Tayyab Afghani  ( Department of Orbit and Oculoplastics, Al-Shifa Trust Eye Hospital, Rawalpindi, Pakistan )
Samina Bano Khan  ( Al-Shifa Trust Eye Hospital, Rawalpindi, Pakistan )
Hassan Mansoor  ( Department of Eye Disease and Retractive Surgery, Singapore Eye Research Institute, Singapore )
Sana Nisar  ( Department of Ophthalmology, Al-Shifa Trust Eye Hospital, Rawalpindi, Pakistan )
Shehzad Waseem  ( Department of Ophthalmology, Fauji Foundation Hospital, Rawalpindi, Pakistan )

Using WHO questionnaire known as TADDS(Tool for Assessment of Diabetic Retinopathy and Diabetes Management System), a country wide survey was conducted to assess the health care system for diabetes mellitus (DM) and diabetic retinopathy (DR). This would also provide any evidence of the presence and usefulness of links between the two. A total of 190 key informants for DR and DM services from 47 districts were interviewed. The answers were reviewed and any disagreement was resolved through discussion with stakeholders’. The final results were disseminated. The results showed that diabetes is listed as a priority; national plan exists but programme has not been implemented. Health professionals are unaware about Ministry of Health guidelines. There is infrequent networking between DM and DR care providers. Transport and cost are the main barriers for accessing these services. Out of pocket expenses provide 55% of health care financing.

Keywords: WHO, TADDS, Diabetes, Diabetic Retinopathy, Health System.

DOI: https://doi.org/10.5455/JPMA.12450

 

Introduction

 

Pakistan is one of the top ten countries of the world for number of adults with diabetes.¹ These ten countries account for 67% of diabetics and 70 % of global healthcare expenditure on diabetes¹. According to the IDF Diabetes Atlas 9th Edition 2019, 463 million were living with diabetes in 2019. Another 374 million are at risk of developing diabetes. At least half of diabetic population is unaware that they have the disease. Projections estimate that by 2045, 700 million people will have diabetes. Four out of the five diabetics live in low- and middle income countries. About half of the 4 million people dying from diabetes are below 60 years of age.¹

The prevalence of diabetes (DM) in Pakistan has been recently estimated to be 17%.² There is insufficient data on the prevalence of diabetic retinopathy (DR) in Pakistan. The reported DR prevalence rates vary widely from 10.6% to 91.3%.^3-13 In a recent systemic review,³ the pooled prevalence of DR in Pakistan was found to be 28.78% in all diabetics and that of VTDR was 28.2% of all DR and 8.6% of all diabetics. Knowledge of diabetes risk factors, management, and care is low in Pakistan’s general population.¹⁴ A recent study from Pakistan that conducted analysis of 202 patients in 25 centers across the country found out that over three-fourths (77.2%) of the patients had never been assessed for DR.¹³

The World Health Organization (WHO) recommended stakeholder-based interviews for assessing DM and DR care systems at a national scale. Known as Tool for Assessment of Diabetic Retinopathy and Diabetes Management System (TADDS),¹⁵ this can help in estimation of available resources and their access to the patients in need and thus helping in improvement of theDM and DR health services. The current study presents the results of WHO-TADDS Survey in Pakistan that was completed in year 2015.

This study is the first of its kind in Pakistan using WHO TADDS survey. It will enable health authorities to obtain an estimate of available resources and their accessibility by patients in need and to plan improvements in health services related to DM and DR. In addition, it corresponds to the health system building blocks and allows WHO member states to generate evidence and conduct advocacy to improve eye health and prevent avoidable blindness.

The primary objectives of the study were to:

1.      Assess the existence, availability and accessibility of DM and DR health care services;

2.      Assess the existence and usefulness of links between management of patients with diabetes and diabetic retinopathy;

3.      Find out the problems at various levels of the health system in provision of eye care for diabetic patients;

4.      Apprise different stakeholders of those aspects of health system that needs priority for future research and development.

 

Methodology

 

The study was conducted from July to October 2015 using the semi-structured questionnaire -TADDS.  Proper approval was obtained from the Ethical Research Committee of the institution. The scope of study comprised of a national health systems approach and was not focused on individual care providers or institutions.

The TADDS consists of seven sections and 43 questions:

Section 1: Priorities, policies and programmes

Section 2: Service delivery

Section 3: Health workforce

Section 4: Health technology

Section 5: Health information management systems

Section 6: Health promotion for diabetes and diabetic retinopathy

Section 7: Health financing

Each section consists of both open and close-ended questions. At the end of each section, a Likert-type scale is given, ranging from 1(worst) to 4(best) along with matching answers. Each participant then independently chooses the most appropriate score that best represents the situation.

There are a total of 119 districts in the administrative units of Punjab (36), Sindh (29), KpK (34), Gilgit-Baltistan (10) and Azad Jammu and Kashmir (10). We aimed to include 50% of these districts which is equivalent to 60 districts. All the 119 districts were arranged alphabetically and were numbered in that order. Through computer generated random numbers, 60 districts were selected for the survey.  Fifteen of these districts were excluded because of inability to get written or telephonic response from the stakeholders for various reasons. From Baluchistan only the capital city Quetta could be included due to security reasons.Islamabad was selected as it was the capital making a total of 47 districts for the final compilation.

The national stakeholders and key informants for DR and DM services (Tables 1 and 2), were identified and interviewed.

The data was analyzed and results were shared with participants.A meeting  was held with the National Committee of Eye Health and to finalize the results and eventually submit them to the government of Pakistan and the WHO.

A total of 190 stakeholders were interviewed from 47 different districts (Table 2). Of these, 136 were from the public sector while 54 belonged to the private sector. In addition to health care professionals and patients, following categories of respondents were included as stakeholders.

•        Ministry of Health – National Coordinator for Prevention of Blindness

•        World Health Organization country office  - NCD programme officers

•        National Committee of Eye Health (NCEH) members

•        International non-governmental organizations (INGOs) involved in the provision of diabetes and eye care – Sigthsavers, Fred Hollows Foundation, CBM, and local Lions Clubs

The printed survey forms were posted to the selected professionals and on the  appointed date, direct face to face interviews were conducted either by the principal author (TA) or by the pre-selected volunteers who were earlier briefed about the survey and its contents. The filled in survey forms were then collected either directly or by post. This methodology was adopted for 142 professionals where as 23 professionals who had a regular access to the internet were requested to fill the survey forms and send them by email as an attachment.

To facilitate the analysis, responses were recorded under the individual sections of the survey. The results were reviewed and discussed with the stakeholders to remove any disagreement. The final score for each section was the most frequently scored answer and which was shared with the participants. Finally a stakeholders’ workshop was organized to achieve uniform consensus. All stakeholders were in agreement with the final TADDS results and endorsed the document.

 

Results

 

With 190 stakeholders interviewed from 47 districts all over the country it can be presumed to be one of the largest such study published to be conducted. Similar studies from Iran¹⁶ and Nepal¹⁷ have also been published where the numbers of respondents have been 14 and 37 respectively.

Not all the sections of the survey were answered by everyone. The public health professionals were more prompt and informative about section one, while patients were specifically asked about health financing – section seven. The physicians and ophthalmologists were more forthcoming for sections two to six and to some extent for section seven also.For the first six sections results along with the final score for each section which is the most frequent score among all transcripts, is given below. The results for section 7 are tabulated separately in Table 3.

Section One: Priorities, policies and programmes- Part I: Existence of priority, policies and programmes for DM

2-DM is listed as a priority; there is a national plan but no programme has been implemented.

While the draft of the national health policy 2010 and at least two provincial health sector strategies make specific references to control of NCDs including diabetes, there is at present no action plan to implement the strategies, nor have resources been allocated for these components of the strategies. A national action plan for NCDs exists but was never implemented and this may need updating before the provinces adopt it for implementation. WHO Country Cooperation Strategy can play an important role in development of multi-sectoral public policies through a national commission or task force for coordination.

Section One Part II: Guidelines for clinical management of DM and DR

2 -  Ministry of health guidelines have been formulated but health professionals are unaware of their availability and thus they are not widely used.

The key professionals involved in management of DM and DR are not aware of any policies and plans. Government should ensure that all relevant policies and plans are regularly shared with key stakeholders including professionals and administrators. There is insufficient engagement of National Task Force for Diabetic Retinopathy with other key stakeholders working for preventing and controlling diabetes and this is limiting the impact and outreach of diabetic retinopathy services. The Task Force should be mandated to interact with key stakeholders for implementation of national policies and guidelines.

Section Two: Service Delivery- Part I: Location of DM services and accessibility to population in need

2 - Some services are available to part of the population

Section Two: Service Delivery -Part II: Networks between the care providers for DM and DR

2 - There is occasional collaboration between separate providers of care for DM and DR. Few centers provide patient-centered care.

There does not generally exist a well laid out screening process nor is the collaboration with medical or endocrinology departments well established to conduct screening for diabetic retinopathy in patients attending the diabetic clinics. There are a certain number of referred patients who never reach the eye physician and are lost on the way. Thus there is a strong need to strengthen the referral channel.

The diabetes care and diagnostic services are available at secondary and tertiary care level, while DR care and diagnostic services are available mostly at tertiary level and above. The top four most common barriers identified by the respondents were poverty, illiteracy, lack of transport and facilities. The health sector strategies of Punjab and KpK aims to improve the quality and access to DM services. If these strategies are given the chance to take practical shape, the access to quality services will increase by diluting number of barriers identified by the respondents in the survey.

Section Three: Health Work Force- Training opportunities and quality for DM and DR care providers

3 - Training is available only in large cities and hospitals.

Diabetic eye disease can be managed through medical or surgical options. There are very few vitreo-retinal (VR) surgeons in the country. There is a need to develop separate cadres for medical and surgical retina training programmes and enhance facilities and support for VR surgical training. Training of optometrists in screening for diabetic retinopathy is generally lacking and so is the collaboration with centers for training of diabetic educators. Therefore special training for optometrists in diabetic retinopathy screening programmes should become a regular feature at the tertiary level. Similarly there is a strong need to expand and strengthen the diabetic educators training programme in the public sector.

Section Four: Health Technology- Accessibility of health technology

2 -  Modern examination technology is available only in major hospitals and private clinics.

Essential health technology is available at secondary and tertiary level of health care. However, there is a significant lack of back up services for repair and maintenance. The biomedical engineers are mostly not available; the procedural and financial bottlenecks further complicate the issue. The training facilities for equipment engineers are very limited in the country. Therefore training programmes for instrument engineers/maintenance technicians should be expanded and strengthened.

Section Five: Health information management systems - Knowledge of disease burden

3 - Prevalence of both DM and DR is known or has been estimated; patients’ records are used to analyze data at national level.

The  District Health Information System (DHIS)  provides  an  important  inroad  into planning  and  monitoring  of  services  for diabetes mellitus. However,  data on  diabetic  retinopathy  and treatment  with  laser  or  surgery  are  not readily available or disaggregated by gender. Further  detailed  reporting  for  diabetic retinopathy  may  not  be  feasible  under  a DHIS,  but  scope  can  be  piloted  for incorporation as part of an add-on Eye Health Information System.

Section Six: Health promotion for DM and DR: Information / education provided to the community/patients on DM and DR

2 - Information to the community is provided occasionally and only through national-level media; not all patients receive education.

Policy makers need to be taken into confidence about the fast emerging epidemic of diabetes and its adverse effects on health and economy of the country. Patients are not aware of the different aspects of diabetes and its management and they are also not aware of the facilities available for this purpose. Therefore relevant education at professional, public and patient level is mandatory and all communication channels must be regularly used. As a part of Corporate Social Responsibility, the private sector must be engaged for this purpose.

Section Seven: Health Financing: See Table 2

Public sector health facilities and hospitals try and provide free anti-diabetic medicines and insulin, but their availability is sporadic. Furthermore, no specific budgetary allocation is made for diabetic services at public sector hospitals. The hospitals are not mandated to charge for services like laser or costly vitreo-retinal surgery. While centers run by NGOs and private sector do charge for most services, health insurance schemes  at  present provide  cover for outpatient  treatment  like  medicine and  in-patient surgery for diabetics  but  with  a substantially  higher premium and with very limited scope. Laser treatment is apparently not covered under the insurance scheme. Laser services should be provided as a social protection measure for the poor. Collaboration  with  other organizations  involved  in  diabetes  work needs to be facilitated to leverage financing  for treatment  of diabetes and  screening  high  risk  patients for diabetic retinopathy.

 

Conclusion

 

In Pakistan, diabetes is listed as a priority; but no programme has been implemented. Health professionals are unaware of MoH guidelines. Transport to the health facilities and the cost of service are the main barriers to access DM and DR services. There is occasional collaboration between separate providers of care for DM and DR. Training opportunities for DM and DR care are available only in large cities and hospitals. Information and education to the community is provided occasionally and only through national-level media. About 35% financing of health care is by government, 55% is through out of pocket expenses and 6% by health insurance.

 

Disclaimer: None.

Conflict of Interest: None.

Funding Disclosure: The study was funded fully by WHO Regional Office in Cairo

 

References

 

1.      Inter Diabetes Federation. IDF Diabetes Atlas, 9th ed. Belgium: International Diabetes Federation, 2019.

2.      Aamir AH, Ul-Haq Z, Mahar SA, Qureshi FM, Ahmad I, Jawa A, et al. Diabetes Prevalence Survey of Pakistan (DPS-PAK): prevalence of type 2 diabetes mellitus and prediabetes using HbA1c: a population-based survey from Pakistan. BMJ Open. 2019; 9:e025300.

3.      Mumtaz SN, Fahim MF, Arslan M, Shaikh SA, Kazi U, Memon MS. Prevalence of diabetic retinopathy in Pakistan: A systematic review. Pak J Med Sci. 2018; 34:493-500.

4.      Din J, Qureshi MB, Khan AJ, Khan MD, Ahmad K. Prevalence of diabetic retinopathy among individuals screened positive for diabetes in five community - based eye camps in northern Karachi, Pakistan. J Ayub Med Coll Abbottabad. 2006; 18: 40-3.

5.      Afghani T, Qureshi N, Chaudhry KS. Screening for diabetic retinopathy: a comparative study between hospital and community based screening and between paying and non-paying patients. J Ayub Med Coll Abbottabad. 2007; 19:16-22.

6.      Kayani H, Rehan N, Ullah N. Frequency of retinopathy among diabetics admitted in a teaching hospital of Lahore. J Ayub Med Coll Abbottabad. 2003; 15:53-6.

7.      Wahab S, Mahmood N, Shaikh Z, Kazmi WH. Frequency of retinopathy in newly diagnosed type 2 diabetes patients. J Pak Med Assoc. 2008; 58: 557-61.

8.      Chaudhry GM.  Retinopathy in Diabetic patients. Pak  J Med Res.2005; 44:82-7.

9.      Dineen  B,  Bourne  RR,  Jadoon MZ,  Shah  SP,  Khan MA,  Foster A, et al: Causes of Blindness and visual impairment in Pakistan: the Pakistan National Blindness and Visual Impairment Survey. Br J Ophthalmol. 2007; 91:1005-10.

10.    Shaikh MA, Gillani S, Yakta DE. Frequency of diabetic retinopathy in patients after ten years of diagnosis of type 2 diabetes mellitus.  J  Ayub  Med  Coll  Abbottabad. 2010; 22:158-60.

11.    Hussain F, Arif M, Ahmad M. The prevalence of diabetic retinopathy in Faisalabad, Pakistan:  a population-based study. Turk J Med Sci. 2011; 41:735-42.

12.    Memon WU, Jadoon Z, QidwaiU,  Naz  S,  Dawar  S,  Hasan  T.  Prevalence  of Diabetic  Retinopathy  in  Patients  of  Age Group  30  Years  and  Above  Attending Multicentre Diabetic  Clinics  in  Karachi.  Pak  J Ophthalmol. 2012; 28:99-104.

13.    Sohail M. Prevalence of Diabetic Retinopathy among Type – 2 Diabetes Patients in Pakistan – Vision Registry: Pak J of Ophthalmol. 2014; 30: 204-12.

14.    Gillani AH, Amirul Islam FM, Hayat K, Atif N, Yang C, Chang J, et al. Knowledge, Attitudes and Practices Regarding Diabetes in the General Population: A Cross-Sectional Study from Pakistan. Int J Environ Res Public Health. 2018; 15 pii: E1906.

15.    World Health Organization: Blindness and vision impairment: Publications: Guidelines and Tools: Tool for assessment of diabetes and diabetic retinopathy. [Online] [Cited 2015 October 15]. Available from: URL: https://www.who.int/blindness/publications/tadds/en/

16.    Katibeh M, Kalantarion M, Mariotti SP, Safi S, Shahraz S, Kallestrup P, et al. A stakeholder perspective on diabetes mellitus and diabetic retinopathy care in Iran; a qualitative study. Arch Iran Med. 2017; 20:288-94.

17.    Mishra SK, Jha N, Shankar PR, Dahal PK, Khatiwada B, Sapkota YD. An Assessment of Diabetic Retinopathy and Diabetes Management System in J Nepal Health Res Counc. 2016; 14:104-10.