A Workflow to Integrate Psychoeducational Data into the Electronic Medical Record and National Spina Bifida Registry

Abstract

Introduction:

Although learning challenges are common in spina bifida (SB), psychoeducational data are not systematically collected by most SB centers.

Methods:

We developed a workflow to obtain psychoeducational data directly from schools, thereby improving the integration of intelligence quotient (IQ) scores into the electronic medical records and the National Spina Bifida Patient Registry (NSBPR) at the Spina Bifida Center of Central New York. Outcome measures included the percentage of psychoeducational records integrated into the electronic medical record and the percentage of IQ scores entered into the NSBPR. Process measures included timestamp data to track the time required to retrieve records. Process control charts were used to measure our monthly record collection.

Results:

We obtained records for 29 of 57 consecutive school-aged patients who were seen at our SB center for more than 6 months (50% return rate). IQ scores were present in 18 of 29 records (62% yield). The percentage of IQ scores entered into the NSBPR increased from 5.4% to 29.7%. Most schools responded to record requests within 1 week. Record return rates dropped in September. Clerical support staff managed most of the workflow, spending an average of 14.5 minutes per patient.

Conclusions:

The workflow increased our ability to advocate for educational accommodations for our patients. We plan to share the workflow with other centers to facilitate the integration of cognitive data into the NSBPR, thereby improving our understanding of health and social outcomes for individuals with SB.

INTRODUCTION

Problem Description

This study aimed to enhance the collection and integration of psychoeducational data into the electronic medical records (EMRs) and the National Spina Bifida Patient Registry (NSBPR) at the Spina Bifida Center of Central New York. Like most centers that participate in the NSBPR, our center lacked an adequate process for incorporating psychoeducational data into the EMR and the NSBPR. For years, our scheduling team routinely asked families to bring a copy of their child’s psychoeducational records to appointments. However, most families either forgot or did not have their own copies to bring. This observation motivated us to develop a formal workflow to obtain records directly from schools.

Available Knowledge

Spina bifida (SB) is the most common permanently disabling congenital disorder of the nervous system, occurring in 1 of every 2,875 births each year in the United States.¹ Babies born with myelomeningocele, the most severe form of SB, have an open spinal defect involving both the meninges and the spinal cord. Depending on the extent of the lesion, this can result in paraplegia, neurogenic bowel, neurogenic bladder, hydrocephalus, the Chiari II malformation, and other cerebellar, midbrain, and corpus callosum malformations. Although SB affects the brain as well as the spine, people have historically perceived it as a physical disability. The learning challenges associated with SB are often overlooked.²

The neurocognitive pattern documented in SB involves strengths in learning and performing tasks that rely on associative, rule-based processing (eg, math facts, vocabulary) and weaknesses in learning and performance that involve constructing or integrating information (eg, math problem-solving, reading comprehension).³ The overarching challenge is with “assembled processing” and executive functioning.⁴

Although the full-scale intelligence quotient (FSIQ) is often within the typical range,⁵ children with SB may also have difficulties with visual-spatial reasoning and with the comprehension and use of language in context. The learning challenges associated with SB impact both academic performance and social participation.⁶

Rationale

School districts typically identify learning disabilities through psychoeducational testing, which evaluates a person’s cognitive, academic, and social-emotional skills. Testing helps guide the implementation of educational accommodations and supports. These tests identify some, but not all, aspects of the neurocognitive profile of children with SB. Guidelines from the Spina Bifida Association recommend that a more comprehensive neuropsychological assessment be performed, when available, to document and monitor cognitive functioning in children with SB.⁷

Unfortunately, insurance providers rarely cover the cost of neuropsychological assessments, and many SB centers lack a neuropsychologist on staff. It is therefore crucial that medical teams at SB centers collaborate with schools to obtain psychoeducational records to document patients’ learning profiles for inclusion in their medical records. Medical teams can, in turn, collaborate with families and schools to develop accommodations that address both physical and learning disabilities in the child’s Individualized Education Program (IEP) or 504 Plan (Section 504, U.S. Department of Education). Interagency and interprofessional collaboration is paramount for providing a framework that aligns and coordinates medical treatment plans and educational goals to improve students’ academic and health outcomes.⁸

The NSBPR collects information from patients at regional SB centers to understand the associations between medical procedures and health outcomes. Funded by the Centers for Disease Control and Prevention, the NSBPR represents approximately 11,000 people from 20 SB clinics across the United States. The NSBPR identifies best practices in SB care, compares care provided in clinics, population groups, and geographic areas, and guides and prioritizes future SB research.⁹ In 2019, the NSBPR introduced a data field to record FSIQ. As of 2022, only 4% of patients enrolled in the NSBPR had documented FSIQ data.¹⁰ This finding highlights the need for a workflow process to improve data reporting on this topic.

Specific Aim

The objectives of this project were to increase the collection and integration of school-based psychoeducational data into the EMR and NSBPR at our regional SB center, to improve multidisciplinary patient care, and to advance SB research by creating a workflow that other registry sites can replicate to integrate cognitive data into the NSBPR. Although we recognize that the intelligence quotient (IQ) is an incomplete metric, we collected these data because the NSBPR chose to record IQ. Using a quality improvement framework,¹¹ our interdisciplinary SB team developed a specific, measurable, achievable, relevant, and time-bound (SMART) aim statement: “To increase overall integration of FSIQ scores of school-aged patients with SB into the EMR and the NSBPR from 5% on April 1, 2023, to 50% by October 31, 2023, and sustain for 6 months.”

METHODS

Context

We conducted this quality improvement project at the Spina Bifida Center of Central New York, a state-funded, hospital-based clinic in Syracuse, New York, serving an urban population. It serves 24 counties, including several small cities and a vast rural population. The center has offered comprehensive care to both children and adults with SB for nearly 50 years. The pediatric program currently provides care to 128 patients aged 0–21 years. The center participates in the Spina Bifida Clinical Care Network and contributes data to the Centers for Disease Control and Prevention’s NSBPR. The center is staffed with a neurodevelopmental pediatrician, a physical therapist, a social worker, a nurse, and a part-time registry coordinator.

Our social worker developed the workflow for this project as part of a “Quality Scholars” initiative sponsored by the Department of Pediatrics at Upstate Medical University. Our registry coordinator collected and entered all data into the NSBPR. Our neurodevelopmental pediatrician, who also serves as the center’s medical director, supervised the data entry into our EMR (Epic Systems, Verona, WI). Our P-chart was created using QI Macros computer software (KnowWare International, Inc., Denver, CO).¹²

Intervention

Patients enrolled in the NSBPR were invited to participate in our quality improvement initiative during their annual comprehensive care visit. We used a Health Insurance Portability and Accountability Act-compliant Release of Information (ROI) form routinely used at our institution to request school records. Our registry coordinator faxed these forms to the child’s school, along with a request for psychoeducational records. The registry coordinator timestamped the dates the records were requested and received. We offered enrollment to all individual, consecutive patients aged 5–21 years who were seen for annual comprehensive care visits at our center between April 1, 2023, and October 31, 2023. Our team tracked the number of clinic encounters and records received each month. We determined that record retrieval was successful if records were received by October 31, 2023.

Figure 1 summarizes the key drivers and interventions for the SMART aim. Our center refined the workflow using an iterative, 4-stage problem-solving model, specifically the Plan-Do-Study-Act (PDSA) cycle. Figure 2 summarizes the PDSA cycles for this project. Figure 3 presents our process map that describes the final workflow.

Fig. 1.

SMART aim and key driver diagram. This figure presents our driver diagram, a visual tool that displays our SMART aim, primary drivers, and change ideas to improve the integration of psychoeducational data into the EMR and the national SB registry.

Fig. 2.

PDSA cycles. PDSA ramp displays a series of testing cycles that build on one another to achieve a sustainable change goal. This PDSA illustrates how our team developed its workflow during a 5-month period, starting with small tests and progressing to broader implementation. Pts, patients.

Fig. 3.

Process map. A process map is a visual representation of a workflow that shows the start and end points (terminators), process steps, decisions, and questions involved in achieving a goal. This process map shows the steps and barriers in our workflow for retrieving and integrating psychoeducational data.

Study of the Interventions

We used our process map and PDSA cycles to identify barriers to our record collection and updated both to reflect necessary changes. Throughout this project, we identified barriers to record collection. When schools did not respond to our record request within 2 weeks, we decided that our registry coordinator would call schools to confirm the correct fax number. Once we confirmed the correct number, our team decided to fax additional record requests to the school twice more. We obtained records in response to a second fax request for several patients, but the third request yielded no records. Obtaining ROIs was also identified as a barrier if the patient was seen via telehealth. For patients seen via telehealth, we mailed them an ROI to sign and return to us in a stamped, self-addressed envelope.

Measures

This study focused on school-aged patients aged 5–21 years between April 1, 2023, and October 31, 2023. Our baseline measurement was the percentage of patients in that age group at our center with psychoeducational records in the EMR and with FSIQ scores entered into the NSBPR. Outcome measures included the percentage of records collected during the study period; the percentage of data integrated into the EMR after reviewing records and adding an addendum to the clinic note; the percentage of IQ scores entered into the EMR; and the percentage of IQ scores entered into the NSBPR.

Process measures included timestamp data documenting how long it took schools to provide records. Process control charts¹³ were used to evaluate our monthly progression in record collection (records received expressed as a percentage of records requested each month). We calculated the average time it took our registry coordinator to request and collect records, and the average time it took for our medical director to review records and dictate an addendum to the clinic note.

Analysis

At baseline, we identified 74 active patients on our clinic roster aged 5–21 years. School records were present in the EMR for 5 of these patients (6.7%), and an FSIQ was entered into the NSBPR for 4 of them (5.4%). Between April 1 and October 31, 2023, 57 patients aged 5–21 years were seen for annual comprehensive care visits at our center. All these patients and their families signed ROI forms and agreed to participate in our quality improvement initiative. We successfully obtained records for 29 of these patients (50% overall return rate). We increased the number of these records archived in the EMR from 5/74 (7%) at baseline on April 1, 2023, to 30 of 74 (40.5%) on October 31, 2023.

Each record we received contained data to integrate into the EMR; however, not all patients underwent the testing required to calculate an FSIQ for entry into the NSBPR. We obtained FSIQ scores from 18 of the 29 school records we received (62% yield). Thus, the percentage of FSIQ scores entered into the NSBPR by our center increased from 5.4% (4/74) at baseline to 29.7% (22/74) at the end of our 6-month quality improvement initiative.

It took most schools less than a week to fax us records (mean, 10.6 d; median, 6 d). The longest time to receive records from a school was 42 days. Five schools (all high schools) responded to a second fax request. Most schools that did not reply to the original fax request did not respond to repeated attempts to obtain records.

On average, our registry coordinator took 14.5 minutes per patient to obtain the ROI, fax record requests to schools, and track receipt of records. It took our medical director 15 minutes per patient to review the records and dictate an addendum to the clinic note.

The workflow we developed at our center resulted in increased record collection, better integration of these records into our EMR, and increased entry of FSIQ scores into the NSBPR. We demonstrated a consistent workflow for each step in the process.

Ethical Considerations

The institutional review board at Upstate Medical University approved an amendment to the NSBPR protocol before the implementation of the quality improvement initiative. This amendment specified that patients enrolled in the NSBPR, which required informed consent, would be offered the opportunity to participate in our quality improvement initiative at their annual comprehensive care visit. Our registry coordinator and medical director followed data quality checks and procedures developed by the NSBPR according to the registry protocol.

RESULTS

Figure 4 shows the P-charts we developed to measure our monthly progression in record collection, that is, the percentage of records received relative to the number requested for each month from April 1 through October 31, 2023. We achieved a 50% overall return rate, obtaining records for 29 out of 57 patients. Our monthly target for record collection was 50%. Using QI Macros software, we calculated a monthly average record collection rate of 49%.

Fig. 4.

P-charts. A P-chart is a statistical quality control tool that monitors the proportion of nonconforming items in a process over time. Our P-charts document the proportion of records received in response to record requests each month. We have included baseline data from the previous 6 months. CL, control limit; LCL, lower control limit; UCL, upper control.

Figure 5 illustrates the demographics of the patients from whom we obtained an FSIQ. Most of the patients (80%) were White. Eight percent identified as Black/African American, and a similar percentage identified as Hispanic or Latino. Nearly two-thirds of patients (64%) were publicly insured. Among the 5- to 11-year-old children, 80% were household or community ambulators, and 60% had shunted hydrocephalus. Among the 12- to 21-year-old adolescents, 50% were household or community ambulators, and 60% had shunted hydrocephalus. The mean FSIQ for the entire group was 82. The 5- to 11-year-old subgroup had a mean FSIQ of 91, whereas the 12- to 21-year-old subgroup had a mean FSIQ of 63. Chi-square analyses did not identify any statistically significant differences in age, receipt of public insurance, shunt status, or ambulatory status between the 29 patients for whom we had records and the 28 patients for whom we did not.

Fig. 5.

Patient demographic and psychoeducational characteristics. Our patient population data are displayed to show the relationship between patient demographics and their psychoeducational data.

Figure 6 illustrates the 504 Plan and IEP classifications that were documented in the records we received. Most patients aged 5–11 years had IEPs that focused on their physical disability. Sixty percent of children had the “Orthopedic Impairment” classification, indicating that school supports and services were primarily focused on their physical disability. Thirty-three percent of children had 504 accommodations that provided assistance from the school nurse for bowel/bladder management and self-care skills. Only 1 student (6.6%) had an “Other Health Impairment” IEP classification that focused on a learning disability. Among patients aged 12–21 years, 40% of IEPs used either the Multiple Disabilities or the Orthopedic Impairment classification. An equal percentage of IEPs for this age group used classifications that focused on cognitive challenges (Other Health Impairment, Learning Disability, Speech-Language Impairment), and 20% had 504 accommodation plans that provided school nurse assistance for bowel/bladder management and self-care skills. This finding suggests that middle schools and high schools recognize the cognitive challenges associated with SB as demands on students’ executive functioning skills increase.

Fig. 6.

IEP/504 plan designations for patients aged 5–11 vs 12–21 years old. This figure displays the percentage of our patient population’s educational plan designations, categorized by age group. A, IEP designation (5–11 y). B, IEP designation (12–21 y)

DISCUSSION

Summary

We found that most schools responded to record requests promptly, within 1 week. Multiple record requests did not improve the yield. We therefore adjusted our workflow to issue only 1 additional request when records are not received within 2 weeks. We suspect the lower number of records received in September may be due to administrative demands at the beginning of the school year. We now take this into account. A surprising number of psychoeducational reports did not include IQ scores. The time required to obtain ROIs is minimal when the workflow is integrated into annual comprehensive care visits. Clerical support staff can manage most of the logistics.

Interpretation

The data collected from our workflow have better equipped our care team to discuss school performance, self-care skills, and social participation. Psychoeducational records also increased our ability to advocate for community resources such as habilitation services and supported employment. We can now provide families with all the documentation needed to apply for these programs, saving them time and effort.

Limitations

Because this was a single-center quality improvement initiative, SB centers with different staffing teams might have difficulty incorporating the additional workload or hiring the necessary staff to complete this project. Our sample size was small and may not accurately reflect the national SB population. Funding for a school district’s support services varies widely by region, city, and other factors, and this variation is reflected in the services/supports provided to our patients. Variance in staffing across school districts may affect the ability to provide records promptly, requiring multiple attempts to obtain them and thereby increasing the workload associated with this initiative. The increase in telemedicine appointments may hinder other centers’ ability to obtain needed ROIs.

CONCLUSIONS

Since implementing the workflow, we are now able to systematically review children’s IEPs and 504 Plans at kindergarten entry, middle school entry, and when they transition to adult health care, ensuring that accommodations for both physical and cognitive disabilities are in place. We are currently planning a quality improvement project to provide families with age-appropriate, task-based learning examples at each of these educational milestones, using an evidence-based occupational therapy approach that accounts for the specific neurocognitive challenges associated with SB and shunted hydrocephalus.¹⁴

We also plan to share the workflow for obtaining psychoeducational records with other registry sites to facilitate the integration of cognitive data into the NSBPR. Ultimately, collecting data on cognitive functioning and educational support across all NSBPR sites will enable us to better understand and improve health outcomes, social participation, and quality of life for individuals with SB.

ACKNOWLEDGMENTS

The authors thank the SUNY Upstate Medical University Quality Scholars Program, especially Andrew W. Osten, MD, for their support in developing this quality improvement initiative.