Background Patient-reported outcomes (PROs) are gaining recognition as key measures for improving the quality of patient care in clinical care settings. Three factors have made the implementation of PROs in clinical care more feasible: increased use of modern measurement methods in PRO design and validation, rapid progression of technology (e.g., touch screen tablets, Internet accessibility, and electronic health records (EHRs)), and greater demand for measurement and monitoring of PROs by regulators, payers, accreditors, and professional organizations. As electronic PRO collection and reporting capabilities have improved, the challenges of collecting PRO data have changed. Objectives To update information on PRO adoption considerations in clinical care, highlighting electronic and technical advances with respect to measure selection, clinical workflow, data infrastructure, and outcomes reporting. Methods Five practical case studies across diverse healthcare settings and patient populations are used to explore how implementation barriers were addressed to promote the successful integration of PRO collection into the clinical workflow. The case studies address selecting and reporting of relevant content, workflow integration, pre-visit screening, effective evaluation, and EHR integration. Conclusions These case studies exemplify elements of well-designed electronic systems, including response automation, tailoring of item selection and reporting algorithms, flexibility of collection location, and integration with patient health care data elements. They also highlight emerging logistical barriers in this area, such as the need for specialized technological and methodological expertise, and design limitations of current electronic data capture systems.
Aim To compare the effects of a supported speed treadmill training exercise program (SSTTEP) with exercise on spasticity, strength, motor control, gait spatiotemporal parameters, gross motor skills, and physical function. Method Twenty‐six children (14 males, 12 females; mean age 9y 6mo, SD 2y 2mo) with spastic cerebral palsy (CP; diplegia, n=12; triplegia, n=2; quadriplegia n=12; Gross Motor Function Classification System levels II–IV) were randomly assigned to the SSTTEP or exercise (strengthening) group. After a twice daily, 2‐week induction, children continued the intervention at home 5 days a week for 10 weeks. Data collected at baseline, after 12‐weeks’ intervention, and 4 weeks after the intervention stopped included spasticity, motor control, and strength; gait spatiotemporal parameters; Gross Motor Function Measure (GMFM); and Pediatric Outcomes Data Collection Instrument (PODCI). Results Gait speed, cadence, and PODCI global scores improved, with no difference between groups. No significant changes were seen in spasticity, strength, motor control, GMFM scores, or PODCI transfers and mobility. Post‐hoc testing showed that gains in gait speed and PODCI global scores were maintained in the SSTTEP group after withdrawal of the intervention. Interpretation Although our hypothesis that the SSTTEP group would have better outcomes was not supported, results are encouraging as children in both groups showed changes in function and gait. Only the SSTTEP group maintained gains after withdrawal of intervention.
Purpose To develop a practical, efficient, and valid pediatric global health measure that would be useful for clinical, quality improvement, and research applications. Methods Using the PROMIS mixed-methods approach for item bank development, we identified an item pool that was well understood by children as young as age 8 years, and tested its psychometric properties in an internet panel sample of 3,635 children 8–17 years-old and 1,807 parents of children 5–17 years-old. Results The final version of the pediatric global health measure included 7 items assessing general, physical, mental, and social health. Four of these items had the same wording as the PROMIS adult global health measure. Internal consistency was 0.88 for the child-report form and 0.84 for the parent form; both had excellent test-retest reliability. The measures showed factor invariance across age categories. There was no differential item functioning by age, gender, race, or ethnicity. Because the measure includes the general health rating question, it is possible to estimate the pediatric global health scale using this widely used single item. Conclusions The PROMIS Pediatric Global Health measure is a brief and reliable 7-item summary assessment of a child’s self-reported health. Future work will attempt to statistically link this pediatric form with the PROMIS adult global health measures to create a single global health metric that can be used across the life course.
BackgroundA better understanding of the natural history of osteogenesis imperfecta (OI) in adulthood should improve health care for patients with this rare condition.MethodsThe 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.ResultsAdults 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.ConclusionsAdults 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.Electronic supplementary materialThe online version of this article (doi:10.1186/s13023-015-0362-2) contains supplementary material, which is available to authorized users.
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