Treatment of age-related neovascular macular degeneration: the patient’s perspective

Abstract

ObjectivesThe aim of this study was to assess patients’ views and expectations with regard to neovascular age-related macular degeneration (nAMD) and intravitreal anti-VEGF therapy (IVT).MethodsWe conducted a multicenter, non-interventional, prospective cohort study including nAMD patients treated with IVT in Germany. Patients with at least one IVT before study enrollment and aged ≥50 years were included. Three telephone interviews were conducted during a 12-month observational period. Here, patient’s beliefs/expectations with regard to the nAMD disease and the IVT treatment were discussed. Only patients who completed all three phone interviews were included in the analyses. We used a two-step cluster analysis to identify patient clusters regarding specific patient attitudes towards nAMD and its treatment.ResultsThree hundred and thirty-two patients completed all interviews (mean age of 76.4 ± 7.2 years, 59.0% women). Out of these, 57.8% acknowledged that they needed general assistance in daily life, while 77.4% stated being able to attend general medical appointments on their own. However, 64.7% needed a driver or an accompanying person to attend their IVT appointments.In addition, 3.9% of the patients were afraid of IVT side effects. Also, 87.3% and 43.1% of the patients could name their disease or the anti-VEGF drug administered, respectively. More than three-quarters of the patients (83.1%) were aware of possible consequences of nAMD by stating vision loss or blindness, but only 16.6% knew that nAMD is a chronic disease.Generally, patients were optimistic: 70.2%, 5.1% and 13.0% of them expected stable visual acuity (VA), a significant improvement or expected worsening of VA in the next year, respectively. Almost two thirds of patients who provided their therapy expectations (47.0%) anticipated fewer injections/discontinuation of IVT.We identified five patient clusters differing significantly from each other with regard to four variables: being afraid of IVT, nAMD disease awareness, optimism with regard to effectiveness of IVT, and nAMD disease and treatment knowledge.ConclusionsOnly a minority of patients is aware of the chronic nature of nAMD. To motivate patients to accept a life-long IVT treatment, physicians and caregivers must know that there exist different patient types with significant differences in communication needs.

Systematic review: non-adherence and non-persistence in intravitreal treatment

“…or obj.) Oishi et al [ 54 ], Polat et al [ 15 ], Weiss et al [ 16 ], Ziemssen et al [ 56 ] Boulanger-Scemama et al [ 13 ], Gillies et al [ 49 ], McGrath et al [ 52 ] 4 , Nunes et al [ 53 ], Polat et al [ 15 ], Weiss et al [ 16 ], Westborg et al [ 55 ] Boyle et al [ 2 ], Sii et al [ 58 ], Kostadinov et al [ 59 ], Mueller et al [ 20 ] Health system Center-dependent Ehlken et al [ 17 ], Heimes et al [ 50 ], Westborg et al [ 55 ], Ehlken et al [ 48 ] Krüger Falk et al [ 51 ], Nunes et al [ 53 ], Polat et al [ 15 ], Weiss et al [ 16 ] Patient Anxiety, fear Droege et al [ 14 ] 5 Polat et al [ 15 ] Boyle et al [ 2 ], Droege et al [ 60 ], Müller et al [ 61 ], Senra et al [ 62 ], Sii et al [ 58 ], Kostadinov et al [ 59 ] Motivation, knowledge, expectations Droege et al [ 14 ], Krüger Falk et al [ 51 ], Weiss et al [ 16 ], Westborg et al [ 55 ] Boyle et al [ 2 ], Müller et al [ 61 ], Sii et al [ 58 ] <...>…”

“…Fear or anxiety (29.6%) and lack of belief in treatment efficacy (21.6%) were stated most predominantly by non-adherent patients in a study from Turkey [ 15 ]. Fear and anxiety were also repeatedly reported as potential barriers in treated patients [ 2 , 14 , 58 , 59 , 61 , 62 ].…”

Safety and clinical effectiveness of intravitreal administration of bevacizumab (Lumiere^&reg;) in patients with neovascular age‑related macular degeneration

“…Certain limitations of our study should be noted: i) Due to the small sample size, rare/uncommon AE(s) were unlikely to be detected in the present cohort ( 53 ); ii) follow-up of each patient lasted 6 months and considering that life-long treatment is required for nAMD ( 54 ), a long-term outcome assessment is not available; iii) no formal or specific assessment on the psychological impact and quality of life of anti-VEGF therapy was performed ( 55 ); iv) the present study followed a pro re nata treatment strategy, according to which patients were given 3 injections on a monthly basis, followed by a decision of whether to continue treatment, based on the evolution of VA and retinal thickening, safety outcomes and any other clinical finding judged by the investigator as relevant for the treatment decision. However, there are other published therapeutic strategies (e.g., treat-and-extend) that may also be applied in clinical practice, which were not pursued in the present study ( 56 , 57 ).…”

ANDROMEDA – Eine Untersuchung von Einflussfaktoren auf die Adhärenz von Patienten mit neovaskulärer altersabhängiger Makuladegeneration mithilfe des neu konzipierten Patientenfragebogens LAF-IVT

“…In bisherigen nAMD-Studien wurden primär die mit der Injektionstherapie verbundenen Ängste und Schmerzen von Patienten adressiert [22]. Wenige Studien befassten sich auch mit anderen Aspekten der Therapieerfahrung, welche jedoch ausschließlich mit qualitativen Fragen statt eines standardisierten und validierten Erhebungsinstruments abgefragt wurden [23,24]. Erst durch die Entwicklung des "Macular Disease Treatment Satisfaction Questionnaire (MacTSQ)" steht ein spezifisches PRO-Instrument, welches die Therapiezufriedenheit von nAMD-Patienten misst, zur Verfügung.…”