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P. P. Lee, W. Rafferty, D. Lobach, S. Asrani, S. Keatts, J. Caldwell; Qualitative Assessment of Patient and Provider Desires for Information on Glaucoma Care. Invest. Ophthalmol. Vis. Sci. 2009;50(13):5710.
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Patients with open-angle glaucoma (OAG) receive care that varies from evidence-based recommendations, will fail to follow-up for care in a timely fashion and do not consistently use recommended treatment. As such, preventable blindness and loss of vision continue to occur. Greater patient involvement and interventions that assist providers at the point of care are two key factors known to improve care and outcomes. As part of a new NEI trial to determine the effectiveness of interventions to improve glaucoma care, we assessed the components of information that patients should receive from the perspectives of both providers and patients with OAG.
A literature review, data from prior work, and interviews with providers and patients with OAG were used to create focus group scripts for 2 provider and 2 patient groups. Discussions included the type of information, the extent and level of detail of the information, and the content of a tailored, visit-based patient report on care provided relative to practice guidelines. Content analyses were performed to identify key concepts and specific details.
Both providers and patients expressed strong support for the concept of patient education and empowerment. Interestingly, there were relatively fewer differences than might be expected in the specific nature of the information to be provided to patients. Providers were concerned about providing too much information to patients and did not want to present information that indicated deviation from practice guidelines, preferring data to be presented in the form of "steps to be done at the next visit." Patients also did not want too much information, preferring information that they could understand and having materials they could study over time (web-based, print, or other media).
Receiving not only information about OAG but also specific information about the content of a patient’s care relative to professional guidelines was felt to be important and acceptable by both providers and patients. Surprisingly, patients did not express a strong desire to know if their provider was delayed in meeting practice guideline recommendations, preferring to receive information about future care visits. Thus, interventions to empower patients by incorporating data about their care relative to practice guidelines may be a promising approach to enhancing the quality and outcomes of care.
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