'Learn From Every Patient': implementation and early results of a learning health system.

AIM: The convergence of three major trends in medicine, namely conversion to electronic health records (EHRs), prioritization of translational research, and the need to control healthcare expenditures, has created unprecedented interest and opportunities to develop systems that improve care while reducing costs. However, operationalizing a 'learning health system' requires systematic changes that have not yet been widely demonstrated in clinical practice. METHOD: We developed, implemented, and evaluated a model of EHR-supported care in a cohort of 131 children with cerebral palsy that integrated clinical care, quality improvement, and research, entitled 'Learn From Every Patient' (LFEP). RESULTS: Children treated in the LFEP Program for a 12-month period experienced a 43% reduction in total inpatient days (p=0.030 vs prior 12mo period), a 27% reduction in inpatient admissions, a 30% reduction in emergency department visits (p=0.001), and a 29% reduction in urgent care visits (p=0.046). LFEP Program implementation also resulted in reductions in healthcare costs of 210% (US$7014/child) versus a Time control group, and reductions of 176% ($6596/child) versus a Program Activities control group. Importantly, clinical implementation of the LFEP Program has also driven the continuous accumulation of robust research-quality data for both publication and implementation of evidence-based improvements in clinical care. INTERPRETATION: These results demonstrate that a learning health system can be developed and implemented in a cost-effective manner, and can integrate clinical care and research to systematically drive simultaneous clinical quality improvement and reduced healthcare costs.

Integrating education for clinical practice change.

BACKGROUND: Children with chronic medical conditions and their families have significant emotional health concerns, yet paediatricians are often ill-equipped to address these needs. The American Board of Pediatrics launched the Roadmap Project to better support emotional health as part of routine care. We present pilot work in paediatric training programmes to test educational approaches and explore lessons learned. APPROACH: Four institutions implemented Roadmap tools into their paediatric training programmes, either incorporating them into existing educational structures or embedding them into the clinical workplace. One programme utilised an existing longitudinal curriculum, and another incorporated into a block rotation. Two programmes embedded training for residents into a larger programme for the healthcare team within the clinical space, one in outpatient clinics and one in an inpatient service. EVALUATION: Evaluation strategies at each site matched the intended outcomes. Sites working within education programmes evaluated learners, demonstrating increases in resident skills and confidence on pre-/post-self-assessments. Sites embedding tools into the practice context measured changes in the clinical practice of the healthcare team. Despite variability in implementation, all approaches improved trainee skills; sites embedding education into a clinical setting saw greater changes in clinical practice. IMPLICATIONS: Our pilot provided structure yet allowed for flexibility, and all sites improved trainee skills. Engaging the entire healthcare team within practice settings appears advantageous, thus embedding education into clinical practice may be preferable to a separate education programme. Similar to outcomes found in interprofessional education (IPE), educating clinical teams together may be more impactful for cultural shifts needed for changing clinical practice.

Descriptive Analysis of Documentation Time for the National Developmental-Behavioral Pediatric Physician Workforce Using a Commercial Electronic Health Record System.

OBJECTIVE: The national developmental-behavioral pediatric (DBP) workforce struggles to meet current service demands because of several factors. Lengthy and inefficient documentation processes are likely to contribute to service demand challenges, but DBP documentation patterns have not been sufficiently studied. Identifying clinical practice patterns may inform strategies to address documentation burden in DBP practice. METHODS: Nearly 500 DBP physicians in the United States use a single commercial electronic health record (EHR) system (EpicCare Ambulatory, Epic Systems Corporation, Verona WI). We evaluated descriptive statistics using the US Epic DBP provider data set. We then compared DBP documentation metrics against those of pediatric primary care and selected pediatric subspecialty providers who provide similar types of care. One-way analyses of variance (ANOVAs) were conducted to determine whether outcomes differed among provider specialties. RESULTS: We identified 4 groups for analysis from November 2019 through February 2020: DBP (n = 483), primary care (n = 76,423), pediatric psychiatry (n = 783), and child neurology (n = 8589). Post hoc pairwise comparisons revealed statistically significant differences between multiple outcome-specialty combinations. Time in notes per appointment and progress note length demonstrated the strongest evidence of an increased burden on DBP providers compared with other similar provider groups. CONCLUSION: DBP providers spend a significant amount of time documenting progress notes both during and outside of normal clinic hours. This preliminary analysis highlights the utility of using EHR user activity data to quantitatively measure documentation burden.

Early clinical indicators of developmental outcome in abusive head trauma.

PURPOSE: The purpose of the study was to determine the developmental prognostic significance of early clinical indicators in abusive head trauma. METHODS: Seventy-one children were diagnosed with abusive head trauma and followed in a post-injury growth and development clinic. A retrospective chart review was completed to gather clinical features at the time of injury, including presence or absence of early post-traumatic seizures, presence or absence of intubation, and presence or absence of pediatric intensive care unit admission. Children then underwent developmental testing with use of the Capute Scales of the Cognitive Adaptive Test (CAT) and the Clinical Linguistic and Auditory Milestone Scale (CLAMS) during follow-up clinic visits. Clinical features at initial injury were compared to developmental outcome. RESULTS: Thirty-four of 71 patients with seizures during their admission hospitalization scored significantly lower on follow-up developmental testing than patients who did not have seizures. Twenty-one of 71 patients who required intubation scored lower on developmental testing than patients who did not require intubation. Thirty-five of 71 patients who required pediatric intensive care unit admission scored lower on developmental testing than patients who did not require pediatric intensive care unit admission. CONCLUSIONS: This study demonstrates that clinical factors at the time of injury, such as early post-traumatic seizures and intubation requirement, are associated with poorer developmental outcome. This study also suggests that close developmental follow-up should be obtained for all children with abusive head trauma, regardless of whether or not the child was admitted to the PICU.

Lessons learned in the development of a nurse-led family centered approach to developing a holistic comprehensive clinic and integrative holistic care plan for children with cerebral palsy.

CLINICAL PROBLEM: Children with cerebral palsy (CP) typically receive care from multiple specialty providers including Developmental Pediatrics, Orthopedics, Physical Medicine, Occupational Therapy, Physical Therapy, Speech Therapy, Clinical Social Work, Clinical Nutrition, Nursing and Orthotists, which often require many individual visits to the hospital annually. The potential for conflicting plans of care is increased by this fragmented approach, which may lead to duplication of services and increased healthcare costs. SOLUTION: To address the problem and alleviate burden for families, the Comprehensive Cerebral Palsy Program implemented a nurse-led comprehensive interdisciplinary team approach to provide optimal care coordination to patients and families, using an Integrative Holistic Care Plan (IHCP). During an annual 3-4 hour Comprehensive CP Clinic appointment, a team of specialists meets with the family, and a holistic, evidence-based plan of care is developed. The family-centered care plan includes summaries of each discipline's plan of care with individualized goals, recommendations, and evidence-based outcomes. After the visit, the plan of care is communicated with the family, primary care provider, and other community providers to ensure continuity of care. RESULTS: Early in the program and electronic IHCP development stage, clinical, and financial outcomes were improved. In addition to significant cost savings, family satisfaction surveys showed continuous improvement in the areas of access, communication, and coordination of care. PRACTICE IMPLICATIONS: Nurses working in interdisciplinary clinics are in a position to facilitate improved outcomes by developing and implementing a family-centered care plan that provides a comprehensive holistic approach to impacting the areas of quality, effectiveness, and efficiency of care delivery. The use of an IHCP decreases fragmentation of care and duplication of services leading to healthcare cost savings and enhanced patient satisfaction.

Unexpected detection of dystrophin gene deletions by array comparative genomic hybridization.

Array comparative genomic hybridization has increasingly become the standard of care to evaluate patients for genomic imbalance. As the patient population evaluated by microarray expands, there is certain to be an increase in the detection of unexpected, yet common diseases. When array results predict a late-onset disorder or cancer predisposition, it becomes a challenge for physicians and counselors to adequately address with patients. Included in this study were three patients described with nonspecific phenotypic findings who underwent microarray testing to better define their disease etiology. An unexpected deletion within the dystrophin gene was observed in each case, despite that no patient was suspected of a dystrophinopathy at the time of testing. The patients included an 8-day-old male with a dystrophin deletion predictive of Becker muscular dystrophy, an 18-month old female found to be the carrier of deletion, and a 4-year-8-month-old male with a deletion predictive of Duchenne muscular dystrophy. In this circumstance it becomes difficult to counsel the family, as well as to predict disease course when underlying medical conditions may exist. However, early detection may enable the patient to receive proactive treatment, and allows for screening of at-risk family members. Ultimately, it is up to the clinician to promote informed decision-making within the family prior to testing, and ensure that adequate counseling is provided during follow-up.

Results of the Sensory Profile in children with suspected childhood apraxia of speech.

Speech-sound disorders are common in preschool-age children, and are characterized by difficulty in the planning and production of speech sounds and their combination into words and sentences. The objective of this study was to review and compare the results of the Sensory Profile (Dunn, 1999) in children with a specific type of speech-sound disorder, childhood apraxia of speech (CAS), and to explore the relationship between sensory processing and sound-production deficits. Participants were identified prospectively through an interdisciplinary apraxia clinic at a tertiary care pediatric hospital, and results of the Sensory Profile were compiled and reviewed. Thirty-eight children aged 3 to 10 years with suspected CAS were evaluated from July 2003 to July 2005. The results of the Sensory Profile indicated a difference for these children in several factor clusters when compared to typical peers from the normative population of the Sensory Profile. These findings imply that children with suspected CAS may present with differences in sensory processing in addition to speech impairment. When present, these differences in sensory processing could be addressed with specific therapeutic approaches through occupational therapy or consultation with an occupational therapist.

Fine motor function and oral-motor imitation skills in preschool-age children with speech-sound disorders.

Preschool-aged children with speech-sound disorders may be at risk for associated deficits in fine motor function. The objectives of this study were 2-fold: (1) to determine whether abnormalities in fine motor function could be detected in 2- to 5-year-old children with speech-sound disorders and (2) to determine whether there was a correlation between abnormal oral-motor imitation skills and abnormal fine motor function. Thirty-two children with speech-sound disorders (6 female, 26 male) were prospectively evaluated from July 2003 to July 2005, and the Peabody Developmental Motor Scales and the Kaufman Speech Praxis Test for Children were administered. The presence of abnormal oral-motor imitation skills as measured by the Kaufman Speech Praxis Test was associated with below-average fine motor performance. This finding has important implications for evaluation and treatment of preschool children with severe speech-sound disorders.

Incidence of brain creatine transporter deficiency in males with developmental delay referred for brain magnetic resonance imaging.

Several case reports describe children with global developmental delay who have brain creatine deficiency, where the deficiency was due to a lack of creatine transport into the brain or altered creatine synthesis. The purpose of this study was to determine what percentage of males with developmental delay referred for brain magnetic resonance imaging (MRI) at the authors' institution in a 12-month period was found to have brain creatine deficiency due to a defect in the creatine transporter gene. In the authors' facility, single voxel proton magnetic resonance spectroscopy (MRS) is routinely performed on any male child age 2 to 18 years with a history of language and/or developmental delay referred for a brain MRI. Charts for the 12-month time period were retrospectively reviewed. Fourteen subjects met inclusion criteria for global developmental delay. Two of the 14 patients had brain creatine deficiency on MRS. In the remaining 12, other structural and white matter abnormalities were identified. This study suggests that brain creatine deficiency is an important consideration in the differential diagnosis of males with global developmental delay referred for brain MRI; brain MRS should be considered in such cases.

Constraint-induced aphasia therapy stimulates language recovery in patients with chronic aphasia after ischemic stroke.

BACKGROUND: Constraint-induced aphasia therapy (CIAT) offers potential benefits to individuals with history of aphasia-producing ischemic stroke. The goals of this pilot study were to implement the original German CIAT protocol, refine the treatment program, and confirm its efficacy in patients with chronic aphasia. MATERIAL/METHODS: We translated and modified the original CIAT protocol to include a hierarchy of individual skill levels for semantic, syntactic, and phonological language production, while constraining non-use behaviors. Three male participants with moderate to severe post-stroke aphasia received CIAT 3-4 hours/day for 5 consecutive days. Pre and post-testing included formal language evaluation, linguistic analysis of story retell, and mini-Communication Activity Log (mini-CAL). RESULTS: Substantial improvements in comprehension and verbal skills were noted in 2 patients with an increase in the total number of words (31% and 95%) and in number of utterances for story-retell task (57% and 75%). All participants demonstrated an improvement on at least one linguistic measure. No subjective improvements on mini-CAL were noted by any of the participants. CONCLUSIONS: Given that the duration of treatment was only 1 week, these linguistic improvements in post stroke aphasia participants were remarkable. The results indicate that the CIAT protocol used in this study may be a useful tool in language restoration after stroke. These initial findings should be confirmed in a larger, randomized study.