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Patients with retinal diseases found intravitreal anti-VEGF therapy and disease management challenging, but most expressed high levels of satisfaction with their treatment.
An analysis of ALBATROS study data provided insight into the significant social, behavioral, and psychological impact related to anti-vascular endothelial growth factor (VEGF) treatment for retinal diseases.1
Results from the analysis showed that, despite the logistic and psychological challenges associated with anti-VEGF therapy, many patients with retinal diseases, including neovascular age-related macular degeneration (nAMD), diabetic macular edema (DME), and retinal vein occlusion (RVO), often exhibit high levels of satisfaction with their treatment.
“Understanding patients’ needs and fears are prerequisites to explaining motivation and commitment to treatment,'' wrote the investigative team, led by Christian Wolfram, MD, department of ophthalmology, University Medical Center Hamburg-Eppendorf. “The high prevalence of fear for vision loss may be a driving factor behind treatment adherence.”
Widespread use of intravitreal anti-VEGF injections has been linked to a reduction in blindness and low vision, but patient perspectives may differ from a public health standpoint.2 Intravitreal treatment requires continuous motivation, with nonadherence being a significant challenge for the long-term maintenance of vision. Injection frequency and adherence are known to be much lower in the real-world setting compared with clinical trials.
Thus, placing more focus on the patient perspective has received increased awareness in recent years to better understand their concerns, relevant barriers, and behavioral aspects. A significant number of patients with retinal diseases are elderly and often exhibit limitations before treatment, with ocular discomfort adding burdens for both patients and their caregivers.
To better capture the personal situation and treatment commitments of patients, Wolfram and colleagues developed an exploratory tool aimed at comprehensively identifying social, physical, and psychological conditions and any internal or external barriers to therapy.1 The structured Basic Care and Patient Satisfaction Questionnaire (BPZ-9) consisted of nine questions in three different domains about patients’ social, physical, and psychological conditions. Distress and satisfaction with treatment were measured at baseline and the final study visit (after 12 months).
A total of 1478 patients with a baseline and 12-month visit were included in the analysis set after ALBATROS data collection. During the observation period, patients received an average of 6.1 anti-VEGF injections. Approximately two-thirds of the population (65.2%) were treated for nAMD, while 32.8% received bilateral treatment (DME; 9.9%).
At baseline, 24.7% of patients reported walking impairments and 18.9% reported dependency on an accompanying person for treatment. Patients with nAMD most often suffered from walking difficulties and required more assistance in the analysis. After 12 months of treatment, walking difficulties slightly increased to 26.5% and the need for assistance during anti-VEGF treatment rose to 19.7%.
Meanwhile, before the first anti-VEGF treatment, most patients (74.1%) reported anxiety about visual impairment and blindness. After 12 months of treatment, the concern was still present in 67.2% of patients – fear of vision loss was less prominent in patients with branch RVO and more prominent in those with nAMD. Meanwhile, 15.5% of patients expressed less anxiety about vision loss, while a small group (8.6%) noted more anxiety than before the anti-VEGF therapy.
At baseline, psychological distress data showed that 71.9% of patients perceived their distress as moderate-to-very distressing, compared with 25.8% experiencing little to no distress. At the final visit, fewer patients indicated disease-related distress, but it was still identified in 65.6% of patients.
A majority (52.5%) experienced treatment distress as little or not at all distressing, compared to 44.5% who valued treatment as moderately to very distressing. Overall, patients indicated the distress of having the disease was frequently greater than the distress related to treatment. Regarding treatment satisfaction, most patients reported high satisfaction (73%), regardless of the underlying treatment indication, and most also felt well-informed (81%).
Wolfram and colleagues noted the link between motivation and behavior requires further investigation, to potentially provide new insights for achieving treatment adherence and satisfaction.
"We hope that our exploratory study questions can help widen the knowledge about patients’ social and psychological situations and may serve as a useful complement to other instruments of patient-related outcome measures,” investigators wrote.1