Date Presented 3/31/2017
Individuals with end-stage age-related macular degeneration were surveyed regarding the impact of the Implantable Miniature Telescope procedure on quality of life and treatment satisfaction. A reliance on previous coping strategies was shown to have a positive influence on both variables.
Primary Author and Speaker: Tara Boehne
Additional Authors and Speakers: Vanessa Jewell
PURPOSE: Individuals who suffer from end-stage age-related macular degeneration (AMD) experience severe to profound visual impairment characterized by significant occupational performance limitations. Research has shown that profound visual impairment results in negative quality of life (QoL) for these individuals. Treatment options for individuals with AMD are very limited; however, the Implantable Miniature Telescope (IMT; VisionCare, Saratoga, CA), an innovative visual prosthetic device designed to improve visual acuity of central vision in one eye, is seen as a potential miracle cure for those with AMD. We examined the impact of the IMT procedure on QoL and level of treatment satisfaction of individuals with end-stage age-related macular degeneration.
DESIGN: The purpose of the mixed-methods design was complementarity, which allowed for elaboration and a richer description of the impact of the IMT on QoL and treatment satisfaction. This pilot study collected quantitative data through a survey approach and qualitative data through individual interviews. Participants were included if they had received the IMT procedure and completed rehabilitation within the past 3 yr, were at least age 65, and had access to a telephone.
METHOD: Six participants completed the World Health Organization Quality of Life–Brief (WHOQOL–BREF) and the Macular Treatment Satisfaction Questionnaire (MacTSQ), which assess QoL and treatment satisfaction, respectively. Survey results were analyzed using descriptive statistics to report frequencies and percentages. Additionally, we administered a self-developed questionnaire (piloted for validity) via a semistructured interview format. We analyzed the interview transcripts using a general inductive coding procedure. Each researcher closely read transcribed data, identified emerging categories and themes, reexamined the text to refine and narrow themes, and finally identified four main themes and three subthemes. Narrowed themes and subthemes were independently analyzed and then compared and contrasted to ensure a rigorous qualitative analysis and level of trustworthiness.
RESULTS: Responses on the WHOQOL–BREF (M = 15.97) and MacTSQ (M = 26.66) revealed moderately high QoL and treatment satisfaction ratings. Qualitative themes included loss of independence, realistic perspective about the procedure, importance of rehabilitation following the procedure, and high treatment satisfaction despite lack of improvement in visual functioning. Moderately high QoL ratings and treatment satisfaction were reported despite limited improvements in participants’ visual function and ability to use the IMT device. Previously established coping skills and strategies from a long-standing AMD diagnosis assisted participants in maintaining positive QoL and a realistic perspective of the IMT procedure.
CONCLUSION: Individuals who suffer from end-stage AMD had virtually no treatment options until recently with the development of the IMT device. The extensive challenges to occupational performance that accompany this diagnosis have been previously linked to a negative quality of life. Occupational therapists who provide low vision rehabilitation services to individuals who undergo the IMT procedure should be aware of and draw on these previously established coping strategies when setting treatment goals and developing effective interventions to improve occupational performance.
