Patient Satisfaction in Neurodevelopmental Pediatrics: In-Person vs Telemedicine.

BACKGROUND: As a result of the COVID-19 pandemic, medical practices for children with neurodevelopmental disorders urgently adopted telehealth, despite limited data regarding patient satisfaction. OBJECTIVE: To compare patient satisfaction survey scores for neurodevelopmental pediatric appointments completed in-person to appointments completed via telemedicine. METHODS: Using routinely collected Press Ganey survey results, the proportion of Top Box scores (the percentage of responses in the highest possible category [ie, the percentage of "very good" or "always" responses]) for an in-person only group was compared to the proportion in a telemedicine-only group using Fisher's exact test. RESULTS: Most respondents gave Top-Box scores in response to all of the questions for both in-person and telemedicine visits. There were no statistically significant differences in any domain of the Press Ganey surveys in Top Box percentages for in-person vs telemedicine visits. CONCLUSION: This study provides preliminary evidence that telehealth may be an acceptable modality for families seeking care for their children with neurodevelopmental concerns.

Initial report of the osteogenesis imperfecta adult natural history initiative.

BACKGROUND: A better understanding of the natural history of osteogenesis imperfecta (OI) in adulthood should improve health care for patients with this rare condition. METHODS: The Osteogenesis Imperfecta Foundation established the Adult Natural History Initiative (ANHI) in 2010 to give voice to the health concerns of the adult OI community and to begin to address existing knowledge gaps for this condition. Using a web-based platform, 959 adults with self-reported OI, representing a wide range of self-reported disease severity, reported symptoms and health conditions, estimated the impact of these concerns on present and future health-related quality of life (QoL) and completed a Patient-Reported Outcomes Measurement Information System (PROMIS®) survey of health issues. RESULTS: Adults with OI report lower general physical health status (p < .0001), exhibit a higher prevalence of auditory (58% of sample versus 2-16% of normalized population) and musculoskeletal (64% of sample versus 1-3% of normalized population) concerns than the general population, but report generally similar mental health status. Musculoskeletal, auditory, pulmonary, endocrine, and gastrointestinal issues are particular future health-related QoL concerns for these adults. Numerous other statistically significant differences exist among adults with OI as well as between adults with OI and the referent PROMIS® population, but the clinical significance of these differences is uncertain. CONCLUSIONS: Adults with OI report lower general health status but are otherwise more similar to the general population than might have been expected. While reassuring, further analysis of the extensive OI-ANHI databank should help identify areas of unique clinical concern and for future research. The OI-ANHI survey experience supports an internet-based strategy for successful patient-centered outcomes research in rare disease populations.

Wound care challenges in children and adults with spina bifida: an open-cohort study.

Skin breakdown is a frequent concern for individuals with spina bifida. We explored wound incidence in patients with spina bifida and how it varies across a person's life span and functional neurologic level. We examined the settings in which skin breakdown most commonly occurred, looking for evidence of chronic, non-healing wounds. We also sought to develop criteria to improve wound monitoring. We identified reported wound episodes in an open-cohort study over a 13-year period, examining the hospital and outpatient clinical records of spina bifida patients at Children's National Medical Center (CNMC). Current age, age at wound presentation, sex, weight, functional neurologic level, wound location, setting in which the wound was acquired, the development of a chronic wound, and presence of a shunt were recorded. Of the 376 patients in our clinical population, 123 (average age: 18.8 years, range: infancy-56 years) developed a total of 375 wounds; the majority of patients who developed one wound went on to develop one or more additional wounds, and 20 patients developed chronic wounds. Our data suggest that age bracket (adolescents), wheelchair use, and bare feet, as well as possibly obesity and reduced executive functioning, are key risk factors for wound development. These findings have led to a focused effort to increase wound education and prevention. In addition we report on our early experience using a wound care specialist to champion this initiative.

Bone quality: educational tools for patients, physicians, and educators.

BACKGROUND: Defining bone quality remains elusive. From a patient perspective bone quality can best be defined as an individual's likelihood of sustaining a fracture. Fracture risk indicators and performance measures can help clinicians better understand individual fracture risk. Educational resources such as the Web can help clinicians and patients better understand fracture risk, communicate effectively, and make decisions concerning diagnosis and treatment. QUESTIONS/PURPOSES: We examined four questions: What tools can be used to identify individuals at high risk for fracture? What clinical performance measures are available? What strategies can help ensure that patients at risk for fracture are identified? What are some authoritative Web sites for educating providers and patients about bone quality? METHODS: Using Google, PUBMED, and trademark names, we reviewed the literature using the terms "bone quality" and "osteoporosis education." Web site legitimacy was evaluated using specific criteria. Educational Web sites were limited to English-language sites sponsored by nonprofit organizations RESULTS: The Fracture Risk Assessment Tool® (FRAX®) and the Fracture Risk Calculator (FRC) are reliable means of assessing fracture risk. Performance measures relating to bone health were developed by the AMA convened Physician Consortium for Performance Improvement® and are included in the Physician Quality Reporting Initiative. In addition, quality measures have been developed by the Joint Commission. Strategies for identifying individuals at risk include designating responsibility for case finding and intervention, evaluating secondary causes of osteoporosis, educating patients and providers, performing cost-effectiveness evaluation, and using information technology. An abundance of authoritative educational Web sites exists for providers and patients. CONCLUSIONS: Effective clinical indicators, performance measures, and educational tools to better understand and identify fracture risk are now available. The next challenge is to encourage broader use of these resources so that individuals at high risk for fracture will not just be identified but will also adhere to therapy.

Breakout session: Sex/Gender and racial/ethnic disparities in the care of osteoporosis and fragility fractures.

BACKGROUND: Recent epidemiologic and clinical data suggest men and racial and ethnic minorities may receive lower-quality care for osteoporosis and fragility fractures than female and nonminority patients. The causes of such differences and optimal strategies for their reduction are unknown. QUESTIONS/PURPOSES: A panel was convened at the May 2010 American Academy of Orthopaedic Surgeons/Orthopaedic Research Society/Association of Bone and Joint Surgeons Musculoskeletal Healthcare Disparities Research Symposium to (1) assess current understanding of sex/gender and racial/ethnic disparities in the care of osteoporosis and after fragility fractures, (2) define goals for improving the equity and quality of care, and (3) identify strategies for achieving these goals. WHERE ARE WE NOW?: Participants identified shortcomings in the quality of care for osteoporosis and fragility fractures among male and minority populations and affirmed a need for novel strategies to improve the quality and equity of care. WHERE DO WE NEED TO GO?: Participants agreed opportunities exist for health professionals to contribute to improved osteoporosis management and secondary fracture prevention. They agreed on a need to define standards of care and management for osteoporosis and fragility fractures and develop strategies to involve physicians and other health professionals in improving care. HOW DO WE GET THERE?: The group proposed strategies to improve the quality and equity of osteoporosis and care after fragility fractures. These included increased patient and physician education, with identification of "champions" for osteoporosis care within and outside of the healthcare workforce; creation of incentives for hospitals and physicians to improve care; and research comparing the effectiveness of approaches to osteoporosis screening and fracture management.