Retinitis pigmentosa patients' attitudes toward participation in retinal prosthesis trials

Purpose: We undertook a questionnaire study to explore the retinitis pigmentosa (RP) patients' attitudes and the main reasons for or against participation in retinal prosthesis trials. Methods: Fifty-four patients, who might be potential participants of retinal prosthesis trials, were recruited to complete the questionnaire devised to determine RP patients' willingness, motivations and expectations toward participation in retinal prosthesis trials, identify the concerns of RP patients about participation in retinal prosthesis trials. Results: Eleven (11/54[21%]) of fifty-four patients were willing to participate in retinal prosthesis trials. Nineteen patients (19/54[35%]) declined participation and twenty-four patients (24/54 [44%]) were unsure whether to participate or not. The main reasons cited for willingness to participate in retinal prosthesis trials were high expectations for possible therapeutic benefits (7/11 [63.6%]), altruistic desire to help others (3/11[27.3%]), getting better care and closer follow-up (5/11[45.5%]). Conversely, fear of potential risks and side effects (12/19[632%]), worry of efficacy of retinal prosthetic devices (11/19[57.9%]), poor logistical supports (8/19[42.1%]), having difficulty in understanding information about retinal prosthesis trials (9/19[47.4%]) were main reasons cited for patients who declined to participate in retinal prosthesis trials. Conclusions: The willingness to participate in retinal prosthesis trials is low in RP patients with severe visual impairment. Altruistic motivation should be encouraged and establishing realistic expectations should be an important readiness for retinal prosthesis trials. Sufficient logistical supports and better understanding of the proposed trial may improve the attitudes for participation in retinal prosthesis trials. (C) 2012 Elsevier Inc. All rights reserved.Medicine, Research & ExperimentalPharmacology & PharmacySCI(E)SSCI1ARTICLE4628-6323