Abstract
The information gathered from this study can assist occupational therapy practitioners in understanding common intervention strategies for children with myelomeningocele.
Spina bifida is a neural tube defect that occurs in utero when the neural tube (which develops into the brain, spinal cord, and structures around the spinal cord) does not fully close. In the United States, spina bifida occurs in approximately 1 in 2,758 births (Centers for Disease Control and Prevention, 2024). Myelomeningocele is the most severe form of spina bifida in which parts of the spinal cord and meninges protrude from the infant’s back in a fluid-filled sac. Because this protrusion can occur at any point along the spinal column, presentation among children with myelomeningocele (CWM) varies significantly. In addition to motor and sensory impairments that can affect occupational performance, 70% to 90% of CWM experience hydrocephalus (water on the brain) resulting from decreased flow of cerebrospinal fluid (Spina Bifida Association, n.d.). Other common comorbidities include Chiari malformation Type 2, neurogenic bladder, neurogenic bowel, and orthopedic issues, including clubfoot and scoliosis (Gober et al., 2022). These co-occurring conditions require careful medical care (Rocque et al., 2021), and they can result in challenges with activities of daily living, including toileting, functional mobility, and dressing. Additionally, CWM have difficulty with learning, decreased visual perceptual skills, challenges with memory, attention limitations, and difficulty with executive functioning (Lindquist et al., 2022) that can affect their participation in school and work. These physical and mental factors result in evolving occupational performance deficits across the lifespan that require comprehensive multidisciplinary care, including rehabilitation services.
Occupational therapy practitioners serve CWM in various settings, including pediatric hospital-based outpatient clinics. Occupational therapy practitioners in this setting use multiple approaches to address occupational performance deficits for CWM. Many CWM use a wheelchair for mobility, and occupational therapy practitioners often lead the evaluation and training process for these devices (Sawatzky et al., 2012). Toileting is an area of occupation in which many CWM have difficulty because of neurogenic bowel, bladder, or both (Gober et al., 2022). Occupational therapy practitioners can address toileting by providing adaptive equipment, developing toileting routines, and teaching skills to build independence in clean intermittent catheterization (Donlau et al., 2013; Jennings et al., 2020). Occupational therapy practitioners can also address feeding, fine motor development, and executive functioning challenges. The Cognitive Orientation to daily Occupational Performance (CO–OP) approach has been successfully used to help CWM achieve individualized goals (Öhrvall et al., 2020; Peny-Dahlstrand et al., 2023). Although many of these services are provided through in-person interaction, telehealth may also address some skills, including self-management (Dicianno et al., 2016).
Although CWM commonly receive outpatient occupational therapy services, the dosage of those services is unknown. Rehabilitation dosage includes four components: frequency, intensity, time, and type (FITT; American College of Sports Medicine, 2018; Gannotti et al., 2014). Measuring the dosage of rehabilitation services is essential for many reasons, including building evidence for the profession, ensuring replicability of interventions, and understanding why patient outcomes vary. Occupational therapy intervention dosages have been investigated in detail for children with cerebral palsy (CP), particularly for constraint-induced movement therapy (Hoare et al., 2019). Other fields, such as physical therapy, have also made strides in defining dosage for various patient populations (Bailes et al., 2021; Palisano et al., 2012).
Dosage can be more challenging to capture in the context of usual clinical care than in research (i.e., randomized controlled trials). The FITT Epic Flowsheet, which was developed at Cincinnati Children’s Hospital Medical Center and then implemented at Nationwide Children’s Hospital through a quality improvement initiative (Bailes et al., 2019; Tanner et al., 2024), is used to measure the dosage of physical and occupational therapy services delivered as usual care. The flowsheet, which is further described in the “Dosage Variables” section, provides a structure for progress notes that includes sections for each of the elements of dosage: frequency, intensity, time, and type. Checkboxes are provided for common intervention types and frequencies, with the option for practitioners to add comments and free-text responses as needed. Flowsheet data are collected at each outpatient occupational therapy visit and include each dosage element, as well as treatment modalities such as telehealth or cotreatment. Use of the FITT Epic Flowsheet can help determine whether evidence-based interventions, such as CO–OP, are being used to the extent one would expect in usual care. Additionally, the FITT Epic Flowsheet can help to track trends in intervention, such as use of telehealth services, over time. In this study, we used a retrospective record review to describe the dosage of outpatient therapy treatment services provided to CWM at one institution, providing a basis for future research on comparative effectiveness of interventions and potential prospective clinical trials for this population.
Method
Participants
The study took place at Nationwide Children’s Hospital, a large urban–suburban pediatric hospital with eight outpatient occupational therapy clinics. All participants with a primary diagnosis of myelomeningocele or spina bifida with hydrocephalus who were seen at any clinic location for an outpatient occupational therapy visit in which the FITT Epic Flowsheet (Bailes et al., 2019; Tanner et al., 2024) was used were included for the 2-yr study period (December 1, 2021–November 30, 2023). Participants were identified using automated monthly reports that contained all data entered into the FITT Epic Flowsheet for clinical purposes. The flowsheet captures only treatment visits (not evaluation), but it can be used for discharge summary purposes as well. The third author (Kelly Tanner) combined monthly data for the study period into one spreadsheet. Then, Tanner applied filters to the “primary diagnosis” column to capture all patients who were identified as having myelomeningocele or spina bifida. In-person and telehealth visits and cotreatments with another discipline (i.e., speech-language pathology or physical therapy) were included.
Procedures
The Nationwide Children’s Hospital Institutional Review Board reviewed and approved the protocol for this study. All study procedures were conducted in accordance with the protocol to ensure protection of human participants. All treatment provided was recorded as part of usual care using the Epic FITT Flowsheet. Treating therapists initially received training in the use of the FITT Epic Flowsheet upon its adoption in 2021; all therapists hired after its implementation are trained as part of their new hire orientation (Tanner et al., 2024). All therapists have access to the FITT Epic Flowsheet Manual, which provides definitions for each field. Reliability is maintained through quarterly review of video case studies with group consensus discussion. Billing data were entered into the electronic medical record using Current Procedural Terminology ® (CPT ®) codes at each visit. 1 All data were extracted from the Epic electronic medical record (Epic Systems Corporation, n.d.) using a combination of manual chart review and automated monthly reports, as described next in the “Measures” section.
Measures
Demographic Variables
The first author, Elizabeth Mance, extracted the demographic variables using manual chart review. The second and third authors (Kristen Martin and Kelly Tanner) reviewed the data as well, and the study team reviewed and discussed all questions and discrepancies. The demographic variables were participant age, gender, ethnicity, race, insurance type, social determinants of health (i.e., caregiver-reported difficulties with finances or obtaining housing, transportation, or food), and myelomeningocele functional classification group (thoracic; sacral; or low, mid-, or high lumbar). These variables were included because they could affect the dosage of therapy provided.
Dosage Variables
Dosage variables in occupational therapy treatment documentation were extracted using automated monthly reports on the FITT Epic Flowsheet. These variables included frequency (total number of therapy sessions), intensity (as determined using the Child Effort Rating Scale [CERS]; Bailes et al., 2019; Horn et al., 2015), time (occupational therapy timed billing unit charges and length of visit, which were entered into a separate flowsheet), and type (interventions and services carried out). Because of the volume of potential variables—the FITT Epic Flowsheet can be used to document treatment of children presenting to occupational therapy for any reason—the study team selected the most relevant intervention types for the population on the basis of their clinical expertise. For example, interventions in the sensory perceptual category (including sensory desensitization, multisensory interventions, and Ayres Sensory Integration®) were not included in the analysis because they are unlikely to be relevant to CWM.
CPT codes for sessions were extracted via data request for billing information for the specific sessions included in the study. These codes were extracted for two reasons: (1) to illustrate the comparatively lower level of detail that billing data can offer in contrast to the FITT Epic Flowsheet and (2) to provide another perspective on the time spent in a given type of activity. Note that CPT codes provide broad categories of treatment for billing purposes. Multiple individual occupational therapy interventions can fall under one CPT code; therefore, using the specific interventions extracted from FITT in addition to the CPT codes used provided unique information for the purposes of this study.
CERS
The CERS (Bailes et al., 2019; Horn et al., 2015) quantifies intensity data using a numerical scale ranging from 0 to 6 (0 = absence of effort, 1 = minimal effort, 2 = below average effort, 3 = average effort, 4 = above average effort, 5 = very good effort, 6 = superior effort). These scores are intended to fall along a normal bell curve, with the majority of scores falling between 2 and 4, which represents the average range. CERS is a standard part of documentation with the FITT Epic Flowsheet, and it was selected as a measure of intensity to capture the child’s effort to meet therapy goals during each session (Bailes et al., 2019). The treating therapist rated and documented the child’s effort required throughout each session.
Analysis
The data were analyzed using Microsoft Excel. Descriptive statistics included means, standard deviations, medians, interquartile ranges (IQRs) for interval variables, and frequencies and percentages for ordinal variables. Median and IQR were used for variables in which significant outliers were present.
Results
Twenty participants with a median age of 4.85 yr (IQR = 3.75; 50% male) received 258 therapy sessions throughout the study period (Table 1). Most were White (80%), identified as non-Hispanic or Latino (90%), and held commercial insurance (50%). Participants predominantly reported no challenges related to finances (60%), transportation (75%), food security (65%), or housing stability (65%). The most common myelomeningocele functional classification was low lumbar (45%). Nine of the participants also received outpatient physical therapy services at the same institution during the study period.
Demographic Characteristics of Children With Myelomeningocele (N = 20)
Note. IQR = interquartile ratio.
Frequency
The median number of sessions per participant during the 2-yr study period (i.e., frequency) was 5 (IQR = 9.75; Figure 1). Of the 258 total therapy sessions provided, the intended model of care for most was either weekly (108 sessions; 41.9%) or every other week (127 sessions; 49.2%). The remaining 23 sessions (8.9%) were consultative, monthly, or “other” (e.g., discharge; in one instance, the therapist selected “5x per week,” but this was likely an error).
Number of occupational therapy visits per participant within the study period (December 1, 2021–November 30, 2023).
Intensity
The CERS score (i.e., intensity) for most sessions was reported as average, with only scores of 2 to 4 reported (258 sessions; Mdn = 5.0, IQR = 9.75). Eight sessions (3.1%) were rated as 2 (below average effort), 239 (92.6%) as 3 (average effort), and 11 (4.3%) as 4 (above average effort).
Time and Type
The mean length of each session was 51.87 min (SD = 7.82; range = 5–68).
FITT Epic Flowsheet data indicated the use of multiple types of intervention; Table 2 presents the percentage of visits in which each of these interventions was used. Multiple interventions can be selected for a given treatment session; therefore, percentages do not add up to 100. The treating therapists categorized a subset of visits (20.90%) as feeding visits, presented separately in Table 2 because of the expected differences in interventions for this visit type. The most common intervention types for general visits (i.e., nonfeeding) were strengthening (functional; 85.78% of visits), fine motor–dexterity (81.86% of visits), and repetitive task-specific practice (59.80% of visits). Most general visits used each of these interventions. Among feeding visits, the most common intervention types (each used in more than half of the visits) were the task-specific practice of daily life activities (98.15% of visits), oral motor coordination (96.30% of visits), strengthening (functional; 68.52% of visits), and modeling (i.e., use of demonstration, video, or both followed by discussion, rehearsal, or both; 66.67% of visits).
Percentage of Intervention Type by Visit Category
Note. Multiple interventions can be selected for use in a given treatment session; therefore, percentages do not add up to 100. CO–OP = Cognitive Orientation to daily Occupational Performance.
Time and type of occupational therapy sessions are further delineated using CPT billing codes (Table 3). Therapeutic activities was used for the majority of sessions (62.4%), with self-care/home management training used for about one-third of sessions (34.1%). Although used less frequently (1.2% of sessions), the neuromuscular reeducation code had the longest duration (55.33 min) when it was used.
Current Procedural Terminology Codes Used Across All Visits
aWheelchair management was only selected one time; therefore, no SD is reported.
Discussion
The results of this study provide the first comprehensive description of the dose of outpatient occupational therapy services delivered as usual care to CWM in 258 sessions over 2 yr at a large urban–suburban pediatric hospital. Next, we discuss each dosing parameter in detail.
Frequency
Participants received a median of five outpatient occupational therapy sessions over 2 yr (Figure 1). Because dosage information is not available for CWM, this frequency may be compared with that for children with CP, another neurodevelopmental disorder. In one study of children with CP, most participants received two to four in-clinic occupational therapy sessions per month (Palisano et al., 2012). This frequency is much higher than that observed in our study for various reasons. First, our study sample included children with a median age of 4.85 yr. As CWM approach school age, they may receive more occupational therapy in the school setting and only attend outpatient therapy to address targeted goals. The participants in this study represent therapy received in only one institution; they may also have been receiving therapy elsewhere in the community. Finally, intensive therapies targeting children with CP exceed those targeting CWM. For example, children with unilateral CP may receive constraint-induced movement therapy, which would increase their frequency of therapy significantly over time.
Intensity
The mean intensity exhibited by individuals in the study sample centered at 2 to 4 on the CERS. These intensity scores followed the condensed bell curve distribution expected with this rating scale. However, we expected lower intensity scores because of the low motivation and learned helplessness experienced by the population with myelomeningocele (Bakanienė et al., 2018). CWM often lag behind their peers in initiation and self-management (Logan et al., 2020). Studies on this topic frequently target those at transition ages that align with school and prevocational training (14–21 yr). Given our sample’s mean age of 4.85 yr, the types of intervention used may have required less independent initiation to meet that average effort threshold. Additionally, CERS is a relatively subjective measure of intensity. Similar studies on the dosage of therapy use different measures of intensity, such as heart rate, which provide more objective results but did not apply to this study’s population.
Time
The average time per session observed in this study (51.87 min) reflects the institution’s outpatient scheduling model, in which outpatients are typically scheduled in 60-min slots. Although children with CP receive a mean of 137.6 min of clinic-based occupational therapy per month, this increased amount of therapy reflects their increased frequency of treatment (Palisano et al., 2012). The timing of these observed sessions likely reflects administrative policies, indicating that the treatment sessions generally adhered to the allocated time.
Type
The study sample’s treatment-type results include a few unexpected trends warranting discussion. On the basis of the current occupational therapy literature, the sample included more feeding interventions than expected. Chiari malformation Type 2 is associated with difficulty swallowing and possible feeding difficulty (Kuhn et al., 2024). Feeding interventions can address several underlying deficits, including swallowing, oral motor coordination, sensory aversion, and behavioral rigidity, which makes confident inferences about the possible reasons for this increased incidence in the sample difficult without deeper examination. One intervention that we expected to have a high frequency was the CO–OP approach, which has been shown to be successful in helping CWM achieve individualized goals (Öhrvall et al., 2020; Peny-Dahlstrand et al., 2023). However, fewer than 12% of visits included the use of CO–OP. One reason for this could be that CO–OP requires participating in formal training to implement with fidelity. This need for formal training may have limited the use of CO–OP in the study sample if the therapists providing treatment had not completed the CO–OP course. Another consideration at this institution is the role of neuropsychology. Many CMW in the local area are also followed in the hospital’s multidisciplinary Myelomeningocele Clinic, where they see several different specialties. CMW receive regular neuropsychology testing. When cognitive or learning challenges are identified, outpatient therapy may be initiated. CO–OP is an intervention also used in neuropsychology; therefore, CMW may be receiving this intervention outside of occupational therapy treatment.
Additionally, the study sample included fewer interventions connected to wheeled mobility than expected given the incidence of wheelchair use among CMW. Many CWM use a wheelchair during childhood, and approximately 50% of CMW will transition to using a wheelchair during adolescence or early adulthood (Sansom & Ulrich, 2018). One explanation may be that assessing and prescribing manual wheelchairs often occurs in a team setting because of the need for a therapist, physician, and assistive technology professional or equipment provider. As such, wheelchair needs are frequently addressed in specialty clinics and programs that allow this multidisciplinary collaboration rather than in individual occupational therapy treatment sessions.
Time and Type
One metric for measuring the time and treatment type provided in this study was the CPT codes billed for each occupational therapy session. These codes contain both time, based on the number of minutes and corresponding units selected, and type, because each code has a specific definition meant to encapsulate the intervention provided that warranted selecting that code. The predominant code chosen was therapeutic activity (62.4% of sessions). Although these codes provide some information about the focus of the session, the FITT Epic Flowsheets provide much richer detail regarding the type of intervention used. In conjunction, these data sources provide the most detail on time and type. Connecting FITT interventions and CPT codes also allows this study’s findings to have meaning across institutions: Although the flowsheet is not universal, occupational therapy CPT codes are used across all hospital-based occupational therapy systems. Within sessions, the therapeutic activity code was used for a mean of 42.6 min. Because therapeutic activities are defined as “use of dynamic activities to improve functional performance,” a higher prevalence of this code would be expected to address participation across different areas of activities of daily living and instrumental activities of daily living (American Occupational Therapy Association, 2025). The second most predominant code selected was self-care management training, included in 34.1% of sessions, for a mean of 26.98 min. Conversely, wheelchair management was selected least often, in only 0.4% of sessions (i.e., one session). This finding aligns with the interventions selected in the FITT flowsheet (Table 2).
This study is an initial step toward describing usual-care occupational therapy services for CWM. Determining the effectiveness of interventions was outside of the scope of this project; therefore, clinical outcomes of therapy were not measured. The next steps for this work may include describing doses in other therapy settings, such as early intervention, school, and community-based services. In addition, future work may involve linking the occupational therapy dosage to patient outcomes, perhaps using an outcome measure such as goal attainment scaling.
Limitations
This study has several limitations. First, the data presented represent usual-care occupational therapy at only one institution; local referral patterns could play a role in the dosage of treatment provided. Second, the sample size is relatively small and may not allow generalization of results. Third, other diagnoses (e.g., fine motor delay) could have been listed as the patient’s primary diagnosis, and some CWM may therefore have been excluded from our sample. Finally, children with other spinal malformation diagnoses, such as caudal regression syndrome or sacral agenesis, were not included in the study because they did not have a formal myelomeningocele diagnosis. These individuals often have similar occupational performance deficits and receive medical care from the same specialists as CWM. Future studies may include people with a wider variety of related diagnoses, which may increase the sample size and provide additional insights into relevant occupational therapy interventions and dosages.
Implications for Occupational Therapy Practice
Although the aim of this study was primarily descriptive in nature, its results can be considered in the context of both clinical care and research. This study has the following implications for occupational therapy practice: ▪ Occupational therapy practitioners should consider quantifying the dose of therapy they are providing as usual care for CWM to support further study on the best model of care for this patient population. ▪ Practitioners should consider how their clinical documentation could be better leveraged to reflect frequency, intensity, time, and type to contribute to the breadth of occupational therapy dosage knowledge.
Conclusion
This study aimed to describe the dose of usual-care outpatient occupational therapy provided to CWM at one institution using data from the electronic medical record. The objective was met, and practitioners and researchers may use the information presented to develop future prospective trials of occupational therapy for CWM. Description of usual-care therapy dosage can help move the field forward by characterizing current care and well as developing novel treatment packages that can help individuals reach their functional goals.
Supplemental Material
Supplementary material for Describing the Dose of Outpatient Occupational Therapy Services for Children With Myelomeningocele
Supplementary material, sj-pdf-1-aot-10.5014_ajot.2025.051123.pdf for Describing the Dose of Outpatient Occupational Therapy Services for Children With Myelomeningocele by Elizabeth Mance, Kristen Martin and Kelly Tanner in The American Journal of Occupational Therapy
Footnotes
1 CPT ® is a registered trademark of the American Medical Association. All rights reserved.
References
Supplementary Material
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