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INTRODUCTION: Visual impairment resulting from diseases such as neovascular age-related macular degeneration (nAMD) may cause behavioural, environmental, psychological, and logistical challenges that could act as barriers to effective uptake and sustainability of treatment with anti-vascular endothelial growth factor agents (anti-VEGFs). Understanding emotions and experiences of patients with nAMD may help inform the determinants of adherence, and could contribute to improvements in ophthalmic outcomes and quality of life. METHODS: Seventeen patients with nAMD receiving anti-VEGF injections were enrolled from three clinics: one each in France (n = 5), Germany (n = 6), and the UK (n = 6). Patients' health information and treatment characteristics were collected. Individual phone interviews were conducted by experienced health care interviewers. Transcripts were analysed thematically. RESULTS: Patients (53% female) had a mean age of 77 years. Bilateral anti-VEGF injections were received by 24% (n = 4); and most (76%, n = 13) were adherent to their treatment. Patient emotions at diagnosis ranged from happiness at learning about the treatment for nAMD to being terrified of receiving an injection in the eye. Most patients mentioned feeling anxious and fearful before their first injection despite receiving reassurance. After the first injection, these feelings and apprehension abated for many, but not all. With the goal of maintaining the best possible vision, few (24%, n = 4) patients reported more than one missed appointment, and most had never considered stopping treatment. No patient reported additional assistance beyond family support; however, many had difficulties with recreational and domestic activities and had developed coping strategies. CONCLUSION: This study provides insights on patients' emotions related to their experience of nAMD and its management, highlighting the varying experiences between individuals. It shows the importance of the patient's voice when considering patient care and management, and how the nature and timing of interventions can improve the experience of living with and managing nAMD.
Neovascular age-related macular degeneration (nAMD), also known as wet age-related macular degeneration (wAMD), is an eye condition that is a common cause of vision loss and worsens over time without treatment. This condition mainly occurs in people aged 70 years or older. The standard of care is an injection of anti-vascular endothelial growth factor (anti-VEGF) into the eye to minimise vision loss that continues over time without treatment. To maximise the benefits of treatment, injections are required at regular intervals over time. The purpose of this study was to understand the emotions and experiences of patients with nAMD about their disease, its consequences, and its management. Seventeen patients from three countries (France, Germany, and the UK) were interviewed over the telephone. Patients reported diverse feelings and responses to their disease and treatment. Many felt nervous and anxious at diagnosis and before their first injection (despite reassurances from their doctors); however, after the first injection, these feelings and apprehension abated for many, but not all. Most patients (76%) missed fewer than two appointments in the past year, and almost all (82%) did not consider stopping treatment. Patients learned to deal with their nAMD, but many had difficulties with daily activities. Patients developed ways to manage tasks such as cooking, cleaning, knitting, and driving. The insights from this study help understand how care for patients with nAMD can be improved by addressing patients' concerns and feelings about their disease and treatment.
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INTRODUCTION: Benepali® was the first etanercept (Enbrel®) biosimilar to be approved in the European Union. Both Benepali and Enbrel are available as autoinjector devices. In a recent survey, nurses from France, Germany, Italy, Spain, and the United Kingdom (UK) reported that their patients with rheumatoid arthritis (RA) would prefer the Benepali autoinjector compared to the Enbrel MYCLIC autoinjector. To determine whether patients' perceptions were similar to those of the nurses, this survey evaluated patients' perceptions and preferences of the Benepali autoinjector versus the Enbrel MYCLIC autoinjector in the same five European countries. METHODS: Patients with RA using the Enbrel MYCLIC autoinjector participated in a 25-min, face-to-face questionnaire-interview. Patients were also shown an instructional video and device-handling leaflet, received a live demonstration on the Benepali autoinjector, and had access to both Benepali and Enbrel MYCLIC training autoinjectors. Patients rated the importance of ten autoinjector attributes on a seven-point scale (1 = not important at all; 7 = extremely important) and provided their autoinjector preferences based on specific attributes. Patients also gave their opinion on which autoinjector they would prefer to use for self-injection. RESULTS: Overall, 220 patients participated in the survey (France, n = 30; Germany, n = 65; Italy, n = 67; Spain, n = 12; UK, n = 46). 'Easy to operate the self-injection' was ranked as the most important attribute (mean score of 6.8), followed by 'easy to grip' (6.5), and 'intuitive/self-explaining usage' (6.3). Patients preferred the Benepali autoinjector, with the attribute of 'easier to operate' being a strong differentiator compared to the Enbrel MYCLIC autoinjector. Most patients (74%) reported that they would prefer to use the Benepali autoinjector over the Enbrel MYCLIC autoinjector. 'Easy to operate the self-injection' and 'button-free autoinjector' were key drivers when selecting an autoinjector. CONCLUSIONS: Patients in Europe reported a preference for the Benepali autoinjector compared to the Enbrel MYCLIC autoinjector. This finding is consistent with results from a recently reported nurse survey. FUNDING: Biogen.
RESUMO
INTRODUCTION: Enbrel® (etanercept: manufactured by Immunex Corporation, Newbury Park, Thousand Oaks, CA 91320, USA) was the first biological disease-modifying anti-rheumatic drug approved for the treatment of rheumatoid arthritis (RA) in Europe. More recently, an etanercept biosimilar (Benepali®: manufactured by Biogen Inc, Cambridge, MA 02124, USA) was approved in the European Union. The perceptions and preferences of the Benepali autoinjector versus Enbrel MYCLIC autoinjector were evaluated by nurses from Europe. METHODS: The survey involved a 25-min face-to-face questionnaire-interview with nurses from France, Germany, Italy, Spain, and the UK, experienced in training patients on using the Enbrel MYCLIC autoinjector. Nurses viewed an instructional video and device-handling leaflet, received a live demonstration on the Benepali autoinjector and had access to both Benepali and Enbrel MYCLIC training autoinjectors. Nurses rated the importance of ten autoinjector attributes on a scale of 1-7 (1 = not important at all; 7 = extremely important) and provided their autoinjector preferences based on specific attributes. Nurses also gave their opinion on which autoinjector their patients with RA would prefer. RESULTS: A total of 149 nurses participated in this survey (France, n = 30; Germany, n = 40; Italy, n = 30; Spain, n = 19; UK, n = 30). 'Easy to operate the self-injection' was ranked as the most important attribute (mean score of 6.8), followed by 'easy to grip' (6.6) and 'intuitive/self-explaining usage' (6.6). Nurses preferred the Benepali autoinjector, with attributes of 'easier to operate' and 'more intuitive to use' being strong differentiators compared with the Enbrel MYCLIC autoinjector. Most nurses (86%) reported that their patients would prefer the Benepali autoinjector over the Enbrel MYCLIC autoinjector. 'Easy to operate the self-injection' and 'button-free autoinjector' were key drivers when selecting an autoinjector. CONCLUSION: Based on these survey results, nurses in Europe reported a preference for the Benepali autoinjector compared with the Enbrel MYCLIC autoinjector for the majority of attributes assessed. In particular, attributes of 'easy to operate' and 'more intuitive/self-explaining to use' were highly rated for the Benepali autoinjector, which may allow easy handling of the autoinjector. FUNDING: Biogen International GmBH.
