Interviews With Lay Caregivers About Their Experiences Supporting Patients Throughout Kidney Transplantation.

Introduction: Lay caregivers provide essential support to patients throughout the kidney transplant process, pretransplant through discharge. Sparse data exists about kidney transplant caregiver experience and facilitators of caregiver engagement. The aim of this study was to explore and describe lay caregivers' accounts of supporting a patient before and early after kidney transplantation. Methods: Caregivers of recent kidney transplant recipients were individually interviewed about their experiences, coping strategies, and perspectives of center-specific support approaches for patients and caregivers in a single transplant center. Results: Inductive content analysis of transcribed interviews with 23 caregivers revealed 6 domain areas: visit preparation, initial evaluation, caregiver role discussion, exposure to support resources, transplant preparedness, and coping styles. Caregivers used and appreciated information offered by the transplant center, including materials directed to the patient. They recommended repeating information, online access, and adding video to complement print resources. They valued and requested information directed to them, both within passive materials and communication with providers. Social network interactions were helpful for practical, emotional, and informational support. Support group reminders and connection pathways to peers were suggested for both patients and caregivers. Conclusion: Findings highlight steps that can be taken by transplant centers and may stimulate caregiver engagement. Featuring caregiver-focused information and communication more prominently may support caregivers to improve patient progress in navigating kidney transplantation.

Survey of the Faculty Status of Optometrists at Academic Medical Centers in the United States.

SIGNIFICANCE: This is the first study of the prevalence and faculty status of optometrists practicing at academic medical centers in the United States. PURPOSE: This study aimed to quantify the number of optometrists at academic medical centers, along with faculty rank and post-doctoral training programs. METHODS: The official Web sites of academic medical centers and schools of medicine in the United States were examined during the 2021 to 2022 academic year to identify departments of ophthalmology and collect faculty profiles of employed optometrists. Institutional data were cross-referenced and analyzed by geographic distribution. Data were gathered from the Association of Schools and Colleges of Optometry and Accreditation Council on Optometry Education to identify post-graduate training programs in optometry. RESULTS: A total of 192 academic medical centers were identified, of which 121 (63.02%) had a residency or fellowship program in ophthalmology and/or optometry. One hundred twenty-five (65.10%) of these institutions had at least one staff optometrist. Seven hundred eighteen optometrists were found at these institutions, representing 1.83% of the 39,205 practicing optometrists estimated in the United States. Of the 718 optometrists, 369 (51.39%) held an academic appointment at a medical school. The most common academic rank was assistant professor (184 [25.63%]), followed by instructor (138 [19.22%]), associate professor (34 [4.74%]), and full professor (13 [1.81%]). The distribution of academic rank was similar across all regions but varied between institutions as to whether all, some, or none of the optometric faculty were appointed by a medical school. Of 296 optometry residency programs in the United States, 21 (7.09%) were at an academic medical center. Of 15 optometric fellowship programs in the United States, 3 (20%) were at an academic medical center. Of the 192 institutions in this study, 22 (11.46%) had a post-doctoral optometric training program. CONCLUSIONS: This study shows the distribution of academic rank and post-doctoral training programs for optometrists at academic medical centers.

Using Community-Based Participatory Research to Create Animated Videos to Attenuate Disparities in Access to Kidney Transplant Information.

Introduction: Community-based participatory research and animated video offer promising approaches to attenuate disparities in access to kidney transplant information. Project Aims: We refined an evidence-based animated video curriculum (Kidney Transplant and Donation Information Made Easy) designed for diverse individuals, that is currently being trialed to advance kidney transplant access among referred patients at a single transplant center, to further accommodate information needs in earlier stages of the path to transplant (pre-referral) and to enhance fit for Black and Hispanic people. Design: We describe formation of an academic-community partnership and the application of qualitative research methods and partnership discussions to refine the Kidney Transplant and Donation Information Made Easy videos. A simple content analysis was undertaken of intervention refinement transcriptions, minutes, and meeting notes. Results: We formed a community steering committee and advisory board of local members predominantly of minoritized race or ethnicity. Full engagement with community members is evident in the program's adaptation process. Essential refinement elements were adaptation of 17 original videos and iterative development of 8 new videos with the community, conducting parallel cognitive interviews of an expanded sample of stakeholders, maintaining the theoretical grounding of Elaboration Theory, communication/multimedia learning best practices, and self-efficacy framework, and doing Spanish-language translation. Conclusions: Applying community-based participatory research principles and qualitative methods, we produced a culturally grounded adaptation of the Kidney Transplant and Donation Information Made Easy videos that provides information about kidney transplantation from primary care to transplantation. This approach is likely to strengthen our community partnership and eventual community acceptance of the intervention during the implementation phase. Challenges were achieving consensus and adding Spanish-language translation.

Vision-related quality of life in adults with severe peripheral vision loss: a qualitative interview study.

BACKGROUND: Existing patient-reported outcome (PRO) measures may not be relevant to the full range of functional and vision-related quality of life (VR-QOL) concerns of individuals with vision impairment due to severe peripheral field loss (PFL). Measurement of VR-QOL in severe PFL is important in order to determine the effectiveness of vision rehabilitation interventions for this population. The purpose of this study was to characterize the impact of severe PFL due to retinitis pigmentosa (RP) and glaucoma on VR-QOL as the initial phase in the development of a novel PRO measure. METHODS: Individuals with severe PFL due to RP or glaucoma were recruited from the Kellogg Eye Center and the Association for the Blind and Visually Impaired. Participants completed semi-structured qualitative interviews, the Impact of Vision Impairment (IVI) questionnaire and the RAND 36-Item Health Survey. Interviews were analyzed by two coders using thematic analysis. A matrix analysis was conducted to compare VR-QOL by cause of severe PFL. Sample size was determined by thematic saturation. RESULTS: The study included 37 participants (19 RP, 18 glaucoma). Median best-corrected visual acuity for those with RP and glaucoma was 20/40 and 20/27.5, while Pelli-Robson contrast sensitivity was 1.2 log contrast sensitivity (logCS) and 1.1 logCS, respectively. Median domain scores on the IVI (reading, mobility, well-being) ranged from a low of - 0.2 to a high of 0.7 logits in those with RP and from 0.5 to 1.2 logits in those with glaucoma. Qualitative interviews identified six VR-QOL themes relevant across participants with both RP and glaucoma, including activity limitations, driving, emotional well-being, reading, mobility, and social function. VR-QOL concerns were largely consistent among those with severe PFL due to RP and glaucoma. These overarching themes contained content relevant to specific challenges related to severe PFL. CONCLUSIONS: There are commonly occurring VR-QOL concerns among individuals with severe PFL due to RP and glaucoma. The outlined themes will serve as the basis for development of the Low Vision Severely Constricted Peripheral Eyesight (LV-SCOPE) Questionnaire.

Head-Mounted Display Technology for Low-Vision Rehabilitation and Vision Enhancement.

PURPOSE: To describe the various types of head-mounted display technology, their optical and human-factors considerations, and their potential for use in low-vision rehabilitation and vision enhancement. DESIGN: Expert perspective. METHODS: An overview of head-mounted display technology by an interdisciplinary team of experts drawing on key literature in the field. RESULTS: Head-mounted display technologies can be classified based on their display type and optical design. See-through displays such as retinal projection devices have the greatest potential for use as low-vision aids. Devices vary by their relationship to the user's eyes, field of view, illumination, resolution, color, stereopsis, effect on head motion, and user interface. These optical and human-factors considerations are important when selecting head-mounted displays for specific applications and patient groups. CONCLUSIONS: Head-mounted display technologies may offer advantages over conventional low-vision aids. Future research should compare head-mounted displays with commonly prescribed low-vision aids to compare their effectiveness in addressing the impairments and rehabilitation goals of diverse patient populations.

Redesigning the care of fragility fracture patients to improve osteoporosis management: a health care improvement project.

OBJECTIVE: To develop new processes that assure more reliable, population-based care of fragility fracture patients. METHODS: A 4-year clinical improvement project was performed in a multispecialty, community practice health system using evidence-based guidelines and rapid cycle process improvement methods (plan-do-study-act cycles). RESULTS: Prior to this project, appropriate osteoporosis care was provided to only 5% of our 1999 hip fracture patients. In 2001, primary physicians were provided prompts about appropriate care (cycle 1), which resulted in improved care for only 20% of patients. A process improvement pilot in 2002 (cycle 2) and full program implementation in 2003 (cycle 3) have assured osteoporosis care for all willing and able patients with any fragility fracture. Altogether, 58% of 2003 fragility fracture patients, including 46% of those with hip fracture, have had a bone measurement, have been assigned to osteoporosis care with their primary physician or a consultant, and are being monitored regularly. Only 19% refused osteoporosis care. Key process improvements have included using orthopedic billings to identify patients, referring patients directly from orthopedics to an osteoporosis care program, organizing care with a nurse manager and process management computer software, assigning patients to primary or consultative physician care based on disease severity, and monitoring adherence to therapy by telephone. CONCLUSION: Reliable osteoporosis care is achievable by redesigning clinical processes. Performance data motivate physicians to reconsider traditional approaches. Improving the care of osteoporosis and other chronic diseases requires coordinated care across specialty boundaries and health system support.