Abstract
This study shows improvement in upper and lower extremity dressing and PEDI-CAT daily activities score among children with cerebral palsy, which suggests that inpatient occupational therapy post-SDR may provide benefits.
Cerebral palsy (CP) has been identified as the most common disorder causing childhood disability (Korzeniewski et al., 2018). CP includes a group of permanent disorders that affects the development of movement and muscle tone or posture, causing limitation of activities because of nonprogressive disturbances occurring in the developing brain of the fetus or infant (Rosenbaum et al., 2007). CP is classified into spastic, athetoid, ataxic, hypotonic, or mixed according to the main type of movement disorder (Kinghorn, 1992). Among children with CP, spastic CP is the most common type.
Selective dorsal rhizotomy (SDR) is a surgical procedure to decrease lower extremity spasticity among children diagnosed with spastic CP. It is an elective procedure that is performed at hospitals in the United States, with the selection criteria and surgical technique varying by hospital. SDR has been described in numerous articles over the years. SDR involves the selective sectioning of the lumbosacral posterior nerve rootlets and ablating the nerve rootlets that produce abnormal responses (Berman et al., 1990; Peacock & Arens, 1982).
Specialized occupational therapy services can be a component of recovery after SDR. Several researchers have reported improvement in self-care after SDR; however, these positive changes have only been described as a consequence of the surgery, with no detailed descriptions of the components of postoperative occupational therapy (Ailon et al., 2015; Dudley et al., 2013; Fasano et al., 1978; Fraioli & Guidetti, 1977). To our knowledge, little to no evidence exists in the literature regarding the effects of occupational therapy after SDR and whether these effects are affected by age at SDR, Gross Motor Function Classification System (GMFCS) level (Palisano et al., 2007; Wood & Rosenbaum, 2000), and the number of occupational therapy dressing sessions.
A review of more than 80 research articles by the primary author (Heather Forst) found that there are significant variations in the frequency and duration of occupational therapy services after SDR. In addition, not all children in these studies received occupational therapy services as part of their plan of care after SDR. Of the 80 articles examined, only 6 mentioned occupational therapy as part of the patient’s rehabilitation program post-SDR. In these 6 studies, the frequency and duration of occupational therapy services varied significantly: once daily occupational therapy for 4 to 6 wk (Buckon et al., 1996), 1 hr per day for 6 wk (Mittal et al., 2002), one to three sessions during the course of a 10- to 14-day inpatient stay (Kinghorn, 1992), 1 hr per day for 6 days per week for 6 wk (Lewin et al., 2009), 3 to 5 hr per week for 4 wk (Dudgeon et al., 1994), and 4 to 6 wk of inpatient occupational therapy (Nishida et al., 1995).
The majority of the studies mentioned earlier had follow-up assessments at 6 mo and 1 yr. One study (Mittal et al., 2002) followed patients until 5 yr post-SDR; in another study (Kinghorn, 1992), participants were reassessed at 6 wk, 3 mo, 6 mo, and 1 yr after SDR. However, no study has examined the changes made immediately after intensive inpatient rehabilitation. In addition, no study has analyzed the effects of dosing—in specific, the effect of number of occupational therapy dressing sessions on outcomes.
The purpose of this study was to quantitatively evaluate self-care changes made immediately after intensive inpatient rehabilitation and at 1-yr follow-up and to see whether these changes were affected by age at SDR, GMFCS Levels I to III, and the number of occupational therapy dressing sessions (dosing). This information could help to define the role of occupational therapy after SDR in the management of children diagnosed with spastic CP.
Method
Study Design and Participants
After institutional review board approval by the University of Minnesota, a retrospective chart review was conducted. Charts of children admitted from January 2014 to December 2018 at a tertiary Commission on Accreditation of Rehabilitation Facilities–accredited pediatric inpatient rehabilitation facility in St. Paul, MN, were examined. Patients ages 4 to 17 yr diagnosed with spastic CP and functioning at GMFCS Levels I to III pre-SDR were included if they completed a preoperative outpatient occupational therapy evaluation within 6 mo before SDR, had a preoperative spasticity evaluation with a physical therapist within 1 yr before surgery, and had postoperative outcome measures in the electronic medical record. Children whose parents or caregivers elected to opt out of research, children rated as being at GMFCS Levels IV and V, children with incomplete medical records (data were not completed both pre-SDR and post-SDR), and children with a shortened inpatient rehabilitation stay (≤2 wk) were excluded.
Procedure
All SDR surgical interventions were performed using a standardized technique (Berman et al., 1990; Peacock & Arens, 1982). The surgery was combined with intensified goal-directed inpatient occupational therapy that began on Postoperative Day 5. After SDR, occupational therapy focused on a developmental progression of activities to strengthen the core, improve sitting balance, and enhance transitional movements. If children demonstrated stable sitting balance in short sitting, side sitting, or tailor sitting, the occupational therapy practitioner typically initiated activities of daily living (ADL) sessions (i.e., dressing) the 3rd wk postsurgery. For those children who assisted with upper and lower body dressing before surgery, these sessions focused on relearning upper and lower body dressing now that muscle tone and spasticity had been reduced. Those children who never participated or participated minimally in dressing at baseline were taught strategies and given positioning recommendations for completing dressing now that maintaining sitting balance was easier, and they had increased ease in positioning the lower body.
After SDR, all children received 3 to 6 wk of occupational therapy. Sessions were scheduled 2 times per day Monday through Friday for 30 min and one 30-min session on Saturday. If children demonstrated good sitting balance by the 3rd wk of their inpatient rehabilitation stay, one of the occupational therapy treatment sessions per day was transitioned to a morning bedside session to work on upper and lower body dressing.
ADL sessions were completed in the child’s hospital room where they worked on dressing in different locations and positions, depending on their trunk stability and sitting balance. Dressing sessions were performed in their hospital bed, in side sitting or tailor sitting on a floor mat, or in their wheelchair. Throughout the course of the ADL treatment sessions, children tried multiple different locations and positions to determine which would be the safest and allow for the highest degree of independence with dressing.
Morning ADL sessions were completed by a registered and licensed occupational therapy practitioner or certified occupational therapy assistant and were carried out until the children were back to their baseline level of independence with upper and lower body dressing or better. ADL sessions were discontinued on the basis of consensus of each child’s primary treating occupational therapy team and with the agreement of the parents or caregivers.
Pre- and postsurgical testing for grip and pinch strength was completed by a standardized technique (Mathiowetz et al., 1985). Fine motor dexterity was also assessed in a standardized fashion (Jongbloed- Pereboom et al., 2013). After discharge from inpatient therapy, all children had outpatient therapy for about 1 yr at varying intensity.
Data Collection
Demographic, medical and functional assessment scores, and other relevant information were collected directly from the medical records. Demographic data collected included age at SDR, gender, functional status, and underlying diagnosis. Data collected at baseline, at discharge from the inpatient rehabilitation unit, and at 12 mo after SDR are presented in this article.
Functional Assessments
Functional outcomes were assessed with standardized instruments, including the Functional Independence Measure for Children® (WeeFIM; Sperle et al., 1997), the Pediatric Evaluation of Disability Inventory Computer Adaptive Test (PEDI–CAT; Haley et al., 2011), and the GMFCS. Experienced occupational therapy practitioners administered the WeeFIM and PEDI– CAT using a consistent technique at each child’s assessment. The GMFCS rating was taken from physical therapy documentation.
The WeeFIM is considered a standard assessment tool for pediatric rehabilitation programs. It is focused on functional assessment and measures how well a patient performs the most basic ADLs. For each of the 18 functions, a child is assigned a number from 1 to 7. A score of 1 means the child is completely dependent, and a score of 7 means the child can perform the task or activity completely independently. In this study, particular attention was given to the self-care (upper and lower body dressing and grooming) and transfer (tub–shower) domains. All inpatient rehabilitation occupational therapy practitioners at the facility where this study was completed were WeeFIM certified. Therapists must receive a score of ≥80% during certification testing to maintain their WeeFIM credentialing.
The PEDI–CAT was designed as a computer adaptive test to measure function in four domains: daily activities, mobility, social–cognitive, and responsibility. It provides information on the effectiveness and efficiency of rehabilitative care (Haley et al., 2011). Because it is a computer adaptive test, there is no interrater reliability for administration.
A five-level classification from the GMFCS (Palisano et al., 2007; Wood & Rosenbaum, 2000) was used to describe the gross motor function of children and youth with CP. It was used to examine their self-initiated movement, and it placed emphasis on sitting, walking, and wheeled mobility. Distinctions between levels were based on the child’s functional abilities, need for assistive technology (including hand-held mobility devices [e.g., walkers, crutches, or canes] or wheeled mobility), and (to a lesser extent) quality of movement.
Statistical Analyses
All statistical analysis were performed with SAS (Version 9.4). Demographics and surgery characteristics were summarized with descriptive statistics (means and standard deviations for continuous variables and counts and proportions for categorical variables). All study outcome distributions were assessed for normality and outliers with QQ plots and histograms. The paired-sample t tests were used to assess pre- and postoperative functional changes, with each child serving as their own control. Because of the large number of statistical tests run, increasing the risk of a Type I error (false positives), a Bonferroni correction to critical p value was applied. Thus, p < .002 was considered statistically significant.
Multivariate linear regression models were performed for the outcomes that had statistically significant changes from baseline to discharge from inpatient rehabilitation. These outcomes include PEDI–CAT daily activities score, WeeFIM lower body dressing, and WeeFIM upper body dressing. These three outcomes were analyzed in relation to potentially important predictors, including age at SDR, GMFCS Levels I to III, and the number of occupational therapy dressing sessions.
The PEDI–CAT daily activities score model included two predictors: GMFCS level (I and II vs. III) and age at SDR (4–7 yr vs. 9–17 yr). GMFCS Levels I and II were grouped together because of the small sample size at GMFCS Level I. Only two predictors were included in this model because of a smaller sample size.
For the WeeFIM models, the initial plan was to include the following predictors: GMFCS level (I and II vs. III), number of occupational therapy dressing sessions (split at the median: 0–4 vs. 5–14), and age (4–7 yr vs. 9–17 yr). However, after assessing for model fit, we found that GMFCS levels and number of occupational therapy dressing sessions were highly associated, χ2(1) = 8.51, p = .004. To solve this issue, we created a new combined variable for GMFCS level + occupational therapy dressing sessions. This new combined variable has four categories: (1) GMFCS Levels I and II, 0 to 4 occupational therapy dressing sessions; (2) GMFCS Levels I and II, 5 to 14 occupational therapy dressing sessions; (3) GMFCS Level III, 0 to 4 occupational therapy dressing sessions; and (4) GMFCS Level III, 5 to 14 occupational therapy dressing sessions. The final models for WeeFIM thus included the following predictors: age group and GMFCS levels + occupational therapy dressing sessions combined variable. Model fit was reevaluated by examining the model residual plots for the final models, and residual plots indicated that the model was well fitted. For the regression modeling, ps < .05 were considered statistically significant.
Results
A total of 100 children diagnosed with spastic CP had SDR from 2014 to 2018, and 73 met inclusion criteria (Table 1). Ten children and their families opted out of research, so they were excluded. An additional 17 children were excluded for the following reasons: 7 children did not have assessments completed at the time of discharge from inpatient rehabilitation, 4 children did not have presurgical assessments, and 6 children had a 2-wk stay at the inpatient rehabilitation unit. The mean age at the time of SDR was 7 yr (range = 4–17 yr). On average, patients spent 5 wk (range = 3–6 wk) at the inpatient rehabilitation unit and had on average 51 (range = 29–81) occupational therapy practitioner inpatient visits after SDR. At baseline, 3 children were classified as GMFCS Level I, 40 as Level II, and 30 as Level III.
Demographic Characteristics of the Children Diagnosed With Spastic Cerebral Palsy Who Received SDR (N = 73)
Note. GMFCS = Gross Motor Function Classification System; SDR = selective dorsal rhizotomy.
Table 2 compares the pre-SDR WeeFIM and PEDI–CAT self-care scores with the scores at discharge from the inpatient rehabilitation unit. Compared with preoperative values, WeeFIM upper and lower body and PEDI–CAT daily activities scores significantly improved at discharge from the inpatient rehabilitation unit (p = .0006). However, no significant improvement was found among pre- and postoperative WeeFIM grooming and tub– shower transfer scores, fine motor dexterity, and grip and pinch strength. Even stratifying by age group (4–7 yr, 8–17 yr), no significant improvement was found between pre- and postoperative scores between the age groups.
Changes in Self-Care Outcomes From Baseline to Discharge for the Inpatient Rehabilitation Unit
Note. Values in bold indicate statistical significance. PEDI–CAT = Pediatric Evaluation of Disability Inventory Computer Adaptive Test; WeeFIM = Functional Independence Measure for Children®.
Table 3 compares the pre-SDR WeeFIM self-care scores with the scores at the 1-yr follow-up period. At 1-yr follow-up, the improvement noted for WeeFIM lower body dressing at discharge persisted (p < .001). However, no significant improvement was found at the 1-yr follow-up period for WeeFIM upper body dressing, grooming, and tub–shower transfer domains. Too few patients were present at the 1-yr follow-up to perform statistical analysis for the PEDI–CAT functional assessments.
Changes in Self-Care Outcomes From Baseline to 1-Year Follow-Up
Note. Values in bold indicate statistical significance. WeeFIM = Functional Independence Measure for Children®.
The p values represent baseline to 1-yr follow-up.
Table 4 presents results from the multivariate linear regression models. Three separate multivariate regression models (presented next) were performed to understand how age at SDR, GMFCS Levels I to III, and the number of occupational therapy dressing sessions were related to the improvements found in WeeFIM upper and lower body dressing and PEDI– CAT daily activities from baseline to discharge from the inpatient rehabilitation unit.
Multivariate Linear Regression Results
Note. Values in bold indicate statistical significance. GMFCS = Gross Motor Function Classification System; PEDI–CAT = Pediatric Evaluation of Disability Inventory Computer Adaptive Test; ref. = reference group; WeeFIM = Functional Independence Measure for Children®.
p values are from multivariate linear regression models and represent either a Type III overall p value for the predictor as a whole (for predictors with >2 categories) or a significant difference between the category and the reference group.
p < .05, statistically significant adjusted mean change from baseline to discharge within subgroup.
WeeFIM Lower Body Model
After adjusting for the other covariates in the model, the change in WeeFIM lower body dressing was not significantly different by age group; however, it was significantly different by GMFCS level and occupational therapy dressing sessions (p = .0169). The group with GMFCS Levels I and II who completed 0 to 4 occupational therapy dressing sessions had no improvement in their WeeFIM lower body dressing score from baseline to discharge (M = −0.02, SD = 0.25, p = .9282), whereas all three other groups had statistically significant improvements.
WeeFIM Upper Body Model
The change in WeeFIM upper body dressing scores from baseline to discharge did not significantly differ by age group or GMFCS level and occupational therapy dressing sessions.
PEDI–CAT Daily Activities Model
The change in PEDI–CAT daily activities score from baseline to discharge did not significantly differ by age or GMFCS level.
Discussion
This is the first study to present results of functional outcomes in WeeFIM and PEDI–CAT scores and to analyze the effects of dosing on outcomes among children who underwent SDR combined with intensified goal-directed occupational therapy. This study also analyzed the effects of age at SDR and GMFCS Levels I to III on outcomes.
SDR followed by intensive goal-directed occupational therapy is important in the management of patients diagnosed with spastic CP. This finding was seen in our study, in which WeeFIM upper and lower body dressing and PEDI–CAT daily activities scores significantly improved after an average of 5 wk of intensified goal-directed inpatient occupational therapy after SDR. A few of the previously mentioned studies had methodological flaws, including the use of outcome measures that were not validated for measuring improvements in ADL. However, there have been four published reports that used the PEDI–CAT and several studies that used the WeeFIM as the primary outcome measure for self-care skills. None of the studies published to date examined changes in WeeFIM self-care at the end of an inpatient rehabilitation stay. This study’s results demonstrate that WeeFIM upper and lower body dressing significantly improved at the end of an average 5-wk inpatient rehabilitation stay. In addition, the improvement in WeeFIM lower body dressing persisted through the 1-yr follow-up period. In contrast to previous studies (Kinghorn, 1992; Loewen et al., 1998), the children in this cohort did not demonstrate statistically significant gains in performance of WeeFIM upper body dressing, grooming, and tub–shower transfer at the 1-yr follow-up.
Smaller but statistically significant improvements in PEDI–CAT scaled scores on ADLs were found from baseline to inpatient rehabilitation discharge in this study. Statistical analyses of the PEDI–CAT functional assessments at the 1-yr follow-up were not completed because of a smaller sample size at the 1-yr mark. However, improvement in PEDI–CAT scaled scores on ADLs at 1 yr after SDR have been well documented. Van Schie et al. (2005) reported on outcomes for 9 children evaluated 1 day before SDR and at 6- and 12-mo postsurgery using the PEDI–CAT Functional Skills and Caregiver Assistance scales for the self-care domain. They noted that mean scaled scores on both the Functional Skills scale and the Caregiver Assistance scale improved significantly 1 yr after surgery when compared with baseline skills. In addition, Mittal et al. (2002) followed a cohort of patients who were evaluated preoperatively, at 6- and 12-mo postsurgery, and at yearly intervals until 5-yr postsurgery. In that study, the PEDI was completed via structured interview with the child’s parents in conjunction with clinical observation of the child by a therapist. Mittal et al. (2002) found that postoperatively, the PEDI– CAT raw, normative, and scaled scores for the Functional Skills scale of the self-care domain significantly improved compared with baseline skills pre-SDR.
As previously reported (Josenby et al., 2015), age did not influence the significant changes that were noted in the WeeFIM and PEDI–CAT functional assessment scaled scores. In addition, preoperative GMFCS levels and postoperative inpatient occupational therapy dosing did not influence upper extremity function. Whereas children at GMFCS Levels I and II who completed 0 to 4 occupational therapy dressing sessions had no improvement in their lower extremity dressing independence, those at GMFCS Levels I and II who completed 5 to 14 occupational therapy dressing sessions, those at GMFCS Level III who completed 0 to 4 dressing sessions, and those at GMFCS Level III who completed 5 to 14 dressing sessions all had improvements in their lower extremity dressing skills. This finding indicates that baseline GMFCS levels and dosing affect lower extremity dressing after SDR and intensive inpatient occupational therapy. However, baseline GMFCS levels did not appear to affect PEDI–CAT ADL changes.
Limitations
This study has several limitations. It is a retrospective study, and the results are specific to this setting with SDR and therapy as performed here. Therefore, caution should be exercised in generalizing these results. No information was collected about any potential pre-SDR occupational therapy services. In addition, the lack of standardized therapy after discharge from the inpatient rehabilitation unit may be considered another limitation. As noted earlier, after discharge from inpatient therapy, the children had outpatient therapy for about 1 yr at varying intensities for varied reasons, including the specific needs of each child and family availability. Despite these limitations, this study is the first to evaluate short- and long-term functional outcomes in WeeFIM and PEDI–CAT scores and to analyze the effects of dosing on outcomes among children who underwent SDR combined with postoperative intensive goal-directed occupational therapy.
Implications for Occupational Therapy
SDR is often pursued for the purpose of improving gait, decreasing the frequency of falls, or decreasing the effort needed for functional mobility. This study shows the benefits of and role for skilled occupational therapy after SDR. The change in WeeFIM scores for upper or lower body dressing that were seen in this study can mean a significant decrease in caregiver burden for these tasks.
Conclusion
This study presents one of the largest sets of patients showing improvement in upper and lower extremity function and ADLs at inpatient rehabilitation discharge. It also demonstrates the effects of age at SDR, preoperative GMFCS levels, and occupational therapy dosing on outcomes. Prospective studies are warranted to determine the specific dose of occupational therapy that yields the most benefit at each GMFCS level.
Footnotes
Acknowledgments
This study was funded by Gillette Children’s Foundation. We thank Lydia Houle for her assistance with data extraction and building the study database. We also thank Meghan Munger for her assistance with the study database and Candice Johnson for her support and feedback on this article.
