The Community- and MHealth-Based Integrated Management of Diabetes in Primary Healthcare in Rwanda: the D²Rwanda Study (which stands for Digital Diabetes Study in Rwanda) is a twin PhD project, developed in collaboration with Aarhus University (AU) and the University of Luxembourg (UL), and under the auspices of the University of Rwanda and Rwanda Biomedical Centre. The project involves two PhD students, Jean Paul Uwizihiwe (enrolled at AU) and Charilaos Lygidakis (enrolled at UL), and is kindly sponsored by the Karen Elise Jensens Foundation, alongside AU and UL. In this report we wished to narrate what we had been working on for the past two years: from the first steps to understanding better the context and mapping the territory; from obtaining the necessary authorisations to developing the app and translating the questionnaires

Kallestrup, Per

Lygidakis, Charilaos

Uwizihiwe, JeanPaul

Vögele, Claus

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 1 The D²Rwanda Study: March 2018 Report Per Kallestrup, Claus Vögele, Jean Paul Uwizihiwe, Charilaos Lygidakis   The Community- and MHealth-Based Integrated Management of Diabetes in Primary Healthcare in Rwanda: the D²Rwanda Study (which stands for Digital Diabetes Study in Rwanda) is a twin PhD project, developed in collaboration with Aarhus University (AU) and the University of Luxembourg (UL), and under the auspices of the University of Rwanda and Rwanda Biomed-ical Centre. The project involves two PhD stu-dents, Jean Paul Uwizihiwe (enrolled at AU) and Charilaos Lygidakis (enrolled at UL), and is kindly sponsored by the Karen Elise Jensens Foundation, alongside AU and UL. The Beginning For the development of the study protocol, the PhD students carried out preparatory work to collect information from the field and attain in-sight into the organisation of the Rwandan health care system and the provision of services. Focus group discussions with community health workers were carried out with the aim to understand their work and challenges. Visits to health centres and hospitals, and informal dis-cussions with nurses and other health care pro-fessionals were conducted, and a better under-standing of the resources, protocols and how patients with non-communicable diseases are managed was obtained. Meetings were also held with personnel from the Rwanda Biomedical Centre to comprehend the government’s strat-egy for non-communicable diseases thoroughly. This information helped the research team specify the aims of the study in a more concise Conducting a fo-cus group discus-sion with commu-nity health work-ers at the health center of Shyogwe.  2 manner, and shape its methodology accord-ingly. For instance, the Ministry of Health of Rwanda, in response to the increasing need for better management of non-communicable dis-eases at the community level, had just launched the first phase of the Home-Based Care Practi-tioner (HBCP) programme in approximately 100 administrative areas. As such, the PhD students adapted the protocol to include the newly es-tablished HBCP programme, replacing employ-ing community health workers as was originally intended. Similarly, the research team was able to identify that during the dry season keeping mobile de-vices charged can be unfeasible, as power cuts can be frequent and extensive particularly in the rural areas of the country. Responding to this challenge, the team explored the possibility to provide solar batteries to those participants of the study who will use the mobile app, as well as to the HBCPs who use tablets for keeping track and reporting on their patients. Authorisations & Mapping the Territory The study was presented to the Rwanda Na-tional Ethics Committee in April 2017 and the Ethics Review Panel of the University of Luxem-bourg in June 2017, with both committees ap-proving its protocol. At the same time, authori-sation for conducting research in Rwanda was sought and obtained from the Ministry of Edu-cation, while the Ministry of Health granted for-mal support for the project and permission to access health data. Finally, the protocol was submitted to the ClinicalTrials.gov registry (identifier: NCT03376607) and was presented at the 22nd WONCA Europe Conference in Prague in June 2017. Between October 2017 and February 2018, the research team has made an effort to map the territory and collect as much data as possible on The nine hospitals of the study span al-most all parts of the country.  3 the nine participating hospitals, the surround-ing health centres and the HBCPs working in their catchment area. With the help of Michela Bia, statistician from the Luxembourg Institute of Socio-Economic Research, a plan for the as-sessment of the hospitals was established, which includes indicators on the services pro-vided, their catchment area, the patients with non-communicable diseases followed by the different services, hospital admissions, their personnel and training, and the available equip-ment. Field trips to the nine hospitals were or-ganised for the data collection, during which the research team also had the opportunity to meet with the directors, clinical managers, nurses and other personnel from the hospital.  The Development of the In-tervention This phase commenced in Spring 2017 and com-prised two main activities: i) the development of the mobile app, and; ii) the cultural adapta-tion of the questionnaires.  i) The Development of the Nyitaho Mobile App Initially, a document with the specifications of the app was developed, which included a de-tailed list of the features, classified into two pri-ority categories: the “must-have” and “good-to-have”. Before commencing the actual coding phase, wireframes and mock-ups were drawn using the Balsamiq software to help create and share a visualisation of the basic features. Not only did the mock-ups facilitate communica-tion among the members of the development team, but they also helped with the addition of new ideas (for instance, the voice-over button) and the identification of problematic areas and potential solutions.  Examples of the mock-ups which accompanied the specifications of the mobile app.  4 A local software company was contracted for the development of the project (WiredIn Ltd), aiming at taking advantage of their knowledge of the Rwandan context, its challenges and op-portunities. Right from the beginning, the team of the company has demonstrated exceptional levels of professionalism and know-how, and has managed to provide essential input and guidance. Based on the agile methodology, the development work was divided into small pieces; for each iteration, there were phases of planning, design, coding and testing. Bi-weekly meetings took place with the two PhD students, aiming at demonstrating the working product of the iterations, and provide feedback. Follow-ing this workflow, the development team was able to adapt to changes and requests rapidly. The name Nyitaho, which in Kinyarwanda means “Assist Me”, was chosen for the mobile app for patients. The app consists of four main areas: a) A learn section, with educational material (including text and videos) and quizzes aimed at testing the patients’ basic knowledge on health, diabetes and life-style. b) The my treatment section, with notifica-tions for upcoming appointments (e.g., with nurses, laboratory examinations, etc.), and a list of the current medication of the patient. c) A diary section, in which the user can take notes and photographs. This section also includes a progress page, with the results from some clinical and laboratory meas-urements carried out at the hospital. d) A main page, in which notifications for ap-pointments and newly educational availa-ble material are displayed, as well as the user’s score based on the quizzes taken. Screenshots from the beta version of the Nyitaho app.  5 To complement the patients’ app and support its proper functioning, the company also devel-oped a web-based system for the nurses and HBCPs of the study, through which it will be possible to arrange appointments with the pa-tients (thus triggering notifications to the pa-tients’ phones), insert their clinical and labora-tory results, and update their current medica-tion. ii) Cultural Adaptation of the Study Questionnaires The endpoints which will be assessed in the D²Rwanda study include the evaluation of the health literacy level, medication adherence, health-related quality of life and mental well-being of the participants. For the measurement of these endpoints, four appropriate question-naires were identified: the Information and Sup-port for Health Actions Questionnaire (ISHA-Q), the Brief Medication Questionnaire (BMQ), the Diabetes-39 (D-39) and the Problem Areas in Diabetes questionnaire (PAID). As the origi-nal questionnaires are in English, it was neces-sary to translate them into Kinyarwanda, and conduct a cross-cultural adaptation to maintain content equivalence of the translated version. The process consisted of four steps: 1. Two native Rwandans, proficient in Eng-lish, carried out two independent forward translations of the four questionnaires into Kinyarwanda. The two forward trans-lations were then reconciled into one and any discrepancies were addressed. 2. Two English native speakers with profi-ciency in Kinyarwanda back-translated the questionnaires into English. They were kept blind to the original question-naires. Subsequently, the two resulting backward translations were synthesised into one. 3. An expert panel was established to evalu-ate all versions of the questionnaires, reach a consensus on any discrepancies The development team of WiredIn demonstrating an alpha version of the Nyitaho app.  6 compared to the original English versions, and produce a consolidated pre-final ver-sion. In addition to the four involved translators, the panel consisted of an epi-demiologist / methodologist, a linguistic expert, and the two PhD students. In the case of the ISHA-Q, the panel also in-cluded the developers of the question-naire. Reports and the pre-final version were shared with the developers of the questionnaires and their consent was re-ceived. 4. A total of 100 interviews were conducted with patients, during which the question-naires were administered and the re-spondents were assessed as to whether they could interpret the questions and an-swer categories correctly. Assessed were also the effort involved in responding, level of interest, and areas of embarrass-ment and distress potentially leading to social desirability bias. The interviews were transcribed and analysed, and based on the participants’ feedback a few amendments were made and a final ver-sion of the translated questionnaires was developed. Challenges The complexity of the project has posed three main challenges to the research team.  First, the intervention was designed to be inte-grated into the primary health care system of the country, building upon the knowledge of the context, tackling its specific needs, and thus having more chances to provide a significant impact on the population. Due to this design, the study needed to receive formal support from the local authorities, which led to time delays.  Second, the nine hospitals in which the study will take place are distributed over almost the Nurses and re-search assistants supporting the interviews for the cultural adapta-tion of the ques-tionnaires.  7 entire country, constituting a logistical chal-lenge, the resolution of which will require sup-plementary assistance for the coordination and quality control of the data collection. Finally, even though the research team explored the feasibility of developing the app with the support of a third academic institution with an already deployed mobile solution, eventually it was decided that it would be more appropriate to employ a local software company. Notwith-standing that this approach has facilitated tai-loring the app to a higher degree and has en-hanced its response to the local needs, it has also led to an increase of the costs related to the development and maintenance of the app. Next Steps The training of the nurses and HBCPs partici-pating in the project will commence in March 2018, and subsequently patient recruitment will start. A three-month recruitment period is ex-pected to reach the estimated 432 participants needed for the study. In March 2018, the University of Rwanda will or-ganise a symposium for the dissemination of the findings of the twin PhD study “Research based capacity building of Primary health care in Rwanda” (conducted by Vincent Cubaka and Michael Schriver, supervised by Per Kallestrup, and sponsored by the Karen Elise Jensens Foun-dation). During the symposium, the D²Rwanda study will also be presented. Furthermore, based on the efforts made for the preparation of the study, it is expected that the following publications will be submitted in 2018: • “Employing diabetic tools for Rwanda: the cultural adaptation of the Diabetes-39 and PAID Questionnaires” • “Conducting the cultural adaptation and establishing the psychometric properties of ISHAQ in Rwanda” • “Developing and piloting of the Nyitaho app for the D²Rwanda study for the man-agement of diabetes in Rwanda”  Associate Professor Per Kallestrup, one of the supervisors of the project, paid a field visit in January 2018.  In the photo, from left to right: Chari-laos Lygidakis, Per Kallestrup, Jean Paul Uwizihiwe, Vincent Cubaka. 

The D²Rwanda Study: March 2018 Report

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The D²Rwanda Study: March 2018 Report

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