Geneva Health Forum Archive

Browse and download abstracts, posters, documents and videos from past editions of the GHF

New Educational Programme for Patients with Epilepsy at Geneva University Hospital: Switzerland

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Author(s): Anne-Chantal Héritier Barras1, Anne-Laure Hariel Spinelli1
Affiliation(s): 1Neurology Service, Geneva University Hospitals
Name your project or intiative: New educational programme for patients with epilepsy at Geneva University Hospital
1st country of focus: Switzerland
Relevant to the conference theme: New roles and responsibilities of health personnel
Summary: Even in countries with easy access to medication, patients with epilepsy continue to suffer from psycho-social difficulties often underestimated by health caregivers. An educational programme focused on proper needs of patients is proposed. A comprehensive interview first explores the patients' needs in domains such as comprehension of the disease, emotions and impact on daily social life. Following education sessions a second individual interview with patients was held to evaluate the personal benefit of this approach. Each health caregiver concerned with epileptic patients should be trained in order to systematically include therapeutic education in the care processes.
What challenges does your project address and why is it of importance?: Epilepsy is a chronic neurological condition affecting more than 50 million people worldwide. Medication works well with about 75% of patients. However, the misconceptions, prejudice and subsequent stigma often encountered by patients with epilepsy lead to discrimination, social isolation and personal denial of the disease. Even in developed countries with easy access to antiepileptic drugs and highly technological diagnostic tools, the patients and their families continue to suffer from the physical, psychological, social and economic consequences of epilepsy. The physicians' preoccupation with seizure control and diagnostic processes often overshadows other concerns. A local qualitative study in 2008 explored the educational needs of patients living with epilepsy and how the needs of the patients were perceived by their health caregivers. In comparison with patients, the health caregivers underestimate the difficulties of social adaptations, the direct effect of the seizures and the emotional impact on the patient. In contrast, the concerns of the health professionals reflect their own preoccupations: apprehension in relation to the treatment and comprehension of aetiology. To be effective, a therapeutic educational program must focus on the real needs of the patients and not only on needs perceived by the health caregivers.
How have you addressed these challenges? Do you see a solution?: An educational approach to patients is proposed, focused on their proper needs in order to acquire the necessary competences to live better with epilepsy. The programme is the following. A) An initial comprehensive face-to-face interview between the patient and a health caregiver (nurse or medical doctor) explores the needs of the patient in the four different domains identified in the study mentioned above: 1. Comprehension: “What do I understand about my situation?”2. Emotions: “What do I feel about that?”3. Impact of the disease on the patient: “How does my condition change my daily life?”4. Impact of the disease on the patient’s social life: “How does my condition change my relationship with others?”B) After this first interview, the patient is invited to follow either individual sessions, if the psychological impact predominates, or group sessions, if the social difficulties are prominent. C) In the group sessions, several topics are explored, according to the themes emerging from the study mentioned above:- my seizure: symptoms, localisation in the brain, facilitating factors- management of my seizure: what to do, what to say and to whom- management of my treatment: my advantages and disadvantages to take medication- my specific living conditions: driving licence, applying for a job, pregnancy, travelling, D) Patients benefit from a second individual interview to remind them of the different topics reviewed earlier. The discussion is then continued with the patient's private concerns and difficulties. A personal project is outlined with small objectives in order to become a reality in a near future.
How do you know whether you have made a difference?: An indication of knowing whether we have made a difference is by listening to the patients. During the first face-to-face interview, patients recounted the following:- « If we don’t speak about how we live, the caregivers, the ambulance drivers, the neurologists… they will all never know how we live… So, they won’t understand our daily life. »- « The way a physician learns, the training he received, it is : here is a symptom. Our daily life, our social life: they don’t see them at all. »- « For us, our life isn’t only how many seizures we have and what kind of seizures we have. »And at the second face-to-face interview, we can hear:- « I had the distinct feeling that we could say what we were feeling, that you cared about that, and that it was possible to go further in accordance with how we were living… »- « So, it gave me the impression of being understood, heard. »- « Effectively, I think that to have the opportunity to speak about different concerns, to be able to say things, as well organized as it was : we could express ourselves, listen to each other, unveil our selves, permit to meet each other;  it created a bond, maybe more difficult to create without that. »- « We checked the global situation; I know I have a resource here and that’s great. »- « It helps us in our daily life. »At the moment, we are working on constructing  evaluations, especially auto-evaluations, with an emphasis on patient autonomy. We will evaluate if educational objectives have been reached and if the patient has developed new competences. We also assess the patient’s satisfaction.
Have you or the project mobilized others and if so, who, why and how?: This programme is focused upon those patients who attended educational sessions. The role of patients changed during the process. Passive patients became active partners of health care. The patients’ verbatim (cf. 5.) shows a better comprehension of their own disease, a sharing of life experiences with people in a similar situation and enhanced self-esteem. In parallel, health caregivers are also were affected by the process. They modified their medical practice by considering patients’ preoccupations rather than focusing soley on diagnosis and this was achieved by shared decision-making with the patient and by recognising the patient-health caregiver relationship as a partnership.
When your donor funding runs out how will your idea continue to live?: We do not have specific funding for our educational programme. The awareness and mobilization of the entire medical team taking care of epileptic patients is in progress. Once the medical team is persuaded of the validity of our approach, we hope that education will be included in the health processes and system. If so, the durability of our process will be assured.

 


School Based Intervention to Prevent and Manage Obesity: Tunisia

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Author(s): Jihene Maatoug Maaloul1, Imed Harrabi1, Mylene Belkacem1, Sonia Hmad1, Hassen Ghannem1
Affiliation(s): 1Department of Epidemiology, University Hospital Farhat Hached, Sousse Tunisia
1st country of focus: Tunisia
Relevant to the conference theme: Non-communicable chronic diseases
Summary (max 100 words): This paper presents the results of a pre assessment study aimed at studying the prevalence of obesity and overweight among two randomized samples
of schoolchildren aged 11 to 16 years old who were enrolled in a school based intervention to prevent and manage obesity in the region of Sousse, Tunisia.
Background (max 200 words): The prevalence of childhood obesity has increased worldwide and in Tunisia we are facing an epidemiological transition.
Objectives (max 100 words): The objective of this research was to study the prevalence of obesity and overweight in a population of school children, and to propose a school
based intervention to prevent and manage obesity in the region of Sousse, Tunisia.
Methodology (max 400 words): This was a quasi experimental design with school based intervention. The intervention group was located in Sousse Jawhara and Sousse Riadh and the
control group was located in the region of Msaken. Pre assessment was done with a randomized sample in each group to evaluate the prevalence of obesity in the school year 2009/2010. It concerned schoolchildren aged 11 to 16 years old. The total number of participants was 4003 with 1929 and 2074 respectively in intervention and control groups. The intervention began in the school year 2010/2011 and will last three years. We used a self administered questionnaire to collect data about socio-demographic characteristics, eating and sedentary habits. We also took weight, height and waist circumference of selected schoolchildren. The intervention program began in school year 2010/2011 and will last three years. It consists of educative sessions on healthy diet and physical activity. It also consists of sensitization days animated byschoolchildren leaders formed by the project team.
Results (max 400 words): The proportion of boys was 50.2% and 46.5% respectively in intervention and control groups. The mean age was 13.24 ±1.26 and 13.48 ± 1.30 in each
group. The proportion of schoolchildren who consume vegetables daily was respectively 28.4% and 40.3% in the intervention and control groups. Likewise, the proportion of fruits consumption was 55.8% and 57.6%. The proportion of schoolchildren who do recommended level of physical activity was 14.7% and 9.5% respectively in intervention and control groups. In the intervention group, the proportion of overweight and obesity was respectively 20.6% and 7%. In the control group, the proportion of overweight and obesity was respectively 15.5% and 4.5%.
Conclusion (max 400 words): Intervention in schools is important to prevent and manage obesity among adolescents.

ELIPS: Multi-Dimensional Prevention Program in Switzerland after an Acute Coronary Syndrome

Author(s): Pierre-Frederic Keller1, David Carballo1, Sebastian Carballo3, François Mach1
Affiliation(s): 1Cardiology Division, Geneva University Hospitals, Geneva, Switzerland, 2Division of General Internal Medicine, Geneva, Switzerland
Name your project or intiative: ELIPS: multi-dimensional prevention program after an Acute Coronary Syndrome
1st country of focus: Switzerland
Additional countries of focus: Industrialized countries
Relevant to the conference theme: Non-communicable chronic diseases
Summary: The ELIPS program was designed to improve prescription rates by physicians and long term medication adherence by patients. Novel tools of information were specifically created for patients to improve the quality of information: a website, a DVD, a wall chart for hospitals, flyers and an application for smartphones. Moreover a specific training course in motivational interviewing dedicated to caregivers was developed including a web-platform e-learning and face-to-face training courses. Finally ELIPS network includes a discharge treatment card, a media campaign and information meetings for physicians. The media campaign in Switzerland was carried out to reinforce the deployment of the ELIPS program.
What challenges does your project address and why is it of importance?: Audits of practice reveal suboptimal control of cardiovascular risk factors and under use of evidence-based cardiovascular medications after an Acute Coronary Syndrome. Based on our systematic review of tested interventions, we developed the ELIPS program targeting patients, caregivers and healthcare system
How have you addressed these challenges? Do you see a solution?: To demonstrate the benefits of the ELIPS program on recurrence rate of cardiovascular events, the ELIPS programme has been first implemented in a Swiss healthcare network.
How do you know whether you have made a difference?: A multicenter clinical study is currently underway including prospectively a total of 2400 patients before and after the implementation of the ELIPS program with a follow-up of 12 months
Have you or the project mobilized others and if so, who, why and how?: We have mobilized all Swiss university cardiology centers. And doing so we have managed to deploy the program in all of these centers and this has involved the training of over 500 nurses in motivational interviewing, the diffusion of all informations tools (DVD, smartphone application, didactic wall chart, flyers, discharge treatment program) in 4 languages. We have also organized information meetings for referring hospitals, outpatient practionners, and rehabilitation centers and all the tools of information were also available for all caregivers treating these patients in Switzerland
When your donor funding runs out how will your idea continue to live?: Projects for future funding are currently being investigated and developed by an external consulting group. The Swiss Heart Foundation will include the ELIPS program in the catalogue of its services.

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Improving Type 1 Diabetes Management Through Youth Empowerment: Dominican Republic

Author(s): Merith Basey1, Molly Lepeska1
Affiliation(s): 1Ayuda, Arlington, United States,
Name your project or intiative: Improving type 1 diabetes management through youth empowerment
1st country of focus: Dominican Republic
Additional countries of focus: Ecuador
Relevant to the conference theme: Non-communicable chronic diseases
Summary: An organization run for youth by youth, AYUDA’s work is based on the idea that youth can be agents of change in diabetes communities, where a lack of education is as dangerous as a lack of insulin.  With its focus emerging from Latin America, AYUDA works with local diabetes communities in countries like the Dominican Republic and Ecuador, to develop and implement local, sustainable diabetes projects.  AYUDA’s peer learning model uses international volunteers as catalysts to empower local youth living with diabetes to form healthy habits that allow them to improve the management of their diabetes and live happier lives.
What challenges does your project address and why is it of importance?: Today 366 million people are living with diabetes; 70% of whom live in low- and middle-income countries where 80% of deaths occur as a result of non-communicable diseases (NCDs).  In Latin America and the Caribbean, NCDs and diabetes are estimated to cause as much as 60% of the mortality in the region. Approximately 20% of the total population in Latin American and the Caribbean is aged 15 and 24 with an average of 39% living in poverty. Youth is when people engage in high risk behavior and lifestyle habits are established. In the region, 25% -32% of the 12 to 24year old population is suffering the consequences of at least one kind of risky behavior. Although NCDs like diabetes affect many young people, most prevention measures are not targeted towards youth. It is young people who will bear the brunt of the economic, social and emotional burden of NCDs throughout their lives.  Adopting a healthy lifestyle is even more important for youth with diabetes because complications set in slowly and are irreversible. Extensive research demonstrates that diabetes control and health outcomes of people living with diabetes depend largely on their active involvement in managing their condition.
How have you addressed these challenges? Do you see a solution?: AYUDA has established an international volunteer program that mobilizes individuals (many of whom have diabetes themselves) - ranging from high school students to world-class medical professionals - to support diabetes leadership and empowerment programs primarily throughout Latin America and the Caribbean.  AYUDA  has been implementing sustainable low cost programs for children with type 1 diabetes in developing countries in conjunction with local partner organizations in 9 countries for over a decade. By empowering young people living with diabetes to work with and educate other youth with the same disease, AYUDA has found improved health outcomes for children when compared to alternative interventions in resource poor settings, in particular with regard to psychosocial outcomes. Since current research estimate 50% of people living with diabetes suffer from depression the psychosocial benefits from such interventions should not be overlooked from a mental health perspective. AYUDA programs are built on the fundamental idea that youth can serve as agents of change and that a lack of education is as dangerous as a lack of insulin.  As an organization, AYUDA has been recognized for its social entrepreneurship and innovation by Ashoka: Innovators for the Public, the World Bank as a 2007 Development Marketplace Finalist, and the United Nations as an NGO in Special Consultative Status with the Economic and Social Council of the UN. The socioeconomic backgrounds of the local diabetes communities AYUDA serves are diverse, although in general the children and families are from low to middle socioeconomic backgrounds.   Although today there is no cure for diabetes- the condition can be effectively managed with the appropriate tools and education,  including  peer-to –peer learning and empowerment,  which will enable young people with diabetes to live healthier, happier and more productive lives.
How do you know whether you have made a difference?: In the past decade AYUDA has expanded its support to diabetes communities by creating the AYUDA Volunteer Program that has sent more than 300 volunteers abroad to work with local partner organizations in 9 different countries.  AYUDA employs a results-based approach to implementing its strategy and programs and is committed to monitoring outputs, outcomes and impact . On the local program level, AYUDA works with its local partners to help develop logic models and measure effectiveness in order to demonstrate tangible results.  While AYUDA’s local partners are responsible for monitoring their own outcomes, AYUDA provides technical assistance in the form of volunteers and staff to help ensure effectiveness and impact are measured. In Ecuador, the country where AYUDA first began its work, the Campo Amigo program has reached approximately 80% of children and youth living with diabetes in the country.  Since 1999, over 760 Ecuadorian campers, 200 AYUDA volunteers, and 50 Ecuadorian health professionals have participated in the program. Cohort data demonstrates improvements in short-term and long-term glycemic control (HbA1c values). Campo Amigo Ecuador led to the establishment of the Fundación Juvenil de Ecuador (FDJE), which now serves as the collective voice for children and families with diabetes throughout the year. The FDJE has negotiated the lowering of prices of diabetes supplies from pharmaceutical companies, and initiated talks with the government to extend health coverage benefits to children and families with diabetes.  The FDJE now serves hundreds of families and children living with diabetes throughout the year and currently sponsors the supplies of 50 low income children with type 1 diabetes. The more recently established Dominican program supports over 150 children with type 1 diabetes in the Dominican Republic in conjunction with local partner Aprendiendo a Vivir (AAV). The program has recently integrated AYUDA’s youth leadership model and is currently sponsoring low income children with insulin and strips. It is estimated that close to 90% of low income families who have a child with type 1 diabetes reach AAV’s services via the local public children’s hospital ‘Roberto Reid Cabral’ in Santo Domingo.
Have you or the project mobilized others and if so, who, why and how?: AYUDA’s youth-to-youth empowerment model for transforming local diabetes communities has directly helped to mobilize: (a) local youth with diabetes and their families, (b) local health professionals, (c) local governments and ministries of health, and (d) AYUDA’s volunteers both with and without diabetes who will be able to apply their acquired leadership skills in different environments in the future. Having been trained to become young leaders of social change, AYUDA’s volunteers gain valuable skills and experiences that transform their lives personally, emotionally and professionally. Local youth with diabetes receive fundamental,  diabetes management education in a way that motivates them to take control of their health live happier lives.  AYUDA has worked to establish successful partnerships and relationships with a variety of institutions, including international organizations, pharmaceutical companies, diabetes camps and hospitals, and local partners. These relationships play an essential role in promoting AYUDA’s programs, fundraising, recruiting and identifying volunteers and acquiring in-kind diabetes medical supplies.  More recently, AYUDA has taken its model of youth empowerment into the greater arena of non-communicable diseases, for which diabetes is a considerable part – by becoming increasingly involved in the global policy around the High Level Meeting on  NCDs.   After co-hosting a side meeting at the summit, AYUDA is moderating a  Global Youth and NCDs working group of over 60 members from around the word, including the youth leaders from the countries in which we work, with the goal of creating a youth movement that ensures that young people,  especially those living with and working within NCDs are a meaningful part of the global NCD decision-making process. One particular partnership that AYUDA would like to highlight is with Ashoka: Innovators for the Public and Youth Venture, a world renowned leader in promoting social entrepreneurship, whom provided AYUDA with its initial seed funding. Today, AYUDA is housed within Ashoka’s global headquarters as an example of a sustainable model of youth-led social entrepreneurship.
When your donor funding runs out how will your idea continue to live?: Key elements of AYUDA program sustainability include: 1. Innovative Funding Model- AYUDA’s programs are substantially funded through an earned income stream resulting from volunteer fundraising that covers both the volunteer costs of participation and subsidizes overall program costs.  The fundraising requirement also trains volunteers in advocacy and social entrepreneurship.   AYUDA’s operation goal is to have volunteer fundraising approach 100 percent of operation costs, allowing additional revenue (ie, grants and events) to contribute to organizational development. 2.  In-Kind Donations of Medical Supplies & Equipment - Medical supplies and equipment represent a large portion of local program budgets and AYUDA works to ensure Local Partners do not have to pay for such prohibitory costs (which are usually free to diabetes camps in the US). 3.  Partnerships with Other Organizations- AYUDA has worked to establish successful partnerships with a variety of institutions, including international organizations, pharmaceutical companies, diabetes camps and hospitals.  These partnerships play an essential role in promoting AYUDA’s programs, recruiting and identifying volunteers and acquiring in-kind diabetes medical supplies.

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Sickle Cell Disease Medical Care in Sub-Saharan Africa: The Need to Decentralize the Competencies

Author(s): Dominik Schmid1, Mohamed Cherif Rahimy1
Affiliation(s): 1Médecins du Monde Suisse
Name your project or intiative: Sickle Cell Disease medical care in Sub-Saharan Africa: the need to decentralize the competencies
1st country of focus: Benin
Relevant to the conference theme: Non-communicable chronic diseases
Summary: Sub-Saharan Africa is particularly concerned by Sickle Cell Disease (SCD) for which curative treatment doesn’t exist. This disease is responsible for a mortality rate higher than 20% for pregnant women and higher than 50% for children under 5 years old. These underestimated, unknown or even ignored risk factors for this disease are never issued in statistics. Nevertheless, in 2006 the WHO recognized it as a public health problem. The first Sickle Cell Disease research, screening and care Center has been created in 1993 in Benin. The founder and director, Pr. Cherif Rahimy, is a worldwide well known hematologist and SCD specialist. He has asked Médecins du Monde Suisse to create decentralized branches of the initial Center in the country.
What challenges does your project address and why is it of importance?: According to the WHO, Sickle Cell Disease is particularly prevalent amongst the populations coming from Sub-Saharan Africa, India, Saudi Arabia and Mediterranean countries. It seems that the geographic distribution of this disease could be explained by the fact that it provides a better level of resistance to malaria but this mapping is changing because of the migratory movements. Thus, Sickle Cell Disease is today the first genetic disease in France (Bardakdjian-Michau, 2008). Although it affects 4% of the population in Benin, Sickle Cell Disease is still not well known and perceived as something shameful that has to be hidden. The lack of diagnosis and awareness of the complication caused by this disease explains the delays in care resulting in permanent consequences and a reduced life expectancy, especially for children between 0-5 years old. This statement is overwhelming considering that with a minimum of medical follow-up, a significant portion of those children affected by the Sickle Cell Disease could have a normal life.
How have you addressed these challenges? Do you see a solution?: In 2000, a national program to fight Sickle Cell Disease started which was aimed to open many decentralized branches of the Sickle Cell Disease medical care center settled in Cotonou since 1993. The Médecins du Monde Suisse project is structured in two consecutive phases: the first phase is to create branches of Sickle Cell Disease care services according to the model of the Cotonou Center and under its supervision. Concretely, the aim is to establish those branches in Department Hospital Centres and to develop the means and competencies which are needed to give medical care to the population affected by Sickle Cell Disease. Thus, the first decentralized branch, opened in Abomey in November 2010, is now offering a neighborhood service to the populations living in the Borgou’s and Alibori’s areas. The medical care of the disease can be achieved through two simple and inexpensive methods which reduce morbidity and mortality. A systematic screening of all pregnant women and infants and a follow-up program completed that strengthens families’ awareness would help achieving these reductions. The second phase would undertake to communicate the existence of these branches to the peripheral hospitals and to the health workers so that the sick pregnant women or the affected infants would benefit of these services.
How do you know whether you have made a difference?: The Pr. Cherif Rahimy is the director of the research, screening and medical care Center of the Sickle Cell Disease in Cotonou. He is a specialist of this disease and the studies he has published show that appropriate medical care of the Sickle Cell Disease gives spectacular results. He has enabled a reduction of the maternal mortality from 27% to 10% and of the infant-juvenile mortality from 50% to 2% (Rahimy and all., Blood, 2003; Rahimy and all., Blood, 2009). His work underlines the importance of pre-emptive and neonatal screening actions in the Sickle Cell Disease medical care and in the improvement in the life quality ofthose affected. Moreover, the attendance statistics of the first branch show encouraging results and the current outreach campaign should lead to a progressive increase in the number of consultations. In ten months, the branch only registered one newborn death, which tends to indicate that the outreach activities developed by the medical staff have a positive impact on the reduction of the maternal and juvenile mortality rate.
Have you or the project mobilized others and if so, who, why and how?: The project in Benin was possible thanks to the occasional and regular cooperation of diverse actors at the national, departmental and local level. In particular, the research, screening and medical care Center of the Sickle Cell Disease in Cotonou constitute the main developer acting at the national level and under the authority of the Health Department. A collaboration with the NGO « Terre des Hommes » in Abomey to disperse the knowledge to the health worker is effective. Finally, the Beninese parental association « MUFELD » (United Hands of Active Families in the fight against Sickle Cell Disease) also collaborated with the project and offer a discussion room to the families of concerned patients.
When your donor funding runs out how will your idea continue to live?: The project commenced at the request of Pr. Cherif Rahimy and is a part of an overall national strategy. All of the medical staff recruited are from Benin and an agreement has been signed with the Health Department stipulating that after 2 years the medical staff salaries will be covered by the Health Department. The Pr. Cherif Rahimy, who in charge of the project, assures medical competency of the project. The expertise of the Cotonou Center, leaded by the Pr. Cherif Rahimy, is renowned at the national and international level: doctors from neighboring countries are trained there and the dissemination of this competency through the country is assured by the creation of decentralized branches in the Department Hospital Centres. The capitalization and the modeling which took place with the implantation of the first branch in Abomey enabled a new phase, which anticipates the opening of a new branch in Parakou (center of the country) in 2013. An extension of the project in other areas of the country and other countries in the Sub-Saharan Africa is also imaginable.

Clubs for Diabetics and Hypertension in Later Life: Bangladesh

Author(s): Shahidul Hoque1, Ariful Moula1, Mohammad Iqbal1, SMA Hanifi1, Mijanur Rahaman1, Abbas Bhuiya1
Affiliation(s): 1International Centre for Diarrhoeal Disease Research, Dhaka, Bangladesh
1st country of focus: Bangladesh
Relevant to the conference theme: Equity and empowerment
Summary (max 100 words): The burden of chronic disease is high in low and middle-income countries and is predicted to increase with the ageing population. Bangladesh, one of the poorest nation in the world, is in a transitional phase where it faces an alarming increase in chronic disease of its population. Community based and targeted behavior change intervention by engaging people with chronic condition in the forming and running local clubs for prevention and management of disease is cost effective and sustainable.
Background (max 200 words): Diabetes and hypertension are among five leading risks for mortality in the world. 58 million people died globally from all causes in 2005; 35 millions of these deaths were attributable to chronic disease, of which 80% occurred in low and middle income countries. Diabetes, hypertension and associated complications pose major healthcare burdens worldwide and present challenges to patients, healthcare systems and national economies. The prevalence of diabetes (6.9%) and hypertension (12%) in Bangladesh are still low in comparison to the developed world but are increasing with the changing age structure and life style changes. Reported increased deaths due to non- communicable diseases in Bangladesh are attributed to low levels of physical activity and below adequate levels of vegetable and fruit intakes.   Lifestyle modification and taking non-pharmaceutical, biomedical measures may prevent the rapid increase of disease and subsequent risks of mortality. The absence of effective and community based behavior change interventions warrant a model to be tested.
Objectives (max 100 words): To study the possibility of engaging older people aged 40 years and above in the self initiated clubs for lifestyle modification (regular walking groups) and raise awareness of behavior change initiatives that manage and prevent diabetes and hypertension. Specific:  a) Initiate testing blood glucose and blood pressure in order to raise awareness about diabetes and hypertension.  b) Motivate older people identified as diabetic/hypertensive and at risk, to participate in the formation of clubs and their activities. Health education on how to prevent diabetes and hypertension such as engaging in walking groups; changing food, life habits and discussing the experiences in clubs.
Methodology (max 400 words): The study was carried out in December 2009 at Chakaria, a remote southeastern coastal sub district of Cox’s Bazar in Bangladesh, where ICDDR has engaged in research and community empowerment activities since 1994. There are seven village health posts established by the local community by their own initiative. Two VHP's were selected from three (old) wards in each catchment, one ward from each VHP catchment and all the households of the ward were covered for listing and screening people aged 40 years and above.  All those belonging to the selected age group in 2,842 households were invited to participate in the screening sessions. Trained community paramedics and midwives were responsible for measuring blood glucose and pressure. Participants first tested for blood glucose, were asked to take rest for half an hour, and then their blood pressure was measured. The persons who had blood pressure above 140/90 (increase either systolic or diastolic) asked for re-testing one week later. If blood pressure was found above 140/90 (increase either systolic or diastolic) again it was diagnosed as a case of hypertension. A reading of 100 mg/dL to126 mg/dL fasting blood glucose suggests pre-diabetes, indicating an increased risk in developing full-blown diabetes. Screened persons mobilized to form clubs/organizations in respective areas. A thorough motivation was given to make them understand the benefits collective action to prevent/control the consequences of their chronic condition. Person who did not have the condition, but were at risk, were also invited to join the clubs. The club members sit together in every two weeks to monitor their blood glucose/pressure and discuss their problems, set individual and collective goals and plan for action. Collaborating with VHPs, regular morning walk sessions were initiated and maintained.  Meetings were facilitated to discuss life experiences, take blood glucose/pressure and respond appropriately. Narratives of club meetings and experiences were recorded and analyzed. Health behavioral practices of club members were observed. A format was used for recording blood glucose, pressure and socioeconomic condition of participants.
Results (max 400 words): By June 2011, 17 (female 10, male 7) clubs of diabetic and hypertensive patients have been formed. One hundred forty five meetings of these clubs have been held. Most meetings discussed walking and life style modification. All members (n=426) check their blood glucose pressure at the meeting and consult a graduate physician with a mobile phone when needed. Forty five percent of club members walk together with fellow members. Most of the members who participated in walking sessions regularly expressed satisfaction of the maintenance of good health through walking groups. In total, 3350 people aged 40 years and above participated. More than half (1877) participated in screening. Among the people aged 40 years and above participated in screening sessions 532 had hypertension, 110 diabetes and 29 had both conditions. It was observed that females are more likely to at risk of hypertension compared to their male counterpart.
Conclusion (max 400 words): It is possible to mobilize the aged people under a common platform to take collective initiative and work together to reduce the risks of chronic disease condition with the meaningful participation of local organizations. More research is needed to observe and link these clubs of aged people to government services. The model was effective.

State-NGO Partnership to Improve the Prevention and Management of Diabetes in Mali

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Author(s): Stéphane Besancon1, Sidibe Assa2, Ibrahim Nientao2
Affiliation(s) 1ONG Santé Diabète, Bamako, Mali, 2Service d'endocrinologie et de diabétologie, Hôpital national du Mali, Bamako, Mali
1st country of focus: Mali
Relevant to the conference theme: Non-communicable chronic diseases
Summary: Mali is one of the poorest countries in the world and has already a diabetes prevalence of 3.3% (Diabetes Atlas, 4rd edition, 2010). In Mali Diabetes is a major cause of death, the leading cause of blindness, and results in 60% of non-traumatic amputations. Despite the limited human resources to improve the care of people with diabetes, Mali has set up pilot approaches, based on close collaboration between the NGO “Santé Diabète” and the Moh of Mali, focusing on decentralization of care, access to medicines, education and prevention
What challenges does your project address and why is it of importance?: Diabetes is a chronic condition affecting more than 250 million people worldwide and kills 3.8 million people per year (Diabetes Atlas, 4rd edition, 2010). According to the International Diabetes Federation (IDF) in 2025, diabetes will affect over 380 million people, making it one of the leading causes of disability and death worldwide. Developing countries will be most concerned by the pandemic,as they will account for 76% of diabetics in the world. This epidemiological transition from “rich” countries to "poor" countries is mainly due to changes in lifestyle including increasing urbanization leading to a nutrition transition, decreased physical activity and a sharp increase in overweight. In West Africa, the alarming increase of diabetes will affect social and economic conditions as the disease affects people during their most productive years of life. The cost of diabetes care and the lack of human resources to handle the increased number of patients will be a major obstacle to the achievement of the Millennium Development Goal (MDG). Prevention of risk factors for the disease, as well as access to care, treatment, education and care of diabetes complications, is the key challenge addressed by the approach developed in Mali.
How have you addressed these challenges? Do you see a solution?: This approach is based on strengthening of the health system through 5 strategic ways:- Strengthening of human resources- Availability of drugs- Accessibility of drugs- Analysis and biological measures and Primary prevention and therapeutic education 1) Strengthening human resources for diabetes management- Ensure reference to the highest level (national hospitals). Creation of a specialization on endocrinology (4 years) and on diabetes (1 year). Establishment of postgraduate training course - Provide referral management at secondary level.  Annual program of training for referring doctors in diabetes management and its complications in regional hospitals and health centers. Annual program of training for doctors in the sanitary districts for the management of diabetes and some of its complications.  Training for other doctor and paramedics on risk factors for diabetes and diabetes screening • Analysis and biological measures- Capacity building at different levels. Hospital: technical support for further analysis in endocrinology. Regional hospitals and health centers: technical support for screening and treatment of diabetes and some complications (diabetic foot, retinopathy) Comminatory health center:  screening and management of uncomplicated diabetes. 2) Drugs - Availability: represents both the ability to develop new drugs that meet the needs but also to make them available in a given country. Work with pharmaceutical companies and generic manufacturers as well as the national pharmacy in Mali so that private wholesalers can make available the desired treatments for diabetes and its complications. 3) Accessibility: is divided into geographical and financial accessibility. The product is available for a patient throughout a given territory at a price at which the patient can buy. Work on two fronts: the negotiation of price initiative differentiated with pharmaceutical companies and work with manufacturers of generic products. Support the national pharmacy in Mali for the expression of needs and respect for the master plan of supply at different levels of the health pyramid. 4) Primary prevention. Once the system of management of diabetes is in place :• Increased knowledge of risk factors for diabetes and other NCDs common risk factors and screening (in practice diabetes and hypertension) with the referral of positive cases to the diabetes consultations. 5)  Therapeutic education- Included in the training programs for capacity building in this area. Establishment of a specific therapeutic education program in the health structures with the diabetes consultations
How do you know whether you have made a difference?: In 2004 Mali only had 2 specialized doctors (1 diabetologist and 1 endocrinologist), consulting in 3 national structures located in the capital Bamako. The problems faced were the following:  lack of adequate material (glycaemia readers, control strips…) which delayed the patients’ diagnostic and mades follow-up difficult, medication was often lacking in the central medical stores, patients provided themselves with products from private pharmacies at a much more important cost (eg: 12$ for insulin vial, 6$ for OAA, 3 $ for glycaemia controls). there was no specific program of prevention and less than 10 patients with type 1 diabetes were followed (with a life expectancy of 1 year at the testing time). The  situation of Mali at the end of 2010 is as follows:  the training of 10 doctors and 20 nurses in specialized services, training of 18 diabetes referral doctors for the different regions, training of 557 doctors and paramedical staff (nurses, midwives etc ...), consultation and management for over 3000 patients with diabetes in 7 regions of Mali and the District of Bamako. For each diabetes consultation there is availability of the testing equipment, educational materials and medicines, the cost of insulin has lowered by 48% (100UI bulb from 6200 francs CFA to 3800 FCFA),  there has been an average lowering of the prices by 10 of oral diabetes pills (20 pills from 2,500 FCFA to 250 FCFA), a specific program has been established for the management of diabetic foot and more than 500 patients with diabetic foot were managed in 2009 at the peripheral level, 95% were followed without referencing and/or amputation. There were 114 follow-up visits at the homes of patients with diabetic foot, the establishment of a therapeutic education program, the establishment of a prevention program that affected over 120 000 people in three regions of Mali as well as the establishment of a specific prevention program in schools affecting more than 4000 students.
Have you or the project mobilized others and if so, who, why and how?: This close cooperation between the state and NGOs for the implementation of actions has: Strengthened the mobilization of local authorities against diabetes, strengthened the mobilization of many donors and established an extensive network of international partners to support the fight against diabetes - France: Pr Halimi, Pr Vialettes Dr. Debussche, Prof. JJ Robert ... - World: Prof Dr Silink (Australia), Professor Delisle (Canada), Professor Jonathan Brown (United States), Pr Belhadj (Oran - Algeria). The Associations include: AFD - Luxembourg Association of Diabetes - Diabetes Association of Australia - Team Type 1 etc .
When your donor funding runs out how will your idea continue to live?: The interventions are part of the Malian national policy which allows a gradual withdrawal of actions for the Malian state

Affordable Diabetes Care: Cambodia

Author(s): Maurits van Pelt1
Affiliation(s): 1MoPoTsyo, Phnom Penh, Cambodia
Name your project or intiative: Affordable Diabetes care in Cambodia...
1st country of focus: Cambodia
Relevant to the conference theme: Communicable chronic diseases
Summary: In 2005 a mixed team of experts created a local Cambodian NGO to address the lack of information available for Cambodian diabetics to help them become successful self-managers. Over time, some of the patients became peer educators training other patients in self-management. Active screening of marginalized populations for diabetes and high blood pressure resulted in empowered communities of chronic patients with both a structure and a sense of agency. The innovative strategy remedies market failure  as the responsive services keeping price levels 3 to 5 times below the prevalent market prices. With scale-up it appears financially sustainable even in a developing country such as Cambodia.
What challenges does your project address and why is it of importance?: Most of the country’s one million people with diabetes and high blood pressure are unaware of their condition. Adequate care is unavailable or prohibitively expensive as most patients live below USD 2 a day. Premium levels for community based health insurance do not allow coverage of chronic patient routine health care costs. The problem is not just financial. Since 1993, when Cambodia’s development aid embargo was lifted, almost no attention has been given to Noncommunicable Disease. Twenty years later, Cambodia lacks the health care system and health work force able to respond to the needs of its population. Attitudes of doctors and health workers towards patients generally are top down. With chronic patients unable to get public care and vulnerable to exploitation by unscrupulous private providers, many non-poor households eventually fall into poverty when chronic disease slowly and prematurely bring down a bread winnder of the family. Mistrust in health services is so high that chronic patients only seek medical care when it is much too late. With the international priorities remaining firmly focused on “priority interventions”, there is also no intention to create a new and costly professional medical workforce to deal with the growing burden of NCD.  International public policy evidence points towards addressing NCD through primary prevention. But what can be done for Cambodia’s one million DM and High Blood Pressure patients?
How have you addressed these challenges? Do you see a solution?: In 2005, A Cambodian NGO was established to detect, register and train poor diabetes patients in urban slums how to self manage their diabetes with a focus on lifestyle improvements and self-measuring skills.  Together with the first diabetes patients, the educational self-management materials were adapted to the local context.  The NGO trained the first 2 diabetic patients to become Peer Educators. They were able to find other diabetes patients in the slums using a combination of urine glucose strips for postprandial screening and a handheld blood-glucose meter for confirmation blood glucose testing. The intervention expanded from 2 to 5 urban slums. In each of 5 urban slums a trained community-based Peer Educator resided. Equipped with regularly supplied materials he/she hosts a home weekly meeting of registered people with diabetes who gather for about an hour in the early morning before they go to work. These patients weigh themselves, measure their blood pressure and blood sugar and share their experiences and the latest news. For patients who need to see a Medical Doctor, the Peer Educator can make an appointment at the first opportunity for consultation.  The Peer Educator is someone with diabetes who has received a 5 to 6 weeks Peer Educator training and who must pass the peer educator exam organised by the NGO before being qualified. Once back in their own community with the equipment kit and after introduction at the local public health center, the peer educators start to screen the adult population of about 5,000 people. The first goal is to register 50 DM and 200 HBP patients, most of whom are unaware of their disease until their diagnosis by the peer educator. The peer educators report monthly on the activities, as gradually these patients are detected, registered, counseled and trained in self-management and remain in follow-up care. During the early years of the intervention formal medical services were being provided by foreign NGO’s operating as medical charities. The intervention initially only provided diabetes education and was merely complementary to existing clinical services in the capital Phnom Penh. However after a couple of years the charity programs ran out of funds and as the professional health staff were left to fend for themselves they began to charge unaffordable prices for basic services. At that moment, the NGO took an unusual step. Instead of demanding that more affordable services be provided, the NGO decided to train some of its peer educators so they could become diabetes care managers able to organise their primary care services in public facilities such as a self-help group charging the registered members fees for services. Shifting more and more tasks from professionals to lay health workers increased the model’s scope of services and the resulting revenue. Rewarding trained patients with a combination of immaterial and financial incentives maintains a complementary highly motivated and effective health work force without the conflict of interest. Together with other more efficient resource allocations, it reduces costs of care and prices of services 3 to 5 times.
How do you know whether you have made a difference?: Every half year, one network of Peer Educators is paid to perform an assessment of the work of another Peer Educator Network. The NGO selects a random sample of 19 diabetes patients who are being followed up by each peer educator. The visiting Peer Educator Network evaluates these patients by assessing their blood sugar, blood pressure, weight, feet, their self-management book and their knowledge of how to self-manage. The Peer Educators whose patients show to have the best outcomes in terms of knowledge and bio markers get the highest financial rewards. The elaborate questionnaires used for these re-assessments help to inform the managementabout weaknesses in the program.  Average fasting blood sugar and postprandial blood sugar of new diabetes patients is typically 200mg /dl  and 300 mg/dl when they register. However the re-assessed samples show significant reductions to 130 mg/dl and 200 mg/dl respectively on average, indicating overall improvements in blood sugar control. Also blood pressure improves : only 33% of diabetes patients have blood pressure below 130/80 mm Hg at time of registration. This normally improves to over 50% at time of re-assessments. More than 90% of patients are satisfied with their peer educator. Drop out is low. More than 80% of patients report spending less on their health than before they registered. When asked what type of food raised blood sugar and which ones do not, many patients show significantly increased knowledge that helps them lower their blood sugar naturally. Of particular importance in Cambodia is the  highly glycemic (>90) white rice variety that is commonly eaten. For this reason, the NGO encourages its members with diabetes to replace it with less polished rice richer in protective vitamins. Also more than 80% of patients report to be exercising more than before they registered. Over the years the average BMI of the membership remains stable.
Have you or the project mobilized others and if so, who, why and how?: Expansion and replication of this project has been taking place in different dimensions. Geographically and in scope of disease and scope of action; Per 25-08-2011 there are in total 3329 people with diabetes registered with MoPoTsyo patient information centre. Each patient information centre is part of a local network supervised by the Diabetes Program Manager, a supervisor who also has diabetes. The first urban network consists of 5 slum areas with a peer educator. The first rural Diabetes Network started in June 2007 in Ang Roka Operational District in Takeo province. After 18 months that experience began to be replicated to the 4 remaining Operational Districts of Takeo province.  Our aim is to cover the whole province, so we end up with a sustainable provincial network of people with diabetes. In late 2009, we received funding to set up a network in Banteay Meanchey province and in 2010 we began the intervention in Kompong Speu province. In total there are 67 such patient information centres in Cambodia where a diabetic peer educator is actively finding new patients, following up the existing ones and helping them to get access to the health services that they need.  Also, the scope of the intervention increased. Since 2009 the NGO also registers people with high blood pressure who do not have diabetes. In addition, the NGO developed its range of medical services from organising medical consultations to setting up a “revolving drug fund” that procures its generic medication abroad from international suppliers and which has its own registration and distribution system, but in close collaboration with the Ministry of Health’s own government supply. The collaboration allows the 2 systems to exist side by side complementing each other using much of the same health infrastructure with exemplary efficiency.  Since 2010 the NGO also operates a laboratory service for its members. Thanks to sharply reduced prices and the fact that the blood samples are collected in the community, the threshold for utilisation by the members is low. An international external quality assurance system (EQAS) helps monitor and inform the management about the quality of its range of biochemistry tests. This in turn increases the confidence of the prescribing medical doctors in the test results. Since 2011, the NGO has begun to collaborate with eye hospitasl to promote screening for retinopathy among its own members with more than 5 years diabetes. In 2011, active additional screening for proteinuria together with the lab results on serum creatinin are helping to inform the peer educators on who is at risk of CKD and alert the patients to consult again with prescribing doctors so they can adapt the treatment to address early signs of Chronic Kidney Disease.
When your donor funding runs out how will your idea continue to live?:  Donor funding is used as investment in order to allow the PEN’s to grow so the system reaches a break-even point at which all the expenses can be recovered from the revenue generated from the 2 main revenue sources: sale of routine medication to the contracted pharmacies and the provision of laboratory services to the members. With current levels of utilization of services by the members, this break-even point will be attained when the NGO covers 30 districts of the 77 existing ones. However, if the strategy is to make High Blood Pressure patients adhere to their medication works and external funding pays for the voucher scheme to help the poorest adhere to their prescribed medication, this break even point will be reached in a smaller number of districts. The key messages are that financial sustainability of the diabetes and high blood pressure care model is within reach and fits well with the country’s primary care system. It requires some investment to set up the Peer Educator Networks in the districts where there are none at the moment and insufficent complementary financing has not been achieved. Other questions are the long term governance of the model and how it is best linked with the 2 other main government health programs such as the Mother- and Child Health Care program and Communicable Disease program. Local health authorities and provincial authorities have spotted the potential of the model. The decentralized planning process allows them to include it into their annual operational planning for the near future.