Survey highlights heavy burden, high level of emotional distress related to intravitreal injections

A high number of respondents reported anxiety in anticipation of treatment started 2 or more days before the appointment.

Issue: October 2015

A survey carried out across three countries in Europe among patients with diabetic macular edema or retinal vein occlusion found that the impact of intravitreal injections in terms of anxiety is high and adds up to the stress and burden of multiple appointments, long waiting times, expenses and need for carers.

“The most desired improvement suggested by patients was to have fewer injections to achieve the same visual result,” Sobha Sivaprasad, MD, first author of the study, said.

One hundred thirty-one patients from Germany, the United Kingdom and Italy completed a questionnaire; 86 patients (66%) had DME, and 45 (34%) had RVO.

Practical impact

One set of questions investigated the practical impact of intravitreal injection treatment on patients and carers.

Sobha Sivaprasad

“We looked at the number of appointments and the time spent on average for each appointment by patients and carers. We found that the total appointment burden was 13.5 hours for RVO patients and 20 hours for DME patients every 6 months. On average, each intravitreal injection took 4.5 hours including travel time,” Sivaprasad said.

More than half of the patients who are still working had to take at least 1 day off work. Seventy-one percent of the patients needed assistance from carers at the time of injection, and for carers, this involved a time investment of 6.3 hours on average per injection.

“Since 50% of carers work, in 60% of the cases they had to take time off to help the patients,” Sivaprasad said.

Patients with diabetes have a more complex schedule of multiple visits that involve not only the retina specialist and general ophthalmologist, but also the general practitioner and diabetologist, plus the cardiologist and neurologist in some cases. “This amounts on average to 19 appointments per patient every 6 months, a considerable burden which makes attendance difficult,” Sivaprasad said.

Emotional distress

Three-quarters of patients reported anxiety in connection with intravitreal injections, and 54% reported feeling anxious for at least 2 days before the treatment. Patients defined anxiety as not being able to relax and take their mind off the thought of the injection. One in four patients (26%) said their sleep was affected, and 10% developed physical symptoms, such as headache and nausea.

“We asked patients what sort of improvement they desired, and 42% said they want fewer injections and 22% said they want fewer appointments to get the same results. Fourteen percent of responders said they would like to wait less time before the procedure, and 7% would like to have the treatment carried out closer to their home or to have free transportation. Some expressed the need to have their hand held by a nurse while having the injection and 3% to have more time with the doctor,” Sivaprasad said.

The high treatment burden associated with intravitreal injections in terms of time, travel and cost for both patients and carers has often been discussed.

“What we may not have been fully aware of was the amount and severity of anxiety patients may experience,” Sivaprasad said. “When they come to the clinic, we see they are worried. They often ask if they are going to need another injection, and when we say no, they are relieved. However, we did not expect so many of them to be anxious 2 days or even a week before surgery, to be affected in their sleep and to suffer physical symptoms.”

The distress caused by inconveniences and costs combined with the burden of anxiety is bound to heavily affect patients’ quality of life.

“Such a significant impact should be taken into account more in the appraisal of drugs,” Sivaprasad said.

The desire expressed by patients in the study, to have fewer injections to achieve the same visual results, highlights the need to continue research in the direction of longer-acting drugs and alternative modalities of administration.

“Injections may not be the end of the story,” Sivaprasad said.

“Our study involved a relatively small cohort of patients, but we hope that it might be important for the community and raise interest to set up a larger study on the same topic,” she said. – by Michela Cimberle

For more information:
Sobha Sivaprasad, MD, is a consultant in Moorfields Eye Hospital and University College London; email: senswathi@aol.com.

Disclosure: Sivaprasad reports she is on the advisory board of Allergan, Bayer, Novartis and Roche and that the study was funded by Allergan.