Researchers at the Institute of Basic Medical Sciences, University of Oslo, the Norwegian Association of the Blind and Partially Sighted, Oslo, and Roche Norway (F Hoffmann-La Roche AG), have reported that the results of a survey of intravitreal injections for nAMD (neo-vascular age-related macular degeneration) represents a substantial burden for Norwegian patients and their caregivers. Analysis of the results of the survey suggested that “future research on how the treatment burden impacts nAMD patients may lead to more patient-centered care and help guide treatment decisions”. Reducing the treatment burden could benefit patients for “new treatments with longer intervals between injections”, which may then “improve capacity in ophthalmology clinics”. As a chronic disease, treatment of nAMD may require frequent anti-VEGF injections, potentially every fourth week for many years, consequently there a significant challenge for patients, caregivers and the healthcare system in Norway.
In the study, Norwegian nAMD patients voluntarily completed the survey, with questions asked on diagnosis, demographics, average time spent each treatment day, need for caregiver support, treatment interval and the emotional impact of the treatment. All survey data was included in the analysis, as submitted by the respondents, and all patient data was anonymous and with no participants were identifiable. There were no open-ended questions in the survey and the questions had pre-specified alternatives, and some of them allowed alternatives to be selected According to the results, 130 patients responded and the majority of patients reported to receive nine (9) or more injections per year (48.8%), and many patients needed caregiver support for every treatment appointment (37.7%). Patients reported to be anxious one day (25.4%), two days (8.5%), one week (10.8%) or more than one week (3.1%) prior to treatment. The week before the treatment, 33.1% of patients reported to be stressed and 15.4% struggled to sleep. The majority of patients reported the treatment as uncomfortable (54.6%) or as somewhat painful (26.2%). The results on yearly number of injections, time used each treatment day and need for caregiver support suggested a variation between Norwegian hospital regions.
Following the results, the researchers stated that, “based on the patient-reported data, results from this survey reveal how the treatment with anti-VEGF injections represents a substantial burden for patients with nAMD in Norway. The results support findings from other countries, demonstrating the high emotional and practical burden that retinal diseases place on patients”. Similar to other studies from Germany, UK and Italy, patients may need to take at least one day off from work and that they spent on average four and a half hours (4.5) on the treatment day. In addition, the research found that “our data show that the highest proportion of patients who report to use more than nine hours per treatment day resides in health regions with the longest median distance to the hospital as measured by Statistics Norway”. In addition, and similar to other studies across Europe, there was a significant emotional impact on the anti-VEGF treatment. Patients reported been nervous or struggled to sleep prior to treatment and the visual impairment caused by nAMD can be associated with poor quality of life and a higher risk of depression.