Knee and ankle range of motion and spasticity from childhood into adulthood: a longitudinal cohort study of 3,223 individuals with cerebral palsy.

BACKGROUND AND PURPOSE: Reduced range of motion (ROM) and spasticity are common secondary findings in cerebral palsy (CP) affecting gait, positioning, and everyday functioning. These impairments can change over time and lead to various needs for intervention. The aim of this study was to analyze the development path of the changes in hamstring length, knee extension, ankle dorsiflexion, and spasticity in hamstrings and gastrosoleus from childhood into adulthood in individuals with CP at the Gross Motor Function Classification System (GMFCS) levels I-V. METHODS: A longitudinal cohort study was undertaken of 61,800 measurements in 3,223 individuals with CP, born 1990-2017 and followed for an average of 8.7 years (range 0-26). The age at examination varied between 0 and 30 years. The GMFCS levels I-V, goniometric measurements, and the modified Ashworth scale (MAS) were used for repeated assessments of motor function, ROM, and spasticity. RESULTS: Throughout the follow-up period, knee extension and hamstring length exhibited a consistent decline across all individuals, with more pronounced decreases evident in those classified at GMFCS levels III-V. Ankle dorsiflexion demonstrated a gradual reduction from 15° to 5° (GMFCS I-IV) or 10° (GMFCS V). Spasticity levels in the hamstrings and gastrosoleus peaked between ages 5 and 7, showing a propensity to increase with higher GMFCS levels. CONCLUSION: Passive ROM continues to decrease to 30 years of age, most pronouncedly for knee extension. Conversely, spasticity reached its peak at a younger age, with a more notable occurrence observed in the gastrosoleus compared with the hamstrings. Less than 50% of individuals had spasticity corresponding to MAS 2-4 at any age.

Incidence and sequence of scoliosis and windswept hip deformity: which comes first in 4148 children with cerebral palsy? A longitudinal cohort study.

BACKGROUND: The aim was to analyse whether scoliosis or windswept hip deformity (WSH) occurs first for children with cerebral palsy (CP). METHODS: This longitudinal cohort study using data from 1994 - 2020 (26 years) involved 41,600 measurements of 4148 children (2419 [58.3%] boys) with CP born 1990 - 2018 and registered into the Swedish CP follow-up program. Children were followed from a mean age of 2.8 [SD 1.4] years, until they developed either scoliosis or WSH or were removed at surgery. RESULTS: WSH developed first in 16.6% of the children (mean age 8.1 [SD 5.0] years), and scoliosis in 8.1% (mean age 8.1 [SD 4.9] years). The incidence of WSH was higher than scoliosis across all levels I-V of the Gross Motor Function Classification System (GMFCS), both sexes, and for those with dyskinetic (20.0%) or spastic (17.0%) CP. The incidence of scoliosis was highest (19.8%) and developed earliest in children with GMFCS level V (mean age 5.5 [SD 3.5] years), and in children with dyskinetic (17.9%) CP (mean age 7.0 [SD 4.7] years). CONCLUSIONS: WSH presents earlier than scoliosis in most children with CP. Children with higher GMFCS level or dyskinetic CP are more likely to develop these deformities at a younger age.

Probability of independent walking and wheeled mobility in individuals with cerebral palsy.

AIM: To estimate the probability of independent walking and wheeled mobility in individuals with cerebral palsy (CP) at home and in the community in relation to age and gross motor function. METHOD: This was a longitudinal cohort study using data reported into the combined Swedish CP follow-up programme and national quality registry from October 2000 to October 2022. Walking, walking with aids, wheeled mobility, and assisted mobility defined independent or assisted mobility at home and in the community, based on the Functional Mobility Scale with additional data on wheelchair performance, were assessed. RESULTS: There were 52 858 examinations reported for 6647 individuals with CP (age range 0-32 years, follow-up period 0-22 years). Most children and adults in Gross Motor Function Classification System (GMFCS) levels I or II walked without assistive devices. The probability of dependence on others for mobility in the community was high for both children and adults in GMFCS levels III to V. INTERPRETATION: Although independent mobility is vital for participation and social inclusion, many children and adults with CP are dependent on others for mobility. We recommend clinicians, together with families and individuals with CP, explore how to increase access to independent mobility from an early age and continuously throughout the life course. WHAT THIS PAPER ADDS: • There is a high probability of independent walking in Gross Motor Function Classification System (GMFCS) levels I to II. • Mobility options vary most at home and in the community in GMFCS level III. • Being dependent on others for mobility is likely in GMFCS levels III to V.

[Significant medical improvements with CPUP - a combined follow-up program and national quality registry for cerebral palsy]. / CPUP ­ från reaktiv till preventiv behandling av cerebral pares.

CPUP is a combined follow-up program and national quality registry for cerebral palsy (CP). Since its inception in southern Sweden in 1994, CPUP has expanded geographically to cover all of Sweden, and similar programs are used in several northern European countries. Over 95% of all children with CP in Sweden, and a growing proportion of adults, are followed according to CPUP. The content of CPUP has been developed to involve most professions working with CP. CPUP has led to significant medical improvements. As an example, the percentage of individuals developing hip dislocation has decreased from 10% to 0.5%. The program's strengths include its interdisciplinary collaboration, user involvement, and the ability to inform and improve the quality of care systematically. Nevertheless, challenges include the need for ongoing funding and support. CPUP's success exemplifies how national quality registers can integrate into healthcare, enabling a shift from reactive to proactive care.

Pain and labor outcomes: A longitudinal study of adults with cerebral palsy in Sweden.

BACKGROUND: Pain is a global health concern with substantial societal costs and limits the activity participation of individuals. The prevalence of pain is estimated to be high among individuals with cerebral palsy (CP). OBJECTIVES: To estimate the association between pain and labor outcomes for adults with CP in Sweden. METHODS: A longitudinal cohort study based on data from Swedish population-based administrative registers of 6899 individuals (53,657 person-years) with CP aged 20-64 years. Individual fixed effects regression models were used to analyze the association between pain and labor outcomes (employment and earnings from employment), as well as potential pathways through which pain might affect employment and earnings. RESULTS: Pain was associated with adverse outcomes varying across severity, corresponding to a reduction of 7-12% in employment and 2-8% in earnings if employed. Pain might affect employment and earnings through increased likelihood of both sickness leave and early retirement. CONCLUSION: Pain management could potentially be important to improve labor outcomes for adults with CP, in addition to improving the quality of life.

Comparison of the six-minute walk test performed over a 15 and 30 m course by children with cerebral palsy.

BACKGROUND: The aim of this study was to compare performance on the six-minute walk test (6MWT) performed over 15 m and 30 m courses by children and youths with cerebral palsy (CP). METHODS: Children and youths with CP at Gross Motor Function Classification System levels I-IV performed the 6MWT in a straight 15 m-long corridor (first trial) and 30 m-long corridor (second trial). The intraclass correlation coefficient (ICC) and Bland-Altman plots were used to evaluate the agreement between the 6MWT results for the two corridor lengths. RESULTS: We included 82 children and youths with CP (36 girls, 46 boys), with a mean age of 11.7 years (SD 4.2, range 5-22 years). There was high agreement between the results of the two 6MWTs: ICC 0.93 (95% confidence interval 0.76-0.97). The total walking distance was longer for the 30 m course (median 399 m, range 44-687 m) than the 15 m course (median 357 m, range 24-583 m). CONCLUSIONS: We observed good agreement for the performance of the 6MWT in the 15 m and 30 m courses, although the total walking distance was greater for the 30 m course. We recommend that the same distance is used when evaluating changes in walking ability for an individual child. Both distances are appropriate when measuring endurance in children and youths with CP.

Sequence of flexion contracture development in the lower limb: a longitudinal analysis of 1,071 children with cerebral palsy.

BACKGROUND: To prevent severe contractures and their impact on adjacent joints in children with cerebral palsy (CP), it is crucial to treat the reduced range of motion early and to understand the order by which contractures appear. The aim of this study was to determine how a hip-knee or ankle contracture are associated with the time to and sequence of contracture development in adjacent joints. METHODS: This was a longitudinal cohort study of 1,071 children (636 boys, 435 girls) with CP born 1990 to 2018 who were registered before 5 years of age in the Swedish surveillance program for CP and had a hip, knee or ankle flexion contracture of ≥ 10°. The results were based on 1,636 legs followed for an average of 4.6 years (range 0-17 years). The Cox proportional-hazards model adjusted for Gross Motor Function Classification System (GMFCS) levels I-V was used to compare the percentage of legs with and without more than one contracture. RESULTS: A second contracture developed in 44% of the legs. The frequency of multiple contractures increased with higher GMFCS level. Children with a primary hip or foot contracture were more likely to develop a second knee contracture. Children with a primary knee contracture developed either a hip or ankle contracture as a second contracture. CONCLUSIONS: Multiple contractures were associated with higher GMFCS level. Lower limb contractures appeared in specific patterns where the location of the primary contracture and GMFCS level were associated with contracture development in adjacent joints.

An international clinical perspective on functioning and disability in adults with cerebral palsy.

BACKGROUND: This international, multi-center cross-sectional study is one of the preparatory studies in the development of the International Classification of Functioning, Disability and Health (ICF) Core Sets for adults with cerebral palsy (CP) to describe their functioning and health. OBJECTIVE: To identify the most common problems in functioning of adults with CP presenting in healthcare services, and facilitating and hindering environmental factors, using the ICF as a reference. METHODS: Participants were adults with CP who visited healthcare services in the Netherlands, Sweden, Thailand, and the United States. Structured interviews were performed using an adapted version of the generic ICF checklist 2.1a (106 categories) to rate the participant's functioning and the impact of environmental factors. Descriptive statistics were used for frequency analysis. RESULTS: In total, 101 participants were included, of whom 69 without intellectual disability (mean age ± SD of 38.4 ± 14.7 y; 85.5% with spastic type of CP; Gross Motor Function Classification System (GMFCS) levels I-V) and 32 with intellectual disability (mean age ± SD of 25.0 ± 6.4 y; 71.9% with spastic type of CP; GMFCS levels I-V). A total of 104 ICF categories in the ICF checklist were frequently present in adults with CP: 27 body functions, 4 body structures, 53 activities and participation, and 20 environmental factors. CONCLUSIONS: The most common problems of adults with CP presenting in healthcare services are diverse and highly prevalent. The study results add the clinical perspective on relevant categories of functioning to the basis for developing the ICF Core Sets for adults with CP.

Eating and drinking ability and nutritional status in adults with cerebral palsy.

AIM: To describe eating and drinking ability in adults with cerebral palsy (CP) relative to sex, age, subtype, and severity of gross motor and hand function and nutritional status. METHOD: This was a cross-sectional study based on data of 2035 adults with CP, median age 26 years (range 18-78 years). The Eating and Drinking Ability Classification System (EDACS), Gross Motor Function Classification System (GMFCS), and Manual Ability Classification System (MACS) were used in addition to subtype, body weight, height, body mass index (BMI), skin fold thickness, and gastrostomy. Linear regression models were used to estimate associations between body weight and the other variables. RESULTS: More than half of the adults (52.5%) eat and drink safely and 32.4% have dysphagia with limitations to eating and drinking safety. Weight, height, and BMI decreased with increasing EDACS levels. In EDACS level V, 86% had a gastrostomy, 23.4% in EDACS levels III to V were underweight, whereas 42.3% in EDACS levels I to II had a BMI over 25, indicating overweight or obesity. Increasing EDACS levels and need of support during meals were associated with lower body weight. INTERPRETATION: Adults with CP should be routinely screened and treated for dysphagia to avoid nutritional complications. Being dependent on others during mealtimes is a risk factor for low body weight.

Postural asymmetries, pain, and ability to change position of children with cerebral palsy in sitting and supine: a cross-sectional study.

PURPOSE: To examine any associations between postural asymmetries, postural ability, and pain for children with cerebral palsy in sitting and supine positions. METHODS: A cross-sectional study of 2,735 children with cerebral palsy, 0-18 years old, reported into the Swedish CPUP registry. Postural asymmetries, postural ability, the gross motor function classification system levels I-V, sex, age and report of pain were used to determine any relationship between these variables. RESULTS: Over half the children had postural asymmetries in sitting (n = 1,646; 60.2%) or supine (n = 1,467; 53.6%). These increased with age and as motor function decreased. Children were twice as likely to have pain if they had an asymmetric posture (OR 2.1-2.7), regardless of age, sex and motor function. Children unable to maintain or change position independently were at higher risk for postural asymmetries in both supine (OR 2.6-7.8) and sitting positions (OR 1.5-4.2). CONCLUSIONS: An association was found between having an asymmetric posture and ability to change position in sitting and/or lying; and with pain. The results indicate the need to assess posture and provide interventions to address asymmetric posture and pain.Implications for rehabilitationPostural asymmetries are present in children with cerebral palsy at all levels of gross motor function.Postural asymmetries increase with age and are associated with pain.Assessment of posture should be included in surveillance programs to enable early detection and treatment.

Relationship between scoliosis, windswept hips and contractures with pain and asymmetries in sitting and supine in 2450 children with cerebral palsy.

PURPOSE: This cross-sectional study of 2450 children with cerebral palsy aimed to analyse the prevalence and association of scoliosis, windswept hips, hip and knee contractures. METHODS: Logistic regression was used to estimate associations with pain, postural asymmetries, and ability to change position for children at Gross Motor Function Classification System (GMFCS) levels I-V, aged 0-18 years. RESULTS: Most children with a deformity or contracture had postural asymmetries in both sitting and supine positions; 10.5% had scoliosis, 8.7% windswept hips, 6.6% hip flexion and 19.2% knee contractures. Severe postural asymmetries increased the likelihood for scoliosis 9 times, for windswept hips 6 to 9 times, and for hip and knee flexion contractures 7 and 12 times respectively, adjusted for age, sex and GMFCS level. Hip flexion contractures and windswept hips increased the likelihood for pain by 1.5-1.6 times. CONCLUSION: The likelihood of having scoliosis, windswept hips and flexion contractures in the hips and knees increased if the child had postural asymmetries, and for increased age and higher GMFCS levels. Efforts should focus on preventing postural asymmetries from occurring or progressing, and on increasing the child's ability to change position. Reducing postural asymmetries may also reduce the likelihood of pain.Implications for RehabilitationThe risk of having scoliosis, windswept hip deformity and flexion contractures in the hips and knees increased if the child had postural asymmetries in sitting or lying.Efforts should focus on preventing or reducing postural asymmetries, and on increasing the child's ability to change position.Reducing postural asymmetries may also reduce the risk of pain.

ICF Core Sets for the assessment of functioning of adults with cerebral palsy.

AIM: To report on the results of the online international consensus process to develop the comprehensive and brief International Classification of Functioning, Disability and Health (ICF) Core Sets for adults with cerebral palsy (CP). METHOD: An online iterative decision-making and consensus process involved 25 experts, including clinicians and researchers working with adults with CP, an adult with CP, and the parents of adults with CP from all six regions of the World Health Organization. The most relevant categories were selected from a list of 154 unique second-level candidate categories to develop the ICF Core Sets for adults with CP. This list resulted from evidence gathered during four preparatory studies, that is, a systematic literature review, a qualitative study, an expert survey, and an empirical study. RESULTS: The consensus process resulted in the comprehensive ICF Core Set containing 120 second-level ICF categories: 33 body functions; eight body structures; 50 activities and participation; and 29 environmental factors, from which the most essential categories, 33 in total, were selected for the brief ICF Core Set. For body functions, most of the categories were mental functions and neuromusculoskeletal and movement-related functions. Body structures were mostly related to movement. All the chapters of the activities and participation component were represented, with mobility and self-care as the most frequently covered chapters. For environmental factors, most of the categories addressed products and technology and services, systems, and policies. INTERPRETATION: The comprehensive and brief ICF Core Sets for adults with CP were created using a new online version of an established ICF Core Set consensus process. These Core Sets complement the age-specific ICF Core Sets for children and young people with CP and will promote standardized data collection worldwide.

Postural Asymmetries and Assistive Devices Used by Adults With Cerebral Palsy in Lying, Sitting, and Standing.

Purpose: To describe the use of assistive devices and postural asymmetries in lying, sitting and standing positions in adults with cerebral palsy, and to analyze postural asymmetries and any associations with their ability to maintain or change position and time in these positions. Methods: A cross-sectional study based on data from the Swedish Cerebral Palsy follow-up program of 1,547 adults aged 16-76 years, at Gross Motor Function Classification System (GMFCS) levels I (n = 330), II (n = 323), III (n = 235), IV (n = 298), and V (n = 361). Assistive devices such as wheelchairs, seating systems, adjustable beds, standing equipment and time in each position were reported. The Posture and Postural Ability Scale was used to identify asymmetries and rate the ability to maintain or change position. Binary logistic regression models were used to estimate odds ratios (OR) for postural asymmetries in supine, sitting and standing. Results: Assistive devices were used by 63% in sitting (range 5-100% GMFCS levels I-V), 42% in lying (4-92% levels I-V), and 32% in standing (2-70% levels II-V). Wheelchairs were used as seating systems by 57%. Most adults had postural asymmetries in supine (75%; range 35-100% levels I-V), sitting (81%; 50-99% levels I-V) and standing (88%; 65-100% levels I-V). Men were more likely than women to have postural asymmetries, and the likelihood of postural asymmetries increased with age, GMFCS levels and inability to change position. Inability to maintain position increased the probability of postural asymmetries in all positions from OR 2.6 in standing to OR 8.2 in lying and OR 13.1 in sitting. Conclusions: Almost twice as many adults used assistive devices in sitting than in lying or standing. Two thirds of the adults who used standing devices used it for <1 h per day, indicating that they might spend the remaining 23 out of 24 h per day either sitting or lying. Asymmetric postures were frequent across all ages and were highly associated with inability to change or maintain position.

Living Conditions and Social Outcomes in Adults With Cerebral Palsy.

Objectives: To analyse the living conditions and social outcomes (housing, engagement in employment or higher education, access to personal assistance and having a partner) in adults with cerebral palsy (CP) relative to their age, sex, communication ability, and motor skills. Methods: Cross-sectional registry-based study of 1,888 adults (1,030 males/858 females) with CP in the Swedish CP follow-up programme, median age 25 years (range 16-78 y). Type of housing, occupation, access to personal assistance and having a partner were analysed relative to their age, sex, and the classification systems for Gross Motor Function (GMFCS) and Communication Function (CFCS). Binary logistic regression models were used to calculate odds ratios (OR) for independent living, competitive employment, and having a partner. Results: Most of the 25- to 29-year olds (55.6%) lived independently, increasing to 72.4% in 40- to 49-year olds, while the majority (91.3%) of those under 20 years lived with their parents. Independent living was almost equal in adults at GMFCS levels I (40.2%) and V (38.6%). This parity was explained by access to personal assistance, which increased with higher GMFCS and CFCS levels. Personal assistance of >160 hours/week was associated with a high probability of independent living (OR 57). In the age span 20-64 years, 17.5% had competitive employment and 45.2% attended activity centres for people with intellectual disabilities. In the younger age group up to 24 years old, 36.9% went to mainstream/higher education and 20.5% went to special schools. In total, 13.4% had a partner and 7.8% lived together. Slightly more women than men had a partner, and most individuals were classified at CFCS level I. Conclusion: Only one in eight adults with CP has a partner, and one in six has competitive employment. Access to personal assistance is the single most important factor for independent living. It is vital to support adults with CP throughout their lifespan to achieve the best possible outcomes in all aspects of life.

Systematic Monitoring of Cognition for Adults With Cerebral Palsy-The Rationale Behind the Development of the CPCog-Adult Follow-Up Protocol.

Cerebral palsy (CP) comprises a heterogeneous group of conditions recognized by disturbances of movement and posture and is caused by a non-progressive injury to the developing brain. Birth prevalence of CP is about 2-2.5 per 1,000 live births. Although the motor impairment is the hallmark of the diagnosis, individuals with CP often have other impairments, including cognitive ones. Cognitive impairments may affect communication, education, vocational opportunities, participation, and mental health. For many years, CP has been considered a "childhood disability," but the challenges continue through the life course, and health issues may worsen and new challenges may arise with age. This is particularly true for cognitive impairments, which may become more pronounced as the demands of life increase. For individuals with CP, there is no one-to-one correlation between cognition and functioning in other areas, and therefore, cognition must be individually assessed to determine what targeted interventions might be beneficial. To facilitate this for children with CP, a systematic follow-up protocol of cognition, the CPCog, has been implemented in Norway and Sweden. However, no such protocol currently exists for adults with CP. Such discontinuity in healthcare services that results from lack of follow-up of cognitive functioning and subsequent needs for adjustments and interventions makes transition from pediatric to adult healthcare services challenging. As a result, a protocol for the surveillance of cognition in adults with CP, the CPCog-Adult, has been developed. It includes assessment of verbal skills, non-verbal reasoning, visual-spatial perception, and executive functioning. It is recommended to perform these assessments at least once in young adulthood and once in the mid-fifties. This report describes the process of developing the CPCog-Adult, which has a three-fold purpose: (1) to provide equal access to healthcare services to enable the detection of cognitive impairments; (2) to provide interventions that increase educational and vocational participation, enhance quality of life, and prevent secondary impairments; and (3) to collect systematic data for research purposes. The consent-based registration of data in the well-established Swedish and Norwegian national CP registries will secure longitudinal data from childhood into adulthood.

Interrater reliability for unilateral and bilateral tests to measure the popliteal angle in children and youth with cerebral palsy.

BACKGROUND: Short hamstring muscles can cause several problems for children with cerebral palsy. The results of the clinical measurement of hamstring length are often used in decision-making about treatment of children with cerebral palsy. There are different ways of performing this measurement. The aim of this study was to evaluate the interrater reliability of the unilateral and bilateral measurement of the popliteal angle in children and youth with cerebral palsy. METHODS: Two methods for estimating hamstring length using unilateral and bilateral measurements of the popliteal angle were applied in children with cerebral palsy. Both tests were applied bilaterally by two independent examiners on the same day for each child. The intraclass correlation coefficient (ICC) was calculated to evaluate the interrater reliability of both measurements. Seventy young people with cerebral palsy (32 females, 38 males, mean age 10 years 8 months, range 5-22 years) at Gross Motor Function Classification System levels I (n = 17), II (n = 31), III (n = 12) and IV (n = 10) were included. RESULTS: The interrater reliability was good for both measurements. The ICC values were 0.80 on the right and 0.86 on the left for the unilateral popliteal angle, and 0.82 on the right and 0.83 on the left for the bilateral popliteal angle. CONCLUSIONS: Both unilateral and bilateral measurement of the popliteal angle is a reliable method for estimating hamstring length in children and youth with cerebral palsy.

Pain in adults with cerebral palsy: A systematic review and meta-analysis of individual participant data.

BACKGROUND: There is little focus on adults with cerebral palsy (CP) in research and health care and insufficient knowledge on how to identify and manage pain in this population. OBJECTIVES: This systematic review and meta-analysis aimed to determine whether pain prevalence in adults with CP is high and to explore variations in pain prevalence of subgroups, pain locations, pain severity and pain interference. METHODS: Potential datasets were identified by experts in the field and literature searches in Embase, MEDLINE, and Cochrane, from January 2000 to October 2016. Included studies had a representative sample of ≥25 adults with CP and ≥1 pain outcomes. Methodological quality assessment, pain prevalence estimates and logistic regression models for subgroup effects on pain prevalence were conducted. RESULTS: In total, 17 eligible studies were identified from 4584 publications. A meta-analysis was performed with individual participant data from 15 studies totalling 1243 participants (mean [SD] age 34.3 [12.6] years). Overall mean pain prevalence was 70% (95% CI 62-78). Women were more likely to have pain than men (P<0.001). The odds of pain was increased in adults with gross motor function level II (odds ratio [OR] 1.92, 95% CI 1.22-3.12) and IV (OR 1.77, 95% CI 1.03-4.29). Participants with pain reported pain predominantly in the legs (76%, 95% CI 66-84), and mean pain severity was 3.7/10 (95% CI 2.7-4.7) and pain interference 3.5/10 (95% CI 2.5-4.5). CONCLUSIONS: This meta-analysis provides the first reliable pain prevalence estimate in a large international sample of adults with CP. The high prevalence of pain, 70%, suggests that adults with CP should be routinely screened for pain and treated accordingly. The range of measurement instruments used by the included studies emphasizes using common outcome measures specific to pain internationally.

Prevalence of pain and interference with daily activities and sleep in adults with cerebral palsy.

AIM: To analyse the prevalence of pain, pain sites, pain severity, and pain interfering with work or daily activities and sleep in adults with cerebral palsy (CP). METHOD: This was a cross-sectional study based on data from 1591 adults (16-76y, median age 25y; 879 males, 712 females; Communication Function Classification System [CFCS] levels I-V) in the Swedish Cerebral Palsy Follow-up Program. Pain severity was rated for several body sites and pain interference with activities/work and sleep was also evaluated. Logistic regression was used to estimate the odds ratios (ORs) of the factors associated with the prevalence of pain and pain interfering with activities/work or sleep. RESULTS: Pain was reported in 1059 of 1591 adults; a higher proportion self-reported pain (69.9%) compared to proxy-reported pain (62.4%). More adults classified in CFCS level I (72.5%) reported pain compared to those in CFCS levels II to V (56.5-64.9%). Adults with severe/very severe pain had a sixfold risk of pain interfering with activity/work (OR=6.68; 95% CI 4.99-8.96) and sleep (OR=6.60; 95% CI 4.84-8.98). INTERPRETATION: Two-thirds of adults with CP experienced pain, which is likely to be underreported in individuals who do not communicate efficiently or rely on proxy reports. Pain strongly interfered with activities and sleep; thus, it must be assessed and treated more effectively.

Knee and foot contracture occur earliest in children with cerebral palsy: a longitudinal analysis of 2,693 children.

Background and purpose - Joint contracture is a common problem among children with cerebral palsy (CP). To prevent severe contracture and its effects on adjacent joints, it is crucial to identify children with a reduced range of motion (ROM) early. We examined whether significant hip, knee, or foot contracture occurs earliest in children with CP.Patients and methods - This was a longitudinal study involving 27,230 measurements obtained for 2,693 children (59% boys, 41% girls) with CP born 1990 to 2018 and registered before 5 years of age in the Swedish surveillance program for CP. The analysis was based on 4,751 legs followed up for an average of 5.0 years. Separate Kaplan-Meier (KM) curves were drawn for each ROM to illustrate the proportions of contracture-free legs at a given time during the follow-up. Using a clustered bootstrap method and considering the child as the unit of clustering, 95% pointwise confidence intervals were generated for equally spaced time points every 2.5 years for each KM curve.Results - Contracture developed in 34% of all legs, and the median time to the first contracture was 10 years from the first examination. Contracture was most common in children with a higher Gross Motor Function Classification System (GMFCS) level. The first contracture was a flexion contracture preventing dorsiflexion in children with GMFCS level I or II and preventing knee extension in children with GMFCS level III to V.Interpretation - Early interventions to prevent knee and foot contractures in children with CP should be considered.