Are we failing patients with eye health complications?

Leprosy is known for causing a variety of painful, challenging, and preventable complications for those it affects. Many of the most well-known complications relate to hands and feet.

This is because leprosy is often considered a dermatological and neurological issue; healthcare workers are primed to look for skin patches and peripheral nerves and so they consider what impairments might be present on the areas of the body with nerve supply and skin changes present. Equally, many of our fundraising and communications materials rely on photos of tangible interventions, like the cast on an arm after reconstructive surgery or protective footwear. Our image of leprosy is not one that often includes eyes.

The consequence of this is that eye health is too often forgotten.

Dr Helen Roberts is an Ophthalmologist with The Leprosy Mission Trust India. Her opinion is that, across the leprosy sector, we are failing too many patients with inadequate eye care.

“My experience is that patients don’t often complain about eye problems, whether that is pain or loss of vision. Part of the reason for this is that we are not talking to them about eye health enough. While we might not be hearing much about this from our patients, it does not mean that it is not an issue. What I have seen is that eye complications are generally detected when they have become obvious to both patient and healthcare provider, by which time the condition has become quite advanced. We need to do better.”

What complications can leprosy cause in the eyes?

Complications in leprosy are caused when the leprosy bacteria invades around the nerves and causes impairment in nerve function. For hand and foot complications, the affected nerves are in the elbow and knee. For eye complications, the affected nerves are in the face.

When the nerves in the face are affected, loss of sensation and paralysis are two of the consequences. Patients may no longer be able to close their eyes (known as lagophthalmos) and patients may also lose sensation in the cornea and the rest of their eyes.

This is a perilous combination, meaning that dust and dirt enter eyes that do not close and patients cannot feel that this is causing damage, so they do not feel the urge to blink or remove the dirt from their eye. The cornea then becomes scratched, which affects vision; like looking through glasses that have been scratched by a sharp stone.

If a patient cannot close their eyelids, this can be corrected with reconstructive, tendon-transfer surgery. However a damaged cornea cannot be fixed and sensation cannot be returned. If a patient has retained sensation in their eyes, they may be painful and red.

As with any complications in leprosy, a reaction can cause further problems. If a patient has a build-up of leprosy bacteria in the eyes, there can be an inflammatory reaction which leads to inflammation of the eye. This complication can lead to blindness because the inflammation affects the Iris and ciliary body and can cause glaucoma and the development of complicating cataracts.

This reaction can be treated with cortical steroids, but this treatment can also lead to glaucoma and vision-loss if it is not closely monitored.

Ocular involvement is estimated to occur in anywhere between 50-85% of patients and severe complications occur in around 10% of patients.

Many of the failings are happening in wider healthcare, but the leprosy sector can improve too

As Dr Helen explains, “In The Leprosy Mission in India we are providing good eye care. Patients undergo regular eye check-ups with an ophthalmologist, starting from the time of diagnosis. Our experts also closely monitor any patients under steroid treatment.

That is not to say that we offer perfect care. Our ophthalmologists provide a lot of care to the general population, making us busy people. So if a leprosy patient is not presenting with any eye complications, we may move them out of the door so we can move onto the next patient, rather than taking time to ask about past symptoms or explain self-care for the eyes.

“We are also not doing enough to empower the wider healthcare sector. Dermatologists are focused on skin and so red eyes are often missed when they are reviewing leprosy patients. Physios and technicians are often well-trained in care for hands and feet, but they too often lack the knowledge and skills required for appropriate eye care. The don’t know how to look for impairments such as loss of vision or reduced blink rate.

“One of the things that grieves me most is when leprosy patients are denied cataract surgery in the wider healthcare system. Performing this surgery on a leprosy patient is more complex than it is on someone who has not had leprosy and the post-op outcomes are not as good. If a surgeon sees a person is affected by leprosy, they sometimes refuse to operate on them because they want to keep their record of good post-op outcomes. Sometimes they also fear they will be infected with leprosy themselves.”

This is how we can do better

Dr Helen has four steps that she believes the leprosy sector should be taking to ensure we are providing better eye care. They are based on her experience in India, but would be valuable in endemic countries across the world.

We need to train and equip the wider healthcare system: “We do a lot of training of workers in the wider healthcare system, but we are not labouring the point about eye health enough. Even in India, where we have a lot of cases and our health system is better equipped to handle leprosy than other countries, we are still some way from equipping healthcare professionals with good eye care skills. I want the next generation of healthcare workers to not think of leprosy only as a skin disease. I want our training to influence them so they think of eyes just as quickly as they think of hands and feet. We can do that by adapting the training we provide.”
Have better systems for follow-up care: “Most eye complications happen after MDT treatment has finished. The dead bacteria stays in the eye for longer than it does elsewhere in the body, which means patients are exposed to reactions in the eyes for longer. Our systems for follow-up care need to take this into account. All follow-up care should be sure to involve eye check-ups, but perhaps these eye check-ups should continue for even longer than our other follow up care. This is about changing our systems of working, both in the leprosy sector and in wider healthcare.”
Educate patients better: “Whilst we can try to follow up with patients about their eye care, this will be more effective if patients know about their own health. There is a lot of room for improvement when it comes to teaching patients about eye care. The interventions are not complicated, they just need to be taught. This could include remembering to wear glasses, a large hat, or a shawl to keep dust away from eyes. When sleeping, patients can tie a clean cloth loosely around their eyes to protect them. Small steps like this prevent complications and also remind patients to be conscious of their eyes and to come for treatment if they notice problems.”
Document what is happening: “There is a lack of knowledge about what is happening to patients’ eyes. We need more studies about how eye health changes over time in leprosy, what can cause inflammatory episodes, and what treatments are best. We need to better document the incidence and break that data down across different levels. The more we know, the better we can be at preventing and treating impairment.”

One of the things that grieves me most is when leprosy patients are denied cataract surgery in the wider healthcare system.