocols were used in 41%.

Conclusions: Quality levels in paediatric radiotherapy differ among countries but also between centres within countries. In many LMICs, resources are scarce, coordination with paediatric oncology is poor or non-existent and access to supportive care is limited. Multidisciplinary treatment planning enhances care and development may represent an area where external partners can help. Commitment to the use of protocols is evident, but current international guidelines may lack relevance; the development of resources that reflect the capacity and needs of LMICs is required. In some LMICs, there are already leading centres experienced in paediatric radiotherapy where patient care approximates to that in HICs. These centres have the potential to drive improvements in service, training, mentorship and research in their regions and ultimately to improve the care and outcomes for paediatric cancer patients.

2019

Y, Quintana, and Torous J. 2019. “Youth Mental Health Apps in the Digital Age: A Scoping Review of Trends and Evaluations”. Guelph, Ontario, Canada: Homewood Research Institute.
Publisher's Version

This report provides an overview of published evidence pertaining to apps. The report indicates that at this stage, although there is some evidence related to the value of some apps, evaluations have been limited and incomplete. There is an urgent need for systematic, thorough, objective evaluation of apps to inform decisions about which apps are safe and effective.

Y, Quintana, Fahy D, Abdelfatta AM, Henao J, and Safran C. 2019. “The Design and Methodology of a Usability Protocol for the Management of Medications by Families for Aging Older Adults”. BMC Medical Informatics and Decision Making 19 (181).
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Background: Health research apps often do not focus on usability as a design priority. This is problematic when the population of interest is disproportionately underrepresented as users of mobile apps, especially observed with aging older adults (> = 75). Challenges with the adoption of health information technology (HIT) among this group are exacerbated by poor design and user interface/experience (UI/UX) choices. This protocol describes the testing and evaluation process of one HIT app for the family-based collaboration platform InfoSAGE.

Methods: We aim to recruit twenty subjects from both informal family-caregivers and aging older adults to examine the usability of the InfoSAGE mobile medication manager. Participants will be audio and visually recorded, in addition to the use of screen capture recordings, while ‘thinking aloud’ as they complete eight common usecase scenarios. Multiple independent reviewers will code video and audio recordings for thematic analysis and use problems will be evaluated. Success and failure of each scenario will be determined by completion of sub-events. Time-to-complete analysis will be used to ascertain the learning curve associated with the app.

 

Discussion: Frequently observed problem areas will be used as the basis of further evolution of the app, and will further inform generalized recommendations for the design of HIT apps for research and public use. This study aims to improve the model of development for dual user populations with dissimilar technological literacy to improve retention and use. Results of this study will form the foundation of a design framework for mobile health apps. Keywords: mHealth, Usability, Older adults, Health information technology, User interface design

Quintana, Fahy D, Crotty B, Gorenberg M, Jain R, Kaldany E, Lipsitz L, Chen YP, Henao J, and Safran C. 2019. “A Usability Evaluation of the InfoSAGE App for Family-Based Medication Management”. Stud Health Technol Inform 257: 352-57.
The design of a mobile medication manager within a broader family and elder-centric collaboration platform faces challenges of usability and wide applicability. To inform the development and use cases of eldercare apps, we present the preliminary results of a usability study of an iOS and Android app intended for both family members and aging adults for the mobile management of medication lists. Seven participants were recorded during the performance of eight typical use-case scenarios of the medication portion of the InfoSAGE app. Audio and video recordings were analyzed for themes and events. The aim of this paper is to help inform future design choices for eldercare mobile app

2018

Y, Quintana, Crotty B, Fahy D, Lipsitz L, Davis RB, and Safran C. 2018. “Information Sharing across Generations and Environments (InfoSAGE): Study Design and Methodology Protocol”. BMC Med Inform Decis Mak 18 (1): 105.

Background:  Longevity creates increasing care needs for healthcare providers and family caregivers. Increasingly, the burden of care falls to one primary caregiver, increasing stress and reducing health outcomes. Additionally, little has been published on adults’, over the age of 75, preferences in the development of health information sharing with family members using online platforms. This study aims to assess a novel, Internet based, family-centric communication and collaboration platform created to address the information needs of elders and their informal caregivers in a community setting.

 

Methods:  This study is an internet-based, open prospective cohort study, enrolling dyad pairs of one adult over the age of 75 with one informal caregiver. Dyads will be offered to use the InfoSAGE online platform without prospective assignment. Participants will consent using an online process that enables participation from any location and shares important study and privacy details. The platform will enable the capture of search queries and tracking of functions such as tasks and discussions. Surveys every six months assess health status, health and social needs, and caregiver burden using validated instruments over a two-year period. We will use a mixed methods approach, utilizing qualitative survey data along with website usage analytic data.

 

Discussion: Analysis of the longitudinal usage and survey data will help to examine the patterns of family communication and health information seeking as the central older adult ages. We will use the study data to inform design recommendations relevant to a complex mixture of users, with special consideration to the needs of older adult users and potential physical limitations.

E, Odiaka, Lounsbury DW, Quintana, Fortier B, Rebbeck TR, and Andrews. 2018. “Effective Project Management of a Pan-African Cancer Research Network: Men of African Descent and Carcinoma of TheProstate (MADCaP)”. Journal of Global Oncology 4: 1-12.
Publisher's Version

PURPOSE:

Health research in low- and middle-income countries can generate novel scientific knowledge and improve clinical care, fostering population health improvements to prevent premature death. Project management is a critical part of the success of this research, applying knowledge, skills, tools, and techniques to accomplish required goals. Here, we describe the development and implementation of tools to support a multifaceted study of prostate cancer in Africa, focusing on building strategic and operational capacity.

METHODS:

Applying a learning organizational framework, we developed and implemented a project management toolkit (PMT) that includes a management process flowchart, a cyclical center-specific schedule of activities, periodic reporting and communication, and center-specific monitoring and evaluation metrics.

RESULTS:

The PMT was successfully deployed during year one of the project with effective component implementation occurring through periodic cycles of dissemination and feedback to local center project managers. A specific evaluation was conducted 1 year after study initiation to obtain enrollment data, evaluate individual quality control management plans, and undertake risk log assessments and follow-up. Pilot data obtained identified areas in which centers required mentoring, strengthening, and capacity development. Strategies were implemented to improve project goals and operational capacity through local problem solving, conducting quality control checks and following compliancy with study aims. Moving forward, centers will perform quarterly evaluations and initiate strengthening measures as required.

CONCLUSION:

The PMT has fostered the development of both strategic and operational capacity across project centers. Investment in project management resources is essential to ensuring high-quality, impactful health research in low- and middle-income countries.

 

Full Text Available at ResearchGate
Andrews, Fortier, Quintana, Timothy Rebbeck, and el.al. 2018. “Development, Evaluation, and Implementation of a Pan-African Cancer Research Network: Men of African Descent and Carcinoma of the Prostate”. Journal of Global Oncology.
Publisher's Version

PURPOSE:

Cancer of the prostate (CaP) is the leading cancer among men in sub-Saharan Africa (SSA). A substantial proportion of these men with CaP are diagnosed at late (usually incurable) stages, yet little is known about the etiology of CaP in SSA.

METHODS:

We established the Men of African Descent and Carcinoma of the Prostate Network, which includes seven SSA centers partnering with five US centers to study the genetics and epidemiology of CaP in SSA. We developed common data elements and instruments, regulatory infrastructure, and biosample collection, processing, and shipping protocols. We tested this infrastructure by collecting epidemiologic, medical record, and genomic data from a total of 311 patients with CaP and 218 matched controls recruited at the seven SSA centers. We extracted genomic DNA from whole blood, buffy coat, or buccal swabs from 265 participants and shipped it to the Center for Inherited Disease Research (Baltimore, MD) and the Centre for Proteomics and Genomics Research (Cape Town, South Africa), where genotypes were generated using the UK Biobank Axiom Array.

RESULTS:

We used common instruments for data collection and entered data into the shared database. Double-entered data from pilot participants showed a 95% to 98% concordance rate, suggesting that data can be collected, entered, and stored with a high degree of accuracy. Genotypes were obtained from 95% of tested DNA samples (100% from blood-derived DNA samples) with high concordance across laboratories.

CONCLUSION:

We provide approaches that can produce high-quality epidemiologic and genomic data in multicenter studies of cancer in SSA.

Full Text Available at ResearchGate

Quintana, Yuri, Eduardo. A.G. Martorell, Darren Fahy, and Charles Safran. 2018. “A Systematic Review on Promoting Adherence to Antiretroviral Therapy in HIV-Infected Patients Using Mobile Phone Technology”. Journal of Applied Clinical Informatics 9 (2): 450-66.
Publisher's Version

OBJECTIVE:

 Adherence to antiretroviral therapy (ART) is paramount to successful long-term suppression of human immunodeficiency virus (HIV). For poorly adherent patients with HIV, barriers to remaining adherent may be overcome by the implementation of targeted interventions delivered via mobile devices. This systematic review is focused specifically on mobile phone technologies to deliver adherence interventions in HIV/acquired immunodeficiency syndrome (AIDS) populations.

METHODS:

 This review (PROSPERO #CRD42017065131) systematically extracted data from published literature from five databases on mobile phone interventions to improve adherence to ART for HIV. The reported studies had been conducted between 2007 and 2017. Risk of bias was assessed using the Cochrane method ranking each criterion as low, high, or unclear risk of bias.

RESULTS:

 Of the 835 articles returned, we identified 26 randomized controlled trials (RCTs), retrospective and prospective cohort trials, or mixed method studies with a comparison group that fit criteria for inclusion. No standard measure of adherence was consistent throughout the examined studies, and assessments by self-report, pill counting, and medication event monitoring system (MEMS) were utilized. The studies reported mixed results, with 17 reporting significant improvements to adherence, 3 reporting improvements without supplying p-values, and 6 reporting no significant change or a reduction in adherence.

CONCLUSION:

 The mixed nature of the results exemplifies the need for more comprehensive approaches and larger scale trials to confirm results observed in limited cohort sizes. To better retain satisfactory adherence within the HIV population, and especially in low-resource settings, we recommend that future interventions incorporate multiple strategies: mobile-based reminders, social support structures, and personalized content.

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2017

Quintana, Yuri, and Jennifer McWhirter. 2017. “Culturally Appropriate Behavioral Change in Maternal Health: Role of Mobile and Online Technologies Over Time”. In Cognitive Informatics in Health and Biomedicine: Understanding and Modeling Health Behaviors, 213-33. Spinger.
Publisher's Version

A major challenge in global health is improving newborn and maternal health. A variety of economic, geopolitical, socio-cultural, and technical factors are involved. Online and mobile technologies hold the potential to improve maternal and newborn health by supporting access to education, improving coordinated care, and facilitating patient support. These online and mobile systems have been designed to address a variety of maternal and newborn health outcomes, including: increasing antenatal care attendance; cessation of unhealthy behaviors, such as smoking and drinking alcohol; and increasing vaccination rates of newborns. The success of these systems, however, is very much dependent on how—and whether—they can effect behavioral changes in culturally appropriate ways. This chapter reviews the design of these systems in both developed and developing countries, the technologies and behavioral frameworks used, and the evaluation outcomes. The acceptance of these new patient support networks requires the trust of patients and healthcare providers. Hence, this chapter also reviews the evolution of these systems, and the potential benefits of, and challenges for, their sustained operation.

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