The SHOnet learning health system: Infrastructure for continuous learning in pediatric rehabilitation.

Introduction: To describe the development and implementation of learning health system (LHS) infrastructure for a pediatric specialty care health system to support LHS research in pediatric rehabilitation settings. Methods: An existing pediatric common data model (eg, PEDSnet) of standardized medical terminologies for research was expanded and leveraged for this stud, and applied to SHOnet, a clinical research data resource consisting of deidentified data extracted from the electronic health record (EHR) from the Shriners Hospitals for Children speacialty pediatric health care system. We mapped EHR data for laboratory, procedures, drugs, and conditions to standardized vocabularies including ICD-10, CPT, RxNorm, and LOINC to the common data model using an established extraction-transformation-loading process. Rigorous quality checks were conducted to ensure a high degree of data conformance, completeness, and plausibility. SHOnet data elements from all sources are de-identified and the server is managed by the SHC Information Systems Department. SHOnet data are refreshed monthly and data elements are continually expanded based on new research endeavors. Interventions: Not applicable. Results: The Shriners Health Outcomes Network (SHOnet) includes data for over 10 000 distinct observational data elements based on over two million patient encounters between 2011 and present. Conclusion: The systematic process to develop SHOnet is replicable and flexible for other pediatric rehabilitation research settings interested in building out their LHS capabilities. Challenges and facilitators may arise for building such LHS infrastructure for rehabilitation in areas of (a) data capture, curation, query, and governance, (b) generating knowledge from data, and (c) dissemination and implementation of new institutional knowledge. Further research studies are needed to evaluate these data resources for scalable system-learning endeavors.SHOnet is an exemplar of an LHS for rehabilitation and specialty care settings. The success of an LHS is dependent on engagement of multiple stakeholders, shared governance, effective knowledge translation, and deep commitment to long-term strategies for engaging clinicians, administration, and families in leveraging knowledge to improve clinical outcomes.

Mode of Anesthesia and Bladder Management Following Orthopaedic Surgery in Children With Cerebral Palsy: A System Level Analysis.

BACKGROUND: Postoperative urinary retention (POUR) is a surgical complication more prevalent in children with neurodisability and associated with an increase length of hospitalization. Risk factors include pre-existing bladder dysfunction, type and duration of surgery, anesthesia medications, postoperative opioid pain management, and patient demographics. The purpose of this investigation was (1) to determine the frequency of POUR following hip/lower limb orthopaedic procedures in which epidural analgesia was used for pain management; (2) to explore factors influencing postoperative bladder management. METHODS: A retrospective analysis of clinical data was performed in an orthopaedic specialty care health care system. A health outcomes network was queried for patients with a diagnoses of cerebral palsy (ICD-9/10 codes) who had one of 57 unique CPT procedure codes corresponding to hip osteotomies or tenotomies from 2011 to 2019. All surgical observations included in analysis required a discrete data element and the confirmation of a secondary proxy. The database was also queried for postoperative medications received and patient demographics of interest. RESULTS: A total of 704 surgical procedures met inclusion criteria resulting in a patient population with a mean age of 11 years, 58% male, 53% Caucasian, and 55% classified as quadriplegia [51% Gross Motor Function Classification System (GMFCS) levels IV/V]. Three hundred and thirty-five procedures (48%) involved epidural anesthesia. Sixty-five patients required intermittent catheterization (9.2%) postoperatively following foley catheter removal, of which 23 (3.3%) required recatheterization. The rate of recatheterization was similar regardless of anesthesia mode; 1.8% for general and 1.4% for epidural and was associated with a greater number of pain medications. Epidural anesthesia resulted in significantly longer periods of catheterization. For the total group the time to urinary catheter removal differed significantly among cerebral palsy subtypes, GMFCS Level, race, and ethnicity. Factors identified as significant predictors of the length of catheterization were epidural analgesia, number of pain medications, and osteotomy. CONCLUSIONS: The number of postoperative pain medications utilized was more predictive of POUR than the mode of analgesia delivery; however, epidural analgesia and the type of surgical procedure did significantly impact the length of catheterization. LEVEL OF EVIDENCE: Level III.

Development of a standards-based phenotype model for gross motor function to support learning health systems in pediatric rehabilitation.

INTRODUCTION: Research and continuous quality improvement in pediatric rehabilitation settings require standardized data and a systematic approach to use these data. METHODS: We systematically examined pediatric data concepts from a pediatric learning network to determine capacity for capturing gross motor function (GMF) for children with Cerebral Palsy (CP) as a demonstration for enabling infrastructure for research and quality improvement activities of an LHS. We used an iterative approach to construct phenotype models of GMF from standardized data element concepts based on case definitions from the Gross Motor Function Classification System (GMFCS). Data concepts were selected using a theory and expert-informed process and resulted in the construction of four phenotype models of GMF: an overall model and three classes corresponding to deviations in GMF for CP populations. RESULTS: Sixty five data element concepts were identified for the overall GMF phenotype model. The 65 data elements correspond to 20 variables and logic statements that instantiate membership into one of three clinically meaningful classes of GMF. Data element concepts and variables are organized into five domains relevant to modeling GMF: Neurologic Function, Mobility Performance, Activity Performance, Motor Performance, and Device Use. CONCLUSION: Our experience provides an approach for organizations to leverage existing data for care improvement and research in other conditions. This is the first consensus-based and theory-driven specification of data elements and logic to support identification and labeling of GMF in patients for measuring improvements in care or the impact of new treatments. More research is needed to validate this phenotype model and the extent that these data differentiate between classes of GMF to support various LHS activities.

Evaluating Completeness of Discrete Data on Physical Functioning for Children With Cerebral Palsy in a Pediatric Rehabilitation Learning Health System.

OBJECTIVE: The purpose of this study was to determine the extent that physical function discrete data elements (DDE) documented in electronic health records (EHR) are complete within pediatric rehabilitation settings. METHODS: A descriptive analysis on completeness of EHR-based DDEs detailing physical functioning for children with cerebral palsy was conducted. Data from an existing pediatric rehabilitation research learning health system data network, consisting of EHR data from 20 care sites in a pediatric specialty health care system, were leveraged. Completeness was calculated for unique data elements, unique outpatient visits, and unique outpatient records. RESULTS: Completeness of physical function DDEs was low across 5766 outpatient records (10.5%, approximately 2 DDEs documented). The DDE for Gross Motor Function Classification System level was available for 21% (n = 3746) outpatient visits and 38% of patient records. Ambulation level was the most frequently documented DDE. Intercept only mixed effects models demonstrated that 21.4% and 45% of the variance in completeness for DDEs and the Gross Motor Function Classification System, respectively, across unique patient records could be attributed to factors at the individual care site level. CONCLUSION: Values of physical function DDEs are missing in designated fields of the EHR infrastructure for pediatric rehabilitation providers. Although completeness appears limited for these DDEs, our observations indicate that data are not missing at random and may be influenced by system-level standards in clinical documentation practices between providers and factors specific to individual care sites. The extent of missing data has significant implications for pediatric rehabilitation quality measurement. More research is needed to understand why discrete data are missing in EHRs and to further elucidate the professional and system-level factors that influence completeness and missingness. IMPACT: Completeness of DDEs reported in this study is limited and presents a significant opportunity to improve documentation and standards to optimize EHR data for learning health system research and quality measurement in pediatric rehabilitation settings.

Feasibility of computerized clinical decision support for pediatric to adult care transitions for patients with special healthcare needs.

The objective of this study was to determine the feasibility of a computerized clinical decision support (cCDS) tool to facilitate referral to adult healthcare services for children with special healthcare needs. A transition-specific cCDS was implemented as part of standard care in a general pediatrics clinic at a tertiary care academic medical center. The cCDS alerts providers to patients 17-26 years old with 1 or more of 15 diagnoses that may be candidates for referral to an internal medicine adult transition clinic (ATC). Provider responses to the cCDS and referral outcomes (e.g. scheduled and completed visits) were retrospectively analyzed using descriptive statistics. One hundred and fifty-two patients were seen during the 20-month observation period. Providers referred 87 patients to the ATC using cCDS and 77% of patients ≥18 years old scheduled a visit in the ATC. Transition-specific cCDS tools are feasible options to facilitate adult care transitions for children with special healthcare needs.

Barriers and facilitators to perceived diabetes self-management in Arab American patients with diabetes.

AIMS: To assess perceptions surrounding diabetes self-management (DSM) behaviors in Arab American patients with diabetes. METHODS: A 39-item survey was constructed from focus group discussions designed to better understand the impact of Arab American culture on DSM behaviors. The survey assessed perceptions about diet, adherence to medications, exercise, healthy lifestyle, and family support. RESULTS: Two hundred Arab Americans with diabetes completed the survey via face-to-face interviews. Most patients were female (59%), over fifty years of age (79%), and immigrated from Lebanon (73%). Receiving instructions in Arabic, having family support, family understanding of food choices, and employment status were found to be important predictors of the perceived importance of DSM. CONCLUSIONS: Our findings suggest that there are multiple factors that dictate Arab American's perception of the importance of DSM. The survey that was constructed may serve as a valuable tool for providers to assess DSM perceptions in order to provide patient-centered care that will help to improve diabetes outcomes. This study supports the importance of integrating cultural influences into DSM education and support when providing care to a population with a strong cultural identity.

Developing educational competencies for dissemination and implementation research training programs: an exploratory analysis using card sorts.

BACKGROUND: With demand increasing for dissemination and implementation (D&I) training programs in the USA and other countries, more structured, competency-based, and tested curricula are needed to guide training programs. There are many benefits to the use of competencies in practice-based education such as the establishment of rigorous standards as well as providing an additional metrics for development and growth. As the first aim of a D&I training grant, an exploratory study was conducted to establish a new set of D&I competencies to guide training in D&I research. METHODS: Based upon existing D&I training literature, the leadership team compiled an initial list of competencies. The research team then engaged 16 additional colleagues in the area of D&I science to provide suggestions to the initial list. The competency list was then additionally narrowed to 43 unique competencies following feedback elicited from these D&I researchers. Three hundred additional D&I researchers were then invited via email to complete a card sort in which the list of competencies were sorted into three categories of experience levels. Participants had previous first-hand experience with D&I or knowledge translation training programs in the past. Participants reported their self-identified D&I expertise level as well as the country in which their home institution is located. A mean score was calculated for each competency based on their experience level categorization. From these mean scores, beginner-, intermediate-, and advanced-level tertiles were created for the competencies. RESULTS: The card sort request achieved a 41 % response rate (n = 124). The list of 43 competencies was organized into four broad domains and sorted based on their experience level score. Eleven competencies were classified into the "Beginner" category, 27 into "Intermediate," and 5 into "Advanced." CONCLUSIONS: Education and training developers can use this competency list to formalize future trainings in D&I research, create more evidence-informed curricula, and enable overall capacity building and accompanying metrics in the field of D&I training and research.

TSH elevations as the first laboratory evidence for pseudohypoparathyroidism type Ib (PHP-Ib).

Hypocalcemia and hyperphosphatemia because of resistance toward parathyroid hormone (PTH) in the proximal renal tubules are the most prominent abnormalities in patients affected by pseudohypoparathyroidism type Ib (PHP-Ib). In this rare disorder, which is caused by GNAS methylation changes, resistance can occur toward other hormones, such as thyroid-stimulating hormone (TSH), that mediate their actions through G protein-coupled receptors. However, these additional laboratory abnormalities are usually not recognized until PTH-resistant hypocalcemia becomes clinically apparent. We now describe four pediatric patients, first diagnosed with subclinical or overt hypothyroidism between the ages of 0.2 and 15 years, who developed overt PTH-resistance 3 to 20 years later. Although anti-thyroperoxidase (anti-TPO) antibodies provided a plausible explanation for hypothyroidism in one of these patients, this and two other patients revealed broad epigenetic GNAS abnormalities, which included loss of methylation (LOM) at exons AS, XL, and A/B, and gain of methylation at exon NESP55; ie, findings consistent with PHP-Ib. LOM at GNAS exon A/B alone led in the fourth patient to the identification of a maternally inherited 3-kb STX16 deletion, a well-established cause of autosomal dominant PHP-Ib. Although GNAS methylation changes were not detected in additional pediatric and adult patients with subclinical hypothyroidism (23 pediatric and 39 adult cases), hypothyroidism can obviously be the initial finding in PHP-Ib patients. One should therefore consider measuring PTH, along with calcium and phosphate, in patients with unexplained hypothyroidism for extended periods of time to avoid hypocalcemia and associated clinical complications.