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Barriers To Treatment/Patient Non-Attendance

Barriers to Implementing DED Screening Programmes

There is strong evidence from high-resource countries, such as the United Kingdom, United States, and Iceland that systematic screening for, and treatment of sight-threatening Diabetes-related Retinopathy is both effective and cost-effective, compared with no screening, in terms of cost per quality adjusted life year (QALY) gained and sight years saved.46, 63-65 However, the implementation of screening programmes that reach all people living with diabetes remains a challenge, particularly in low- and middle-income countries. A summary of the main barriers to implementation of widespread screening is provided below 66-68:

 

  • Shortage of trained eye care professionals to perform screening 
  • Lack of access/funding to equipment for screening, or inability to refer people living with diabetes for Diabetes-related Retinopathy treatment
  • Unequal distribution of eye care resources between rural and urban areas 
  • Lack of epidemiological data relating to the number of people in the population living with diabetes and Diabetes-related Retinopathy within the population (also referred to as the ‘prevalence’). 
    • The creation of registries for people living with diabetes is important in order to identify the target population for Diabetes-related Retinopathy screening and to estimate the amount of healthcare and financial resources required to implement the screening programme
  • Lack of country-specific data relating to the economic costs of vision loss due to Diabetes-related Retinopathy, and the potential cost-savings of early detection through population-based screening
  • Organisational issues, including absence of clear management guidelines or clinical care pathways for people living with diabetes and Diabetes-related Retinopathy.
    • A lack of clearly defined care pathways can make it difficult to define national screening policies, or design and implement screening programmes 
    • Organisational issues as a barrier are not just limited to low- and medium-income countries; systematic screening programmes can also be difficult to implement in resource-rich countries that have mixed public and private insurance-based health care, due to the lack of a public health system ensuring universal funding and coverage for screening.

Barriers to Treatment 

The Patient Perspective

Globally the greatest barriers to treatment and care from the patient perspective are related to capacity and cost such as long wait times to the appointment, long wait times on the day in the clinic, the cost of the examination and long distance required to travel to get to the clinic for the exam.

The Care Providers Perspective

Health care providers report the barriers to optimal eye health care are largely due to patient responsibilities. In particular, a patient’s general lack of knowledge or awareness, the patients feeling that eye exams were not important, or that eye complications were unlikely, and patients having a general fear of treatment or the test results.

Separate to the patient’s responsibilities, health care providers perceived additional challenges to be due to the high cost of care, long wait times to schedule an appointment, limited access to eye specialists, and the complicated or delayed referral process.

Patient Non-Attendance at DED Screening

In those countries that have implemented systematic retinal screening for all people with diabetes, non-attendance at screening appointments continues to be a major challenge. For example, in the United Kingdom, it has been reported that as many as 1 in 5 people with diabetes fail to attend screening appointments.69

A recent systematic review 70 of published studies evaluating the reasons for non-attendance at diabetes-related screening appointments in the UK and several other countries (Saudi Arabia, USA, Ireland, Iceland, The Netherlands) identified a number of patient- and health system-specific reasons why patients may not attend the diabetes-related eye screening appointment (summarised below):

 

Patient Level Factors:

  • Lack of awareness about Diabetes-related Retinopathy and the fact it can lead to blindness
  • Anxiety about screening
  • Fear, particularly of laser treatment
  • Guilt, about glycemic stability causing retinopathy
  • Not engaging with any diabetes care
  • Being misinformed about screening
  • Having competing priorities
  • Socio-economic deprivation

 

Health System Factors:

    • Miscommunication about where the patient lives / their clinical situation
    • Not sending the screening invitations out on time
    • Patients’ clinical notes not being shared

 

Some of these factors are modifiable, and the following strategies were suggested by the authors to improve attendance at Diabetes-related Retinopathy screening:

      • Improving communication between primary care physicians and screening services
      • Improving ways in which patients are invited and contacted for the screening
      • Ensuring screening is recommended by the physician
      • Making programmes sensitive to differences of ethnic minorities, and attempting to bridge the language barrier gap
      • Having screening sites in areas that are easily accessible with good transport links
      • Integrating retinal screening with other diabetes-related care

 

With all of this in mind, the ERN-EYE created a video to explain how we can support, comfort and welcome patients in a hospital environment. This video clip describes how to interact and communicate with people living with visual impairments so as to relax them before their appointment and encourage them to attend future appointments to take care of their eyes. Helpful tips include assisting people to their appointment, adjusting lighting as necessary and avoid moving their belongings, so as not to confuse and upset them. The full video is available to watch here.

 

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