Diabetic Retinopathy Awareness and Prevention Programme (ARUDRAPP)
Our research, involving over 4,200 patients from the UK and overseas, identified various culturally and ethnically specific, as well as other factors that negatively impact the control of diabetes and increase the risk of blindness.
Based on this evidence, we developed culturally relevant video intervention programs in various ethnic languages, which to date have benefited more than 150,000 South Asian people living in the UK, as well as in other parts of the world including Nepal and India.
Our research has led to: (i) the development and dissemination of evidence-led, culturally and linguistically appropriate awareness and lifestyle interventions by policy makers and community organisations; and (ii) change in patient care practices by healthcare professionals.
Partners
Our research within the UK identified various barriers in different communities.
We have disseminated key information on diet, lifestyle and the importance of retinal screening via interviews on radio and television including ITV News Anglia, British Forces Broadcasting Service, Gurkha Radio, Salaam Radio (a Muslim community station), and Online Services (OS) Nepal.
We were invited by South Asian community groups and clinicians and the co-production of short diabetic awareness programmes appropriate for the UK in different Asian languages, addressing the need for culturally and linguistically appropriate training programmes.
The programmes, delivered in the form of video clips in the Asian language cover the four themes of good diabetes control; dietary advice on Asian food; physical activity; and the importance of retinal screening – all directly addressing the lack of knowledge around diet and exercise and language barriers that was identified by our research.
The videos were disseminated jointly by our team and community teams at the grassroots level at community centres, mosques, religious festivals and community gatherings across the country. The programme reached various ethnic communities across the UK.
Collaborators and community champions
- Ghulam Shabbir, Chairman, Pakistan Community Association of Peterborough
- Dr Dilip Kumar Yadav, Health Coordinator (2017-2019). Non-Residential Nepalese Association (NRNA), UK
- Lil B Thapa, Chairman, Shanti Nepalese Community, Birmingham, UK
- Bharat Thapa, Chairman, Nepalese Community, Hayes and Harlington, London
- Harish Jyawali, General Secretary, Bexley Nepalese Community, London
- Asma Sajid, Dietician, Cambridgeshire and Peterborough Foundation Trust
- Yasmin Ilahi, Manager, Gladstone District Community Association (GLADCA), Peterborough
- Qamar Nizam, Trustee, Khidmat Sisters, Cambridge
- Tulat Raja, Cambridge City Council
- Mohammed Hanif, General Secretary, Birmingham Central Mosque, Birmingham
- Rokeya Noor, Project Co-ordinator, My time Active, London
- Fatima Nessa, Project Co-ordinator, Shanthona Women’s Group, Luton
- Dr Manzar Saeed, Consultant Ophthalmic Surgeon
- Fauzia Sattar Occupational Therapist, Cambridgeshire County Council
- Dr Afshan Salim, Diabetic Lead, Birmingham
- Dr Hena W Haque - Health Promotion Professional, Cambridge
- Keshav Khatiwada, Peterborough Nepali Society
- Hanif Pathan, Silver Star Diabetes
- Lionah Musengezi, Southwest Central PCN
- Renée Robey – Engagement officer at Healthwatch Essex
- Maria Medina - Community Engagement & Partnerships Officer, NHS Basildon and Brentwood Alliance
- Iwona Kalisz - Operations Coordinator, Achieve Thrive Flourish, Southend-on-Sea
- Owen Richards – Chief Officer, Healthwatch Southend
- Caroline Tyrrell-Jones – Communities Programme Manager, Healthwatch Cambridgeshire and Peterborough
- Mr Isaac Ayamba, Cambridge African Network, Cambridge
- Ms Tanesha Baxter, South Essex African Caribbean Community, Basildon
- Dr Abiodun Popoola, Church on the Rock, Westcliff-on-Sea, Southend-on-Sea
- Boglarka Nemeth, Health Improvement Practitioner, Southend Borough Council
Outreach activities
Peterborough
Members of the Pakistan Association Community of Peterborough at VERI's workshop about diet, good control of diabetes and retinal screening uptake to reduce the risk of diabetic retinopathy, February 2020.
Following one event, the chairman of the Pakistan Community Association of Peterborough stated that 90% of attendees found the workshop very useful. Participants commented:
"We will share this knowledge and awareness about diabetes and importance of attending retinal screening to our family members and friends who have diabetes."
"I now know that I should go for eye screening."
"Please can we have some more of these sessions?"
Aldershot
Dr Raju Sapkota talking to a resident about diabetes and diabetic retinopathy at an annual health camp organised by Non-Resident Nepali Association UK, May 2019.
A participant attending one of the workshops organised by the Non-Resident Nepali Association stated:
"We were ignoring letters by doctors inviting to have regular eye check-ups, but we will not ignore them now - we have now had our eyes photographed and we will continue to do so on a regular basis."
London
Participants at a diabetic workshop organised by Bexley Nepali Society, London, February 2020
"We now know that diabetes can damage our eyes silently. Therefore, we will not ignore any letters that are sent to us asking to attend diabetic eye examinations."
"We did not know that diabetes can become worse if we are stressed and that we can go blind if diabetes is bad."
"I did not know that there is a difference between having my eyes tested for spectacles and for diabetes - I know now."
Birmingham
"We did not know that if diabetes is not controlled, the back of our eyes can bleed and our vision will be disturbed significantly."
Cambridge (Central Mosque)
L-R: Prof Shahina Pardhan giving a presentation; Hena W Haque (community champion) talking to a diabetic patient; Prof Pardhan, Hena, Dr Sapkota and Iman of Cambridge Central Mosque
Prof Pardhan and her team were invited by Cambridge and Peterborough Integrated Care Partnership and new Cambridge Central Mosque to deliver a series of talks and workshops at their Diabetes Wellness Day 2022, based on VERI's research on the high risk of diabetic retinopathy in South Asians in the UK.
The event was attended by over 400 people from across the region.
Cambridge (Bangladeshi Ethnic Forum)
Right: Prof Pardhan and Dr Sapkota with participants at the Cambridge Bangladeshi Health Fair
Prof Pardhan and Dr Sapkota helped improve health literacy around eye complications at the first-ever Cambridge Bangladeshi Health Fair at Meadows Community Centre in Arbury on 20 June 2022.
Visitors were offered free diabetic eye screenings and could access a culturally appropriate video training programme in Bengali language developed by VERI.
The health event was organised by Cambridge Ethnic Community Forum in Partnership with the Karim Foundation and Clinical Commissioning Group (CCG). The event was hugely successful in increasing awareness about diabetic-related eye complications in those most at risk.
Southend-on-Sea (June 2024)
Dr Sapkota addressing participants at the Southend-on-Sea workshop in June 2024
We conducted a workshop in Southend-on-Sea on 7 June 2024, which was attended by 30 people with diabetes. Participants were keen to watch the video and provided positive feedback regarding the importance of such educational programmes to gain more understanding of lifestyle adjustments and annual eye screening. One participant stated:
"I had never had such health educational advice before, to improve diabetes outcomes."
Southend-on-Sea (April 2024)
Dr Hugo Onumajuru delivered an effective, patient-centred community workshop to improve eye health literacy among minority populations at a church event in Southend-on-Sea on 7 April 2024. The workshop was well-attended and well-received.
The church pastor, Dr Abi Popoola, said:
"The entire church people were grateful for your … presentation on eye health and the importance of retinal screening especially in people with diabetes".
Prof Pardhan said:
"Our workshops, held at grassroot levels, are important part of our overall ambition to reduce eye health inequality in those who are most at risk."
Peterborough (February 2024)
Dr Sapkota was invited to talk about diabetes and its eye complications by the Peterborough Nepalese Society on 24 February 2024. The talk focused on improving community awareness of diabetes control and how to self-care for diabetic retinopathy. The event was delivered in the Nepali language and more than 60 people attended.
The Chairman of the Peterborough Nepalese Society said:
"Our members found the event to be very beneficial, as you so clearly conveyed a very important message on how to look after diabetes and our eyes in very simple and easy-to-understand Nepali language."
Bristol (September 2023)
Dr Sapkota and Dr Pamela Knight from ARU's School of Nursing and Midwifery organised a community workshop in Bristol on 19 September 2023, which was attended by 21 Black people with diabetes.
Participants were shown the diabetic education videos and PowerPoint slides that addressed specific barriers faced by Black people in accessing and utilising diabetic health care services.
Participants stated:
"The workshop was very informative and the video education material was easy to understand. Future similar events would be useful in refreshing our understanding about diabetes and its self-care."
The workshop was also publicised by BBC Radio Bristol, where Dr Sapkota and Dr Knight talked briefly to give an overview of the workshop.
Cambridge (July 2024)
On 19 July, Diabetes UK hosted the Living with Diabetes Day in Cambridge, which aimed to provide attendees with a day packed with information from specialists and health professionals in order to support them manage their diabetes.
Members of VERI presented about the importance of diabetic retinopathy screening to participants, and showcased the great work being done by ARUDRAPP to reduce blindness in ethnic minority individuals through educating participants and increasing the uptake of diabetic retinopathy screening.
VERI also hosted a workshop which allowed participants to get involved in screening using a fundus camera, watch a video on the importance of eye health and diabetic retinopathy, and ask any questions they may have.
This was a great event, which was well attended and enjoyed by all participants! A participant said:
"This is a very educational and brilliant health workshop. Thanks very much!"
Chelmsford (October 2023)
On 22 October, Dr Sapkota and Tarnjit Sehmbi attended the Family Science Day at Chelmsford Science Festival on ARU's Chelmsford campus. This was a great opportunity for families to have a fun day out and learn about science. The day consisted of keynote speakers, activities for the family, and workshops.
VERI held a fun and informative workshop on the impact of diabetes on the eyes, with activities suitable for all ages. The workshop was attended by over 40 people, with everyone wanting to get involved in the activities.
An important session that raised awareness of diabetic retinopathy and the impact this has on individuals was enjoyed by all. An attendee stated:
"We enjoyed the video and games; it has been informative."
Peterborough (June 2024)
Dr Raju Sapkota from VERI was invited to talk about diabetes and diabetic eye disease by the Peterborough Indian Society (Bharat Hindu Samaj) on 28 June 2024. Participants were shown a culturally adapted diabetic awareness video in Hindi developed recently by VERI. The event was attended by over 40 people. Participants and organisers found the event very informative.
"I now know more about the importance of regular eye checks…..The video motivated [me] to do more exercise."
"Thanks very much for today’s workshop. We had a very good response."
This work has the potential for a large nationwide study to examine how the behaviour change leads to improved patient outcomes.
Media coverage
To help improve awareness of diabetes and diabetic retinopathy. Professor Pardhan and her team have been interviewed by ITV Anglia, the College of Optometrists Podcast, Salam Radio, online services (OS) Nepal.com, British Force Broadcasting Service (BFBS) Gurkha Radio and Nepali Association in the UK. These interviews, which were also broadcast on social media, have been viewed more than 25,000 times.
Development of training
Professor Pardhan was invited by the The Diabetes and Endocrinology Association of Nepal (DEAN) and the Nepal Health Research Council to hold the first multidisciplinary workshop for professionals involved in the management of diabetes and eye complications in Pokhara.
This saw the development of a framework for a culturally-appropriate, multidisciplinary intervention programme to control diabetes and reduce blindness due to diabetic retinopathy.
The meeting with 25 people included representatives of DEAN and the Nepal Health Research Council, diabetic patients, and healthcare providers including a diabetes doctor, a dietician, an ophthalmologist, a physical activity instructor, and a behaviour change worker.
Diabetes awareness training, culturally appropriate to the Nepali context, was developed in the local language, to address the barriers identified by our research, which was validated using a randomized controlled trial. DEAN stated:
“This (research) has led to improved strategies [and]…an intervention to improve diabetic control."
In addition, the Diabetes, Thyroid and Endocrine Care Centre, one of the two major diabetic centres in Pokhara, Nepal’s second largest city, has used the training programme to improve awareness for all their diabetic patients attending clinics.
The training has benefited over 32,000 patients so far (hospital/community), of whom 89% requested retinal screening compared to 28% prior to the training (2018-2020). A randomised clinical trial showed that 98% of patients in the intervention group requested a diabetic retinal check within three months, compared to 36% in the control group. Since 2021, over 16,200 patients directly benefitted from the training workshops.
The programme is being delivered in 50 villages of Nepal by community champions in partnership with local council leaders and primary health post charges.
Prof Pardhan and her team with health care practitioners to develop the framework for the training program in Nepal
"This has led us to target those patients who are more at risk of blindness."
"This work has led to improved strategies ... we need to address the different barriers for an illiterate female compared to a younger working male."
Professor Pardhan, Dr Sapkota and healthcare professionals and collaborators at the Diabetes, Thyroid, and Endocrine Care Centre, Pokhara, Nepal
"The centre now delivers the training program to all newly diagnosed patients attending. Before training only 28% had their eyes photographed – now 89% have requested a retinal screening. This has already reduced the risk of blindness in over 50, 000 people."
The VERI team was invited by the Lions Club of Pokhara, Nepal to mark World Diabetic Day.
Informed by VERI’s recent research publication on sight-threatening retinopathy in patients most at risk, Dr Tirtha Lal Upadhyaya (right), from Gandaki Medical College and Diabetes, Thyroid, and Endocrine Care Centre, Pokhara, Nepal, stressed the importance of culturally-appropriate diabetic diet, exercise, lifestyle, and need for attending diabetic eye check-up to more than 100 members of the public.
This was very well received by participants.
"We learnt new knowledge about diabetes by attending the event, which was presented in simple Nepali language."
"We now know that diabetes can cause blindness, so we will not neglect to go to an eye doctor for check-ups."
Conducting community workshops in different villages of Nepal
We have developed a plan for improving diabetic literacy in hard-to-reach villages on how to improve control of diabetes and reduce the risk of diabetic blindness in collaboration with local council leaders and the primary health post in charges. These have been delivered in more than 20 villages.
"We did not know that diabetes can lead to blindness."
Pratishka Chalise and Deepika Karki from VERI delivering a retinopathy awareness programme to diabetic patients in Nepal
"I learned so much about how to take ownership of my diabetes and reduce my chances of going blind even before going to see the doctor."
"They [participants] said that this will obviously change their knowledge and they will apply this knowledge in their life to control the further complications of diabetes"
Partners
- Dr Tirtha Lal Upadhyaya, Endocrinologist, Gandaki Medical College and Teaching Hospital, and Diabetes, Thyroid and Endocrinology Care Centre, Pokhara
- Dr Robin Maskey, Vice-president, Diabetes and Endocrinology Association of Nepal (DEAN)
- Dr Bhojraj Adhikari, Vice-president, Nepal Health Research Council
- Dr Dipak Malla, National Academy of Medical Science, Bir Hospital, Nepal
- Tara Sharma, Dietician, Gandaki Medical College and Teaching Hospital, Pokhara
- Niraj D Joshi, President, Nepalese Association of Optometrists
- Dr Hara Maya Gurung, Ophthalmologist, Himalaya Eye Hospital, Pokhara
- Prof Nirmal Lamichhance, Director, Bhuvana-Govinda (BG) Hospital and Research Centre, Pokhara
- Hari Bahadur Gurung, Namarjung Health Post
- Dr Binod Baral, Thumsikot Primary Health Care Center
- Jay Prakash Bhatt, Mijure Health Post
- Amit Sapkota, Yangjakot Health Post
- Soniya Bishowkarma, Tarkang Basic Health Service Center
- Pratima Adhikari, Taprang Health Post
- Dr Rajan Kumar Sah, Chachowk Basic Health Service Center
- Santosh Poudel, Madhbesi Basic Health Service Center
- Kiran Babu Bhujel, Sikles Health Post
- Bhesma Pun, Dhampus Health Post
- Jamuna Poudel Kafle, Lahachowk Health Post
- Yubaraj Sharma, Rivan Health Post
- Dr Neha Neupane, Bhedabari Primary Health Center
- Navin Chandra Acharya, Machhapuchhre Health Post
- Lumre Laxman Dahal, Basic Health Care Centre
- Sakrij Lammichhane, Lwang Ghalel Health Post
- Anita Ghimire, Sardikhola Health Post
- Narayani Poudel, Lumle Basic Health Care Centre
- Diya Chantyal, Salyan Health Post
- Maiya Ranamagar, Simpali Basic Health Care Center
- Bindu Ranabhat, Lumle Health Post
- Rameshwor Baral, Research Assistant and Community Champion, Diabetes, Thyroid and Endocrine Care Centre, Pokhara
Partners in India have worked with us and used our training videos to improve awareness about diabetes and diabetic retinopathy in their patients using our videos in Hindi and other major languages.
Sankara Nethralaya, Chennai
Right: Dr Rajiv Raman from Sankara Nethralaya
With support from the College of Optometrists and Lions Club International, we collaborate with Sankhara Nethralaya Eye Hospital in Chennai to improve attendance for retinal screening. We developed innovative approaches to improving patient attendance in clinics.
The Sankara Nethralaya Eye Hospital, rated among the top four ophthalmic institutions worldwide and treating 17,000 patients annually with sight-threatening retinopathy, states:
"Our research has directly led to a system by which we now send text messages to all our patients to attend the clinics.
"We have developed a bespoke one-to-one counselling service for patients with sight-threatening retinopathy to explain the importance of regular attendance and treatment ... this has already improved attendance … and reduced risk of blindness in 90% of all the patients with sight-threatening retinopathy.
"Our partnership led to development of a bespoke one-to-one counselling service for patients with sight-threatening retinopathy to explain the importance of regular attendance and treatment."
"This has already improved attendance for retinopathy screening and reduced risk of blindness in 90% of all the patients with sight-threatening retinopathy."
Kurseong Sub Divisional Hospital, Darjeeling
Right: Dr Anupama Biswas from Kurseong Subdivisional Hospital
In Darjeeling, the training programme, developed in Hindi and Nepali, is being delivered to all patients with diabetes attending Kurseong Sub Divisional Hospital, a tertiary care hospital.
Historically, the uptake of retinal screening was historically as low as 20%. After the training was delivered to 26,556 patients, 88% (n=23,369) then requested retinal screening (2018-2020). Since then, additional 7450 patients benefitted from the training.
Right: Doctors, nurses and patients being trained on the diabetic awareness program, designed by Prof Pardhan and her collaborators at Kurseong sub-divisional hospital (Darjeeling). The training program is now delivered to all patients who attend the clinic
The programme has demonstrably improved knowledge and awareness of diabetic treatment and uptake of retinal screening. Patients reported:
"We thought our own herbal medicines are enough - now we know that we need to take the medicine given by our doctors."
"We will go and have a diabetic eye check today - we don’t want to go blind by delaying it..."
"I should go to my doctor instead of traditional healers for my diabetes."
Partner: Dr Zhiqing Chen, Ophthalmologist, Second Affiliated Hospital, Zhejiang University, Hangzhou
Our partnership in the eastern region of China, serving 600,000 outpatients annually from a catchment area of greater than one million square kilometres, has led to the development of strategies to address the significantly high profile of diabetic blindness in patients attending the eye clinics.
Working with Second Affiliated Hospital of Zhejiang University, which is the second largest hospital in Hangzhou (serving 600,000 outpatients in the country’s eastern region), we developed strategies to address the high level of diabetic blindness in patients attending the eye clinics.
Prof Pardhan gave a series of invited talks, and also organised a three-day seminar at Southern University of Science and Technology in Shenzhen that brought together 41 researchers from the UK and China, funded by British Council’s Newton fund, to brainstorm community-based solutions for vision and hearing problems. These led to the co-development of leaflets in Chinese for the hospital.
"This has highlighted the lack of awareness amongst diabetic patients on how important it is to look after their diabetes."
A long-standing partnership with Saiful Islam (Jahangirnagar University, Dhaka, right) has led to many research projects both within the area of diabetes and others including Covid-19 related research projects. Our research identified many areas that need addressing.
Saiful Islam said:
"We are keen to start the training videos in our local language in the community."
We have two major projects in Sri Lanka. Project 1 examines factors influencing knowledge, attitude, and practice of diabetes and diabetic retinopathy in collaboration with Dr Dimuthu Muthukuda (right, Senior Endocrinologist from Sri Jayewardenepura General Hospital, Colombo.
Project 2 comprises an eye health and diabetic retinopathy literacy awareness programme and an investigation into the feasibility of integrating a package of eye care interventions at primary care healthy life clinics, in collaboration with Dr Mangala Dhanapala, Dr Kapila Banduthilake, and Dr Dilip Liyanage from the Department of Vitreo-Retina, National Eye Hospital, Colombo and the Regional Directorate of Health Services, North-Central Province, Anuradhapura.
"My team is pleased to support any research projects and programmes regarding eye health that will be conducted in Sri Lanka by [VERI]. The research studies and programs will bring significant benefits to the citizens of Sri Lanka."
Working with Rajavithi Hospital in Bangkok on a number of research projects to address the low uptake of retinal screening delivered by Thailand’s national retinal screening programme, leading to more awareness about patients', family members', and healthcare providers' perspective on barriers and facilitators to diabetic retinopathy screening.
Pakistan has a high risk of diabetes and diabetes and diabetic retinopathy. Working with Dr Ahmed Abdullah (right) from the Health Services Academy in Islamabad, we have developed a program of research to examine health awareness and diabetic literacy in patients with diabetes. To date, over data from over 500 patients have been collected.
Our plans are to set up workshops using community champions and deliver educational videos developed in Urdu.
Partners: Dr Anabel Sanches, Dr Carlos Villaseñor
The prevalence of diabetes and complications of blindness including blindness is very high in Mexico. Our research showed a significant increase in change in diabetes over an 11-year period.
"I have collaborated with a healthcare centre and hope to [recruit] 300 diabetic patients by the end of this project."
We have partnered with Dr Yacoba Atiase (right) and her team from the National Diabetes Management and Research Centre at the Korle Bu Teaching Hospital. to study knowledge, attitude, and practice about diabetes and diabetic retinopathy control among patients in Ghana.
We have partnered with Theophilus Yakubu Danjuma Foundation Medical Centre (TYDF-MC), Takum, Taraba State, to study knowledge, attitudes, and practice relating to diabetes and diabetic retinopathy control among patients in Nigeria. The partnership also delivers diabetic video material to patients.
Dr Ebi Benjamin (right) said:
"[I would like to] communicate our satisfaction with our collaboration on this really important project on reducing the risk of diabetes and blindness."
We have been working with Dr Ngozika E Ezinne (right) from The University of the West Indies St Augustine, Trinidad and Tobago to examine factors influencing diabetes control and reducing the risk of blindness. Data collected to date show significant lower awareness around good control of diabetes and prevention of diabetic retinopathy.