Psychosocial assessment of potential retinal prosthesis trial participants.

BACKGROUND: As the field of retinal prostheses advances, volunteers are required for device trials, and optimal participant recruitment is vital for intervention success. The aims of this study were: (i) to select tests that assess the psychosocial aspects of visual impairment and develop a psychosocial assessment protocol for persons who may be eligible for participation in retinal prostheses trials; (ii) to investigate correlations between these tests; and (iii) to determine associations between psychosocial factors and a person's interest in participating in a retinal prosthesis (bionic eye) trial. METHODS: Cross-sectional study of 72 adults with advanced retinal degeneration. Questionnaire assessments included personality, cognitive ability, social-support, self-efficacy, coping, optimism, depression, and quality of life (Impact of Vision Impairment Profile ([IVI], and Vision and Quality of Life Index [VisQoL]). Level of interest in a retinal prosthesis was also evaluated. RESULTS: All questionnaires were completed without floor or ceiling effects and with minimal respondent burden. Depression correlated with decreased quality of life (rho = -0.37 and 0.40, p < 0.001 for IVI and VisQoL, respectively). Together, depression, gender and vision-specific coping explained 35.2 per cent of variance in IVI quality of life (p < 0.001). Forty-nine per cent of participants were interested in a retinal prosthesis now and 77 per cent in the future. Although the personality trait of 'openness' was somewhat predictive of interest in retinal prostheses (odds ratio 0.78, 95% CI 0.62-0.97), neither severity of vision impairment nor any of the psychosocial measures were strong predictors. CONCLUSIONS: Several existing psychosocial questionnaires can be used for patients with advanced retinal degeneration and may be useful in exploring suitability for a retinal prosthesis or evaluating outcomes. However, the questionnaires used in this study were not good predictors of whether or not a person might be interested in a retinal prosthesis.

Bionic Vision, Social Work, and Community Development: A Research Participant's Reflections.

This article discusses bionic vision through the author's experiences as Australia's first research participant in an early prototype bionic eye trial. During her two-year participation, she drew on various theoretical perspectives, including critical and community development approaches that not only influence her professional social work perspective, but extend to her personal worldview. In a rapidly emerging biotechnological age, this article contributes a holistic perspective, bringing into focus theory and practice; issues of human experience, human rights, and oppressive relationships; tensions between agency and structure (particularly relating to disability from a social model of disability and the medical model); and practical applications of artificial vision. Beyond its practical applications, illuminated is the relevance of community development values and principles such as a sense of connectedness, participation, and empowerment, which are understood in terms of an antioppressive perspective. The article concludes by recognizing the potential benefit of bionic vision for vision-impaired and blind people in their everyday lives.

Acquisition of Visual Perception in Blind Adults Using the BrainPort Artificial Vision Device.

OBJECTIVE: We sought to determine whether intensive low vision rehabilitation would confer any functional improvement in a sample of blind adults using the BrainPort artificial vision device. METHOD: Eighteen adults ages 28-69 yr (n=10 men and n=8 women) who had light perception only or worse vision bilaterally spent up to 6 hr per day for 1 wk undergoing structured rehabilitation interventions. The functional outcomes of object identification and word recognition were tested at baseline and after rehabilitation training. RESULTS: At baseline, participants were unable to complete the two functional assessments. After participation in the 1-wk training protocol, participants were able to use the BrainPort device to complete the two tasks with moderate success. CONCLUSION: Without training, participants were not able to perform above chance level using the BrainPort device. As artificial vision technologies become available, occupational therapy practitioners can play a key role in clients' success or failure in using these devices.

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[63.2%]), 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.

Responses of potential users to the intracortical visual prosthesis: final themes from the analysis of focus group data.

Although visual implant prosthesis projects are advancing, little exists in the literature on the factors that would lead an individual to volunteer for such an experimental procedure. Many ethical issues are raised in recruiting and involving individuals in experimental implant procedures, most involving autonomy and informed consent. This report provides perspectives of 30 totally or legally blind older individuals on their expectations about a potential visual implant, their motivations for volunteering, and the processes they would use for decision making. Data were collected in eight focus groups, using semistructured focus group processes. Among the primary reasons a person with seriously impaired vision would volunteer for a new implant procedure are helping others, exploring the unknown, and restoring perception. The decision to participate in an experimental brain implant procedure is complex. Potential recipients have many questions about the device and the procedure, the perceived risks, and the commitment of a research team to the participants once a device has been implanted. Some would involve their family in a decision; others are more comfortable making the decision independent, after consulting others. The themes identified provide a guide for recruiting and ensuring an ethical experience for participants in experimental protocols.