Development and validation of a stakeholder-driven, self-contained electronic informed consent platform for trio-based genomic research studies.

Increasingly long and complex informed consents have yielded studies demonstrating comparatively low participant comprehension and satisfaction with traditional face-to-face approaches. In parallel, interest in electronic consents for clinical and research genomics has steadily increased, yet limited data are available for trio-based genomic discovery studies. We describe the design, development, implementation, and validation of an electronic iConsent application for trio-based genomic research deployed to support genomic studies of cerebral palsy. iConsent development incorporated stakeholder perspectives including researchers, patient advocates, institutional review board members, and genomic data-sharing considerations. The iConsent platform integrated principles derived from prior electronic consenting research and elements of multimedia learning theory. Participant comprehension was assessed in an interactive teachback format. The iConsent application achieved nine of ten proposed desiderata for effective patient-focused electronic consenting for genomic research. Overall, participants demonstrated high comprehension and retention of key human subjects' considerations. Enrollees reported high levels of satisfaction with the iConsent, and we found that participant comprehension , iConsent clarity , privacy protections , and study goal explanations were associated with overall satisfaction . Although opportunities exist to optimize iConsent, we show that such an approach is feasible, can satisfy multiple stakeholder requirements, and can realize high participant satisfaction and comprehension while increasing study reach.

The impact of hamstring lengthening on stance knee flexion at skeletal maturity in ambulatory cerebral palsy.

This study reports the long-term outcomes of hamstring lengthening to treat flexed knee gait in children with ambulatory cerebral palsy (CP) after skeletal maturity. This retrospective longitudinal observational study used instrumented gait analysis (GA) <8 and >15 years old in children with bilateral CP. The primary variable was knee flexion in stance phase. Eighty children (160 limbs) were included; 49% were male, 51% female. Mean age at first GA was 6.0 (SD: 1.2) years and 19.6 (SD: 4.5) years at final GA. Mean follow-up was 13.7 (SD: 4.7) years. Children were classified as Gross Motor Function Classification System I-8, II-46 and III-26. Average Gross Motor Function Measure Dimension D was 72% (SD: 20%). Hamstring lengthenings occurred once in 82, twice in 54 and three times in 10 limbs. From initial to final GA, average knee flexion in stance was unchanged, 27.8° (SD: 14.8°) to final 27.0° (SD: 11.2°; P = 0.54). Knee flexion at foot contact was 39.6° (SD: 13.0°), improving to final GA of 30.7° (SD: 10.6°; P < 0.001). Initial gait deviation index was 65.8 (SD: 31.9), improving to final 78.9 (SD: 28.2; P < 0.001). Older age, males and concomitant plantar flexor lengthening predicted change toward more flexed knee gait. Hamstring lengthening did not lead to back-kneeing gait at maturity while maintaining childhood stance phase knee flexion. A subgroup still developed significant flexed knee gait posture and may have benefited from more aggressive treatment options. This outcome may also be impacted by diverse functional levels, etiologies and treatments of flexed knee gait.

Changes in foot posture evaluated with dynamic pedobarography over the course of childhood in ambulatory youth with cerebral palsy.

Purpose: Foot deformities are prevalent in children with cerebral palsy, but there is limited research on the progression of foot posture during growth. Our study aimed to evaluate the change in dynamic foot posture in children with cerebral palsy. Methods: Children with cerebral palsy, aged 17-40 months, were recruited to participate in this Institutional Review Board-approved prospective longitudinal study by having serial foot posture evaluations. The coronal plane index and foot segmental impulses were measured with dynamic pedobarography. Data were compared between children stratified by Gross Motor Function Classification System level and typically developing children using serial Welch's t-tests across time with Holm correction for multiple comparisons. Results: In total, 33 children (54 limbs) were included in the analysis (21 bilateral and 12 unilateral; Gross Motor Function Classification System: I-13, II-14, III-4, IV-2. Children completed 16.9 (± 4.4) evaluations (initial age 2.9 (± 0.7) and final age 18.6 (± 1.7) years)). Early valgus foot posture normalizes in children at Gross Motor Function Classification System levels I/II and persists in children at levels III/IV who do not have foot surgery. For most young children, foot posture development is variable. Conclusion: Foot posture in young children with cerebral palsy begins in valgus and tends to normalize in youth who walk without an assistive device. Conservative management of foot deformity is recommended in early childhood. Level of evidence: Level II, prognostic study.

Self-reported Health-related Quality of Life in Adolescents With Cerebral Palsy.

BACKGROUND: Happiness, comfort, and motor function contribute to satisfaction with life for individuals with cerebral palsy (CP). Evidence-based medical care can improve motor function and physical health of youth with CP. Less is known about medical care and its relationship to health-related quality of life (HRQOL) in adolescents and young adults with CP. This study aimed to describe HRQOL among adolescents with CP to examine differences between adolescent (self) and parent (proxy) reports of HRQOL and to explore associations of pain, age, and gross motor function with HRQOL. METHODS: This is a retrospective study including adolescents with CP classified as Gross Motor Function Classification System levels I to V, ages 11 to 20 years, reading ≥ a fourth-grade level, and who completed the self-reported Pediatric Outcomes Data Collection Instrument (PODCI). Parents completed the PODCI concurrently or within 12 months and scores were compared. In addition, self-reported scores were compared between age bands, across Gross Motor Function Classification System levels, with typically developing youth (TDY), and between youth with/without pain. RESULTS: PODCI scores from 102 adolescents [59 males; 15.0 (SD: 2.6) years old] were examined. Scores from 50 adolescents and parents were matched. Mean self-reported scores were significantly higher than mean parent-reported scores in 4 domains: upper extremity and physical function ( P =0.018), sports and physical function ( P =0.005), happiness ( P =0.023), and global functioning ( P =0.018). All domains, except Happiness, were significantly < TDY ( P <0.01). The presence of pain was associated with lower scores in all domains ( P <0.05). CONCLUSION: Examining HRQOL with the PODCI revealed significant limitations in physical function and higher pain in adolescents with CP compared with TDY. Self- and parent-reported PODCI results should be considered separately. Adolescents report higher HRQOL compared with parent proxy. Recognizing and validating the perspectives of youth and their parents presents an opportunity for providers to discuss different points of view with families. Such engagement can help promote self-efficacy in youth with CP as they transition to the responsibility of guiding their own care in adulthood. LEVEL OF EVIDENCE: III, Retrospective comparative study.

Preoperative Biopsychosocial Assessment and Length of Stay in Orthopaedic Surgery Admissions of Youth with Cerebral Palsy.

Caregivers of children with cerebral palsy (CP) experience stress surrounding orthopaedic surgery related to their child's pain and recovery needs. Social determinants of health can affect the severity of this stress and hinder health care delivery. A preoperative biopsychosocial assessment (BPSA) can identify risk factors and assist in alleviating psychosocial risk. This study examined the relationship between the completion of a BPSA, hospital length of stay (LOS), and 30-day readmission rates for children with CP who underwent hip reconstruction (HR) or posterior spinal fusion (PSF). Outcomes were compared with a matched group who did not have a preoperative BPSA. The BPSA involved meeting with a social worker to discuss support systems, financial needs, transportation, equipment, housing, and other services. A total of 92 children (28 HR pairs, 18 PSF pairs) were identified. Wilcoxon analysis was statistically significant (p = 0.000228) for shorter LOS in children who underwent PSF with preoperative BPSA (median = 7.0 days) vs. without (median = 12.5 days). Multivariate analysis showed that a BPSA, a lower Gross Motor Function Classification System level, and fewer comorbidities were associated with a shorter LOS after both PSF and HR (p < 0.05). Identifying and addressing the psychosocial needs of patients and caregivers prior to surgery can lead to more timely discharge postoperatively.

Can the Shriners Hospital Upper Extremity Evaluation (SHUEE) Detect Change in Dynamic Position and Spontaneous Function of the Upper Limb in People With Hemiplegic Cerebral Palsy?

BACKGROUND: The Shriners Hospital Upper Extremity Evaluation (SHUEE) is a video-based measure designed to assess upper extremity function in people with cerebral palsy (CP). The SHUEE completes both dynamic positional analysis (DPA; position during functional activities) and spontaneous functional analysis (spontaneous use of the involved limb). Although the SHUEE has been suggested as a measure for planning upper limb interventions and evaluating outcomes, limited evidence of its ability to detect change exists. Thus, this study aimed to describe responsiveness of the SHUEE to detect change after orthopaedic surgery. METHODS: In this Institutional Review Board-approved retrospective cohort study, we identified children with CP who were administered SHUEE on≥2 encounters. We formed pairs of initial and follow-up visits between temporally adjacent visits. Pairs were assigned to a surgery or non-surgery group based on intervening upper limb orthopaedic surgery. We compared differences in baseline SHUEE scores between groups and differences in temporally adjacent SHUEE scores within groups using Welch unequal variances t tests and paired t tests, respectively. RESULTS: Nineteen people (7 female) with hemiplegic CP had≥2 SHUEE assessments; Manual Ability Classification System levels I (3), II (8), III (7), IV (1); Gross Motor Function Classification System levels I (10), II (7), IV (2); mean age at baseline 11.9 (5.1 to 19.1) years; and follow-up at 13.4 (5.5 to 19.7) years. Six people had≥2 visits leading to 14 surgical pairs and 10 non-surgical pairs. At baseline, DPA of the wrist and forearm were significantly lower in the surgical group ( P <0.05). At follow-up, no significant difference between the groups existed in DPA measures ( P >0.05). After surgical intervention, there was a significant change in overall and wrist DPA ( P <0.05). CONCLUSIONS: The DPA measures demonstrated responsiveness to expected positional changes in the arm after orthopaedic surgery in people with CP. The SHUEE was useful in identifying abnormal segmental alignment pre-surgically and documenting changes in alignment postoperatively. As orthopaedic surgery does not address limb neglect or bimanual ability, spontaneous functional analysis scores were as expected-unchanged. LEVEL OF EVIDENCE: Level III, retrospective cohort study.

Factors Associated With Short-Term Recovery Following Single-Event Multilevel Surgery for Children With Cerebral Palsy.

PURPOSE: To examine the role of multiple factors, including therapy dose, on recovery of mobility function during post-single-event multilevel surgery (SEMLS) rehabilitation in youth with cerebral palsy. METHODS: Several factors expected to influence postoperative change in Gross Motor Function Measure (GMFM) were examined: age, Gross Motor Function Classification System (GMFCS) level, cognition, number of osteotomies, surgical complications, medical comorbidities, number of therapy sessions, and preoperative measures of gait, balance, and gross motor function. RESULTS: Sixty-nine youth with cerebral palsy, GMFSC levels I-IV, who had undergone SEMLS and rehabilitation had on average 2.6 osteotomies and 89 postoperative therapy sessions. Fewer osteotomies, higher therapy dose, higher preoperative GMFM, and lower GMFM at postoperative admission were significant in determining GMFM change. CONCLUSIONS: The most relevant factors on post-SEMLS recovery were therapy dose, surgical burden, and level of gross motor function immediately before and after surgery.

The effect of medial only versus medial and lateral hamstring lengthening on transverse gait parameters in cerebral palsy.

Benefits of hamstring lengthening surgery on the sagittal plane in children with cerebral palsy have been previously demonstrated, but there is limited information on its effects on the transverse plane. This study compared the effects of medial hamstring lengthening (MHL) with those of medial and lateral hamstring lengthening (MLHL) procedures in the transverse plane. Children with gross motor function classification system (GMFCS) levels I-III who had MHL or MLHL were included. Baseline, short- (1-2 years), and long-term (3+ years) postoperative three-dimensional gait analysis outcomes were compared using analysis of variance. Children were excluded if they had concurrent osteotomies or tendon transfers. One hundred fifty children (235 limbs) were included, with 110 limbs in the MHL group (age 8.5 ± 4.1 years, GMFCS I-27%, II-52%, and III-21%) and 125 limbs in the MLHL group (age 10.0 ± 4.0 years, GMFCS I-23%, II-41%, and III-37%). Time between surgery and short- and long-term follow-up gait analysis was 1.5 ± 0.6 years and 6.6 ± 2.9 years, respectively. Transmalleolar axis became more external after MHL at both short and long terms ( P < 0.05), whereas there were only significant differences at long term in MLHL ( P < 0.05). Although hamstring lengthening has a positive impact on stance phase knee extension in children with cerebral palsy, intact lateral hamstrings after MHL likely contribute to increased tibial external rotation after surgery. Significant increases in external rotation at the knee in the long term are likely related to a trend present with growth in children with cerebral palsy rather than a direct result of surgical intervention.

Is Standing Function Improved After Orthopaedic Surgery in Children With Cerebral Palsy at GMFCS Levels III/IV?

BACKGROUND: Children with cerebral palsy (CP) at Gross Motor Function Classification System (GMFCS) levels III/IV are at risk for losses in standing function during adolescence and transition to adulthood. Multilevel surgery (MLS) is an effective treatment to improve gait, but its effects on standing function are not well documented. The objectives of our study were to describe standing function in children with CP classified as GMFCS levels III/IV and evaluate change after MLS. METHODS: This retrospective study included children with CP (GMFCS III/IV) ages 6 to 20 years who underwent instrumented gait analysis. A subset who underwent MLS were evaluated for change. Primary outcome measures were Gross Motor Function Measure dimension D, gait velocity, functional mobility scale, and the Pediatric Outcomes Data Collection Instrument (PODCI). Additional impairment level measures included foot pressure, knee extension during stance phase of gait, and knee extension passive range of motion. RESULTS: Four hundred thirty-seven instrumented gait analysis sessions from 321 children with CP (ages 13.7±4.8 y; GMFCS III-81%/IV-19%) were included. The GMFCS III group had higher Gross Motor Function Measure dimension D, gait velocity, PODCI scores, and better knee extension compared with the GMFCS IV group ( P <0.05); 94 MLS were evaluated for postoperative change 15.3±4.2 months after MLS. Children at GMFCS level III had improved PODCI scores ( P <0.05), better knee extension passive range of motion ( P <0.01), and improved coronal plane foot pressure ( P <0.05) post MLS. Maximum knee extension during stance and heel impulse improved significantly in both groups ( P <0.01). CONCLUSIONS: Standing function of children with CP at GMFCS IV was significantly more limited than at GMFCS III. After MLS, both groups (III/IV) showed improvement in impairment level outcomes (knee extension and foot position), whereas only those functioning at GMFCS III had improvement in activity/participation outcomes according to the PODCI. For children with CP at GMFCS levels IV, MLS may improve standing function, but appropriate goals related to assisted standing and measurement protocols sensitive to limited functional mobility should be adopted. LEVEL OF EVIDENCE: Level III-retrospective comparative study.

Walking activity after multilevel orthopedic surgery in children with cerebral palsy.

AIM: To determine how surgical burden and preoperative factors affect the recovery of walking activity after multilevel orthopedic surgery (MLS). METHOD: In this retrospective study, inclusion criteria were a diagnosis of cerebral palsy, MLS, and walking activity monitoring using a StepWatch device within 12 months pre-MLS and 24 months post-MLS. The outcome measure was total mean strides per day normalized to age and Gross Motor Function Classification System level. Pre- and postoperative walking activity were compared using unpaired t-tests; the effects of preoperative predictors and surgical burden on the recovery of walking activity were evaluated using regression analysis. RESULTS: Participants included 178 children (mean age 12 years 10 months [SD 8 years 7 months; range 4-20 years]; 91 males, 87 females). On average, children returned to baseline walking activity 3 months after low-burden surgery and 1 year 2 months after high-burden surgery. Postoperative walking activity was higher for children who had surgery at a younger age and those with a higher preoperative mobility function. INTERPRETATION: The burden of MLS was found to be inversely related to the time to recovery of postoperative walking activity. These findings provide evidence to help clinicians set expectations for return to function post-MLS. Further study is necessary to investigate the impact of postoperative factors on walking activity recovery. WHAT THIS PAPER ADDS: High-burden surgeries lead to longer recovery than low-burden surgeries. Younger children recover walking activity faster after multilevel orthopedic surgery. Children with high preoperative mobility function recover walking activity faster after surgery.

OBJETIVO: Determinar como a carga cirúrgica e os fatores pré-operatórios afetam a recuperação da atividade de caminhada após cirurgia ortopédica multinível (MLS). MÉTODOS: Neste estudo retrospectivo, os critérios de inclusão foram um diagnóstico de paralisia cerebral, MLS e monitoramento da atividade de caminhada usando um dispositivo Step Watch dentro de 12 meses pré-MLS e 24 meses pós-MLS. A medida de resultado foi o total de passos médios por dia normalizados para idade e nível do Sistema de Classificação da Função Motora Grossa. A atividade de caminhada pré e pós-operatória foi comparada usando testes t não pareados; os efeitos dos preditores pré-operatórios e da carga cirúrgica na recuperação da atividade de caminhada foram avaliados por meio de análise de regressão. RESULTADOS: Os participantes incluíram 178 crianças (idade média de 12 anos e 10 meses [DP 8 anos e 7 meses; intervalo de 4 a 20 anos]; 91 meninos, 87 meninas). Em média, as crianças retornaram à atividade de caminhada inicial 3 meses após a cirurgia de baixa carga e 1 ano e 2 meses após a cirurgia de alta carga. A atividade de caminhada pós-operatória foi maior para crianças que foram operadas em idade mais jovem e aquelas com maior função de mobilidade pré-operatória. INTERPRETAÇÃO: A carga de MLS foi inversamente relacionada ao tempo de recuperação da atividade de caminhada pós-operatória. Esses achados fornecem evidências objetivas para ajudar os médicos a definir as expectativas de retorno à função pós-MLS. Mais estudos são necessários para investigar o impacto dos fatores pós-operatórios na recuperação da atividade de caminhada.

Residual Deformity and Outcome of Ambulatory Adults With Cerebral Palsy: A Long-term Longitudinal Assessment.

BACKGROUND: Advances in pediatric orthopaedic care have improved mobility and function for children with cerebral palsy (CP) as mobility declines from adolescence into adulthood. The long-term effectiveness of modern orthopaedic care is not widely reported. This study aimed to report the pediatric orthopaedic surgical burden, residual deformities, and outcomes using objective evidence of mobility in ambulatory adults with CP. METHODS: An institutional review board-approved prospective cohort study was performed in ambulatory adults with CP between 25 and 45 years, who had an adolescent gait analysis. Orthopaedic interventions were reviewed, and adolescent and adult gait analyses were compared using paired 2-tailed t tests. Adults were categorized by the presence of no, mild, or severe residual deformities in rotation, crouch, stiff knee, equinus, and foot deformity. RESULTS: Of 106 adults with CP, Gross Motor Function Classification System (GMFCS) distribution was grade I (22%), II (50%), III (23%), and IV (5%). Sixty-one males and 45 females were tested. The average age was 30±4 years with follow-up of 13±4 years since previous analysis; 279 surgical events (1165 procedures) were performed with a mean per patient of 2.6 events and 11 procedures. Comm on procedures were gastrocsoleus complex (88%) and hamstring lengthening (79%). The mean gait deviation index at adolescent and adult visit were 72.7±13 and 72.3±13 (P=0.78). Mean gait velocity at the adolescent visit was 85±27 and 79±31 cm/s at adult visit (P=0.02). Both gait deviation index and gait velocity change were clinically insignificant. Fifty-seven adults (81 limbs, 54%) had mild residual deformities. Residual hip internal rotation, pes planovalgus, and crouch gait were common. Severe deformities impacting function or causing pain were present in 11 participants (14 limbs, 10%). Seven of the 11 adults with severe deformities were worse compared with their adolescent evaluation; 4 were unchanged. CONCLUSIONS: Correcting deformities before adulthood has lasting stability with little functional loss in most ambulatory young adults with CP. Increasing deformity after adolescence can occur in young adults but is uncommon. LEVEL OF EVIDENCE: Level III.

Well-Being of Ambulatory Adults With Cerebral Palsy: Education, Employment, and Physical Function of a Cohort Who Received Specialized Pediatric Care.

Introduction: The transition from pediatric health care and school systems presents enormous challenges for young adults with cerebral palsy (CP). The lack of strong societal support during this seminal life event is well-documented and leads many adults with CP to struggle with independence, higher education, and employment. Despite the relatively high prevalence of CP, information about the experiences and function of adults with CP in our society continues to be limited. The purpose of this project was to describe well-being by assessing education, employment, physical function, walking activity, and utilization of health care in an ambulatory adult cohort with CP who received specialized pediatric care at our center. Method: In this Institutional Review Board-approved prospective study, we invited former patients from our tertiary care pediatric CP center to complete a set of patient-reported outcomes including (1) the Patient-Reported Outcomes Measurement Information System domains of physical function and pain interference, (2) the Satisfaction with Life Scale, and a project-specific demographic questionnaire about education, employment, income, independence, pain, and health care utilization. Participants also wore a pedometer for 8 days to monitor community walking activity. Chi-squared pairwise or t-tests were used as appropriate to compare survey responses and walking activity data between three groups: participants who self-reported, those who reported by proxy, and published normative data from age-matched typically developing adult (TDA) samples. Results: One hundred twenty-six adults with CP consented to participate; 85 self-reported [age 29.7 ± 4.3 years; Gross Motor Function Classification System: I (28%), II (47%), and III, (25%)] and 41 reported by proxy [age 29.7 ± 4.1 years; Gross Motor Function Classification System: I (10%), II (68%), and III (22%)]. For the group who self-reported, high school graduation rate (99%) was similar to TDA (92%; p = 0.0173) but bachelor's degree achievement rate (55%) was higher than TDA (37%; p < 0.001). Despite more advanced education, the unemployment rate in this group was higher than national levels at 33% and was associated with high utilization of Social Security Disability Insurance (33%). Within the self-reporting group, 13% required a caregiver. For the group who reported by proxy, educational levels (73% high school graduates, 0 bachelor's degree) were lower than the general population (p < 0.001) and unemployment was higher than the national level, at 64%. Unemployment in this group was associated with high utilization of Social Security Disability Insurance (85%). Within the proxy-reporting group, 71% required a caregiver. The full cohort demonstrated lower levels of physical function according to the Patient-Reported Outcomes Measurement Information System and less community walking activity compared with TDA references (p < 0.001). This cohort of adults with CP reported significantly higher frequency of chronic pain (48 vs. 12% for TDA; p < 0.001), but less pain interference with daily activities than TDA based on Patient-Reported Outcomes Measurement Information System results (p < 0.001). This cohort reported good to excellent overall health (93%) and high utilization of primary care (98%), but limited utilization of specialty care, specifically orthopedic care (21%) and physical therapy (15%). Discussion: This cohort of adults with CP had similar levels of education as the general population, but had relatively high rates of unemployment, caretaker need, and Social Security Disability Insurance utilization. Although chronic pain was frequent, the impact of pain on work and independent living did not exceed reports from a typically developing reference. Better targeted societal resources for adults with physical disabilities are urgently needed to allow equitable access to employment, promote opportunities for independence, and enable full participation in community life.

Mobility and gait in adults with cerebral palsy: Evaluating change from adolescence.

BACKGROUND: Previous studies have looked at the short-term effectiveness of conservative and surgical treatment of children with cerebral palsy (CP), but few have explored the long-term outcomes into adulthood using gait analysis and patient-reported outcome measures. RESEARCH QUESTION: How do gait, mobility, and patient-reported outcomes in adults with CP who received specialized pediatric orthopedic care change from adolescence? METHODS: We identified 645 adults with 1) CP, 2) age 25-45 years, and 3) an adolescent instrumented gait analysis (IGA) at our center. Measurement outcomes included physical examination, IGA, and select domains of the Patient-Reported Outcomes Measurement Information System (PROMIS). RESULTS: Participants included 136 adults with CP; Gross Motor Function Classification System levels I (21 %), II (51 %), III (22 %), and IV (7%); 57 % males; and average age 16 ± 3/29 ± 3 years (adolescent/adult visits). There was no significant difference in gait deviation index, stride length, or gross motor function between adolescent and adult visits. There were statistically significant but not clinically meaningful declines in gait velocity. At adulthood, PROMIS results revealed limitations in physical function compared with a normative sample but no differences in depression, participation, or pain interference. SIGNIFICANCE: In this relatively homogeneous group of adults with CP who received orthopedic care from one center, gait and gross motor function showed no clinically meaningful change from adolescence, which differs from recent reports of declining mobility in adulthood. Expert orthopedic care, guided by IGA, may prevent losses in functional mobility for adults with CP.

The change in sagittal plane gait patterns from childhood to maturity in bilateral cerebral palsy.

BACKGROUND: The longitudinal stability of sagittal gait patterns in diplegic cerebral palsy (CP), stratified using the Rodda classification, is currently unknown. RESEARCH QUESTION: What is the trajectory of sagittal plane gait deformities as defined by the Rodda classification in a large cohort treated with orthopedic surgery guided by gait analysis? METHODS: A retrospective study utilized gait analysis to evaluate sagittal gait parameters before age 8 and after age 15 years. Individual limbs were categorized at each time point according to the Rodda classification based on mean sagittal plane knee and ankle angle during stance. Welch's t-tests compared gait variables from early childhood with maturity and examined changes associated with plantarflexor lengthening surgery. RESULTS: 100 youth with CP were evaluated twice: at a mean age of 5.49 ± 1.18 and 19.09 ± 4.32 years, respectively. Gross Motor Function Classification System distribution at maturity was I (10.5 %), II (55.2 %), III (28.6 %), and IV (5.7 %). At the initial visit, most limbs were in either true equinus (30 %) or jump-knee gait (26.5 %). At maturity, crouch gait (52.5 %) was the most common classification, of which 47.6 % were mild (1-3 standard deviations from age-matched norm; 21°-30°) and 52.4 % moderate or severe. For the entire cohort, at initial and final visits, respectively, mean knee flexion in stance was 26.8°±14.8° and 25.9°±11.4° (p = 0.320), ankle dorsiflexion in stance increased from -0.3°±11.5° to 9.0°±6.0° (p < 0.001), and passive knee flexion contracture was -2.3°±7.0° and -3.9°±8.0° (p = 0.043). In children who started in true equinus, apparent equinus, and crouch, there was no difference in stance phase knee flexion at maturity between those who underwent plantarflexor lengthenings versus those who did not (p > 0.18). SIGNIFICANCE: The trend in this cohort was toward crouch with increased stance phase ankle dorsiflexion from early childhood to maturity. Plantarflexor lengthenings were not a significant factor in the progression of stance phase knee flexion.

Factors associated with walking activity in adults with cerebral palsy.

BACKGROUND: This prospective study used instrumented gait analysis, patient-reported outcomes, and portable accelerometers to examine walking activity in adults with cerebral palsy (CP). RESEARCH QUESTION: This study aimed to provide objective data and evaluate factors associated with walking activity in adults with CP. METHODS: Participants with CP (ages 25-45 years) completed instrumented gait analysis and patient-reported outcomes, including the Patient Reported Outcome Measurement Information System (PROMIS) and Satisfaction with Life Score (SWLS), and wore a StepWatch for 8 days. Average strides per day, stratified by Gross Motor Function Classification System (GMFCS), were compared with nondisabled adults ages 30-39 years utilizing Welch's t-tests with Bonferroni corrections. Correlation coefficients and stepwise multiple linear regression analyses examined relationships between walking activity and GMFCS, gait deviation index (GDI), gait velocity, PROMIS physical function, SWLS, body mass index (BMI), and employment. RESULTS: Participants included 109 adults with CP, ages 29 ± 4 years, classified at GMFCS levels I/II (73 %) and III/IV (27 %). Compared with nondisabled adults, daily stride count was significantly lower in both groups of adults with CP (p < 0.00025), with a progressive decline according to GMFCS level. Walking activity correlated with PROMIS physical function (r = .42), GDI (r = .48), and gait velocity (r = .58). Association for employment was lower (r = 0.27) but significant, while age, SWLS, and BMI were not individually correlated with walking activity. Stepwise, multiple linear regression modeled with Akaike information criterion explained 40.9 % of the observed variability in walking activity in this cohort of adults with CP. SIGNIFICANCE: Physical function, as classified by GMFCS or measured by PROMIS and self-selected walking velocity, has the strongest association with and is the most significant predictor of walking activity in adults with CP. After accounting for physical function, a small amount of the variation in walking activity can be explained by GDI, employment, and age.

Comparison of Surgical Outcomes for Distal Rectus Femoris Transfer and Resection Surgeries in Children With Cerebral Palsy With Stiff Knee Gait.

BACKGROUND: Children with cerebral palsy (CP) often present with a stiff knee gait pattern because of rectus femoris (RF) spasticity and/or contracture. Rectus femoris transfers (RFTs) and resections are surgical procedures aimed at reducing muscle stiffness, thereby improving knee flexion during the swing phase of gait. Previous research has consistently demonstrated objective benefits of rectus transfer using instrumented gait analysis (IGA). Rectus femoris resection (RFR), a relatively simpler procedure, shows similar improvement in knee range of motion during gait. The objective of this study was to compare surgical outcomes between rectus transfers and resections using 3-dimensional IGA. METHODS: Children with spastic CP who had RFTs or resections were retrospectively matched by walking speed and preoperative knee kinematics from 3-dimensional IGA (peak and timing of peak knee flexion in swing). Secondary outcomes included knee range of motion and maximum knee extension during gait. RESULTS: Twenty-eight children were included in both the transfer group [age 9.4±2 y; Gross Motor Function Classification System (GMFCS) I (3 children), II (15 children), III (8 children), and IV (2 children)] and the resection group [age 10.6±2.5 y; GMFCS I (1 child), II (14 children), and III (13 children)]. Both surgical groups showed statistically significant short-term postsurgical improvements in peak knee flexion during swing (P<0.001 for the transfer group and P=0.003 for the resection group) and Duncan-Ely test (P=0.004 for the transfer group and P<0.001 for the resection group). Further analysis by GMFCS level showed children at GMFCS levels III/IV had a greater tendency to crouch after RFT when compared with children at GMFCS levels I/II. This tendency was not observed in the RFR group. CONCLUSIONS: Both transfer and resection surgeries significantly improved gait kinematics short-term outcomes in children with spastic CP who present with stiff knee gait pattern. Further studies are required to compare long-term outcomes of both surgeries. LEVEL OF EVIDENCE: Level III-retrospective matched-cohort study.

Factors influencing post-surgical variability in StepWatch data in youth with cerebral palsy.

BACKGROUND: Over the past several years, activity monitors have become very popular in the general population, and due to their low cost and ease of use, are starting to be seen as clinical tools for the assessment of interventions. This presents researchers with the opportunity to better understand how activity, or lack thereof, is related to the recovery of patients. However, even in individuals without disabilities, there is a high degree of variability in activity monitor data which must be better understood in order to produce clinically meaningful interpretation of such data. RESEARCH QUESTION: What sources of variability contribute the most to the daily scatter in activity data as measured by StepWatches in youth with Cerebral Palsy (CP)? In particular, do non-clinical factors such as weather and location contribute to this variability significantly? METHODS: This was a retrospective study making use of data from our activity monitoring protocol of youths with CP who obtain single event multi-level surgeries. Before and after these surgeries, 57 such youths aged 4.2-21.3 years were issued StepWatches to monitor daily activity for 8 day periods over 24 months duration. Weather data and walk scores for the patients' home locations were collected from online databases. Steps per hour were predicted from clinical and environmental data using bootstrapped regression to determine the stability of regression coefficients and the percent variability explained by each variable. RESULTS: Time since surgery, age, season, GMFCS level, and surgical burden were significant variables in the model. Of them, GMFCS level was most important and explained nearly 16% of the variability in the data. Temperature, precipitation, and walk score had small effects on step count variance. SIGNIFICANCE: Understanding sources of variability in step-counts is important if such a measure is to be used as a clinical measure of recovery, and may be important in the consideration of future surgical planning.

The long-term outcome of pelvic asymmetry during gait in children with cerebral palsy following unilateral femoral derotation osteotomy.

In this retrospective study, children with cerebral palsy underwent a unilateral femoral derotation osteotomy and had a preoperative (PO), short-term postoperative (1-3 years), and a long-term postoperative (≥5 years) gait analysis. Patients were subdivided into groups by the PO pelvic presentation and Gross Motor Function Classification System level. In children with PO pelvic external rotation, femoral derotation osteotomy decreased the hip internal rotation and decreased the pelvic external rotation. These results could influence surgical planning to achieve long-term pelvic asymmetry.

Long-term outcome of knee hyperextension in children with cerebral palsy.

This study evaluated knee hyperextension course in children with cerebral palsy over a 5-year follow-up. Knee hyperextension was identified in 308 knees, of which 97 had follow-up greater than 5 years. Between the tests, 40% of limbs had plantar flexor lengthening (PFL). Overall, knee flexion and ankle dorsiflexion in stance increased (P<0.0001). Similar changes were noted between limbs that had PFL and those that did not. PFL is indicated in cases associated with equinus. However, the role of multilevel surgery in the treatment of knee hyperextension needs to be further determined.