Pressure injuries are common in children with myelomeningocele: Results from a follow-up programme and register.

AIM: To investigate the occurrence of pressure injuries (PIs) in children with myelomeningocele (MMC) and to investigate the association between PIs and orthoses use by disability-specific variables. METHODS: Population-based registry study including participants in the Swedish multidisciplinary follow-up programme for MMC. Risks of PIs were investigated by birth cohort, country of birth, sex, type of MMC, muscle function level (MFL), and continence status. RESULTS: Of 180 participants, 29% had PIs recorded. Of the 132 participants with >1 assessment records, 17.4% reported multiple PI occasions. More assessments increased the likelihood of PIs (Odds Ratio [OR] = 1.33, 95% CI 1.15-1.54) and participants born 2015-2018 had a lower OR of PIs than those born 2007-2010 (OR = 0.08, 95% CI = 0.01-0.74). Those at MFL I had lower OR of PIs than those at MFL V (OR = 0.06, 95% CI 0.01-0.64). Of the 73 participants with orthoses on the lower extremities, 47% reported skin irritations/injuries in the last 4 weeks; 30% reported that it made them stop using orthoses. CONCLUSION: Pressure injuries are common even in young children with MMC. Many have recurring skin irritations. Inspecting for PIs should be part of a daily routine and tools to increase compliance are needed.

No support that early selective dorsal rhizotomy increase frequency of scoliosis and spinal pain - a longitudinal population-based register study from four to 25 years of age.

Spasticity interfering with gross motor development in cerebral palsy (CP) can be reduced with selective dorsal rhizotomy (SDR). Although reported, it is unknown if SDR surgery causes later spine problems. Using CP-registry data from a geographically defined population, the objectives were to compare frequency and time to scoliosis, and spinal pain up to adult age after SDR-surgery or not in all with same medical history, functional abilities, CP-subtype and level of spasticity at 4 years of age. Variables associated with scoliosis at 20 years of age were explored. METHOD: In the total population with CP spastic diplegia in Skåne and Blekinge, born 1990-2006, 149 individuals had moderate to severe spasticity and no medical contraindications against SDR at 4 years of age and were included; 36 had undergone SDR at a median age of 4.0 years (range 2.5-6.6 years), and 113 had not. Frequency of scoliosis and age when scoliosis was identified, and frequency of spinal pain at 10, 15, 20 and 25 years of age were analysed using Kaplan-Meier survival curves and Fisher's exact test. Multivariable logistic regression was performed to identify variables to explain scoliosis at 20 years of age. Gross Motor Function Classification System (GMFCS) levels at 4 years of age were used for stratification. RESULT: Frequency of scoliosis did not significantly differ between groups having had early SDR surgery or not. In GMFCS IV, the SDR group had later onset and lower occurrence of scoliosis (p = 0.004). Frequency of spinal pain did not differ between the groups (p- levels > 0.28). GMFCS level was the background variable that in the logistic regression explained scoliosis at 20 years of age. CONCLUSION: Frequency of back pain and scoliosis in adulthood after early SDR are mainly part of the natural development with age, and not a surgery complication.

Associations between antenatal and perinatal risk factors and cerebral palsy: a Swedish cohort study.

OBJECTIVES: To investigate known and suggested risk factors associated with cerebral palsy in a Swedish birth cohort, stratified by gestational age. SETTING: Information on all births between 1995 and 2014 in Skåne, the southernmost region in Sweden, was extracted from the national birth register. PARTICIPANTS: The cohort comprised a total of 215 217 children. Information on confirmed cerebral palsy and subtype was collected from the national quality register for cerebral palsy (Cerebral Palsy Follow-up Surveillance Programme). PRIMARY AND SECONDARY OUTCOME MEASURES: We calculated the prevalence of risk factors suggested to be associated with cerebral palsy and used logistic regression models to investigate the associations between potential risk factors and cerebral palsy. All analyses were stratified by gestational age; term (≥37 weeks), moderately or late preterm (32-36 weeks) and very preterm (<32 weeks). RESULTS: In all, 381 (0.2 %) children were assigned a cerebral palsy diagnosis. Among term children, maternal preobesity/obesity, small for gestational age, malformations, induction, elective and emergency caesarian section, Apgar <7 at 5 min and admission to neonatal care were significantly associated with cerebral palsy (all p values<0.05). Among children born moderately or late preterm, small for gestational age, malformations, elective and emergency caesarian section and admission to neonatal care were all associated with cerebral palsy (all p values <0.05), whereas among children born very preterm no factors were significantly associated with the outcome (all p values>0.05). CONCLUSION: Our results support and strengthen previous findings on factors associated with cerebral palsy. The complete lack of significant associations among children born very preterm probably depends on to the small number of children with cerebral palsy in this group.

Improving the Health of Individuals With Cerebral Palsy: Protocol for the Multidisciplinary Research Program MOVING ON WITH CP.

BACKGROUND: Cerebral palsy (CP) is one of the most common early onset disabilities globally. The causative brain damage in CP is nonprogressive, yet secondary conditions develop and worsen over time. Individuals with CP in Sweden and most of the Nordic countries are systematically followed in the national registry and follow-up program entitled the Cerebral Palsy Follow-Up Program (CPUP). CPUP has improved certain aspects of health care for individuals with CP and strengthened collaboration among professionals. However, there are still issues to resolve regarding health care for this specific population. OBJECTIVE: The overall objectives of the research program MOVING ON WITH CP are to (1) improve the health care processes and delivery models; (2) develop, implement, and evaluate real-life solutions for Swedish health care provision; and (3) evaluate existing health care and social insurance benefit programs and processes in the context of CP. METHODS: MOVING ON WITH CP comprises 9 projects within 3 themes. Evaluation of Existing Health Care (Theme A) consists of registry studies where data from CPUP will be merged with national official health databases, complemented by survey and interview data. In Equality in Health Care and Social Insurance (Theme B), mixed methods studies and registry studies will be complemented with focus group interviews to inform the development of new processes to apply for benefits. In New Solutions and Processes in Health Care Provision (Theme C), an eHealth (electronic health) procedure will be developed and tested to facilitate access to specialized health care, and equipment that improves the assessment of movement activity in individuals with CP will be developed. RESULTS: The individual projects are currently being planned and will begin shortly. Feedback from users has been integrated. Ethics board approvals have been obtained. CONCLUSIONS: In this 6-year multidisciplinary program, professionals from the fields of medicine, social sciences, health sciences, and engineering, in collaboration with individuals with CP and their families, will evaluate existing health care, create conditions for a more equal health care, and develop new technologies to improve the health care management of people with CP. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/13883.

[Refugee/immigrant children with cerebral palsy in the Swedish health care organization]. / Ökad inflyttning av barn med cerebral pares - Likvärdig behandling har getts till utrikes och inrikes födda.

Cerebral palsy (CP) is present in about 200 children per birth-year cohort in Sweden. From 2001 to 2016, the annual number of immigrants to Sweden with CP enrolled at the (re)habilitation services increased from less than ten to 40-90 individuals per year; about 70 % came to Sweden as refugees. At a group level, children with CP born abroad had greater functional impairment than children born in Sweden, based on information in the Swedish national surveillance program and health care quality register for CP (CPUP). There was a significantly higher prevalence of CP, a greater proportion of children with bilateral spastic CP, and a lower proportion with unilateral spastic CP among the immigrants. The proportion of children in each gross motor function level treated with orthoses, standing frames, spinal brace or botulinum toxin was the same regardless of whether the child was born in Sweden or abroad. In summary, the (re)habilitation services and orthopedics have managed to provide a relatively large group of immigrants/refugees with CP with equal treatment compared to children born in Sweden.

Diagnosis and management of individuals with Fetal Valproate Spectrum Disorder; a consensus statement from the European Reference Network for Congenital Malformations and Intellectual Disability.

BACKGROUND: A pattern of major and minor congenital anomalies, facial dysmorphic features, and neurodevelopmental difficulties, including cognitive and social impairments has been reported in some children exposed to sodium valproate (VPA) during pregnancy. Recognition of the increased risks of in utero exposure to VPA for congenital malformations, and for the neurodevelopmental effects in particular, has taken many years but these are now acknowledged following the publication of the outcomes of several prospective studies and registries. As with other teratogens, exposure to VPA can have variable effects, ranging from a characteristic pattern of major malformations and significant intellectual disability to the other end of the continuum, characterised by facial dysmorphism which is often difficult to discern and a more moderate effect on neurodevelopment and general health. It has become clear that some individuals with FVSD have complex needs requiring multidisciplinary care but information regarding management is currently lacking in the medical literature. METHODS: An expert group was convened by ERN-ITHACA, the European Reference Network for Congenital Malformations and Intellectual Disability comprised of professionals involved in the care of individuals with FVSD and with patient representation. Review of published and unpublished literature concerning management of FVSD was undertaken and the level of evidence from these sources graded. Management recommendations were made based on strength of evidence and consensus expert opinion, in the setting of an expert consensus meeting. These were then refined using an iterative process and wider consultation. RESULTS: Whilst there was strong evidence regarding the increase in risk for major congenital malformations and neurodevelopmental difficulties there was a lack of high level evidence in other areas and in particular in terms of optimal clinical management.. The expert consensus approach facilitated the formulation of management recommendations, based on literature evidence and best practice. The outcome of the review and group discussions leads us to propose the term Fetal Valproate Spectrum Disorder (FVSD) as we feel this better encompasses the broad range of effects seen following VPA exposure in utero. CONCLUSION: The expert consensus approach can be used to define the best available clinical guidance for the diagnosis and management of rare disorders such as FVSD. FVSD can have medical, developmental and neuropsychological impacts with life-long consequences and affected individuals benefit from the input of a number of different health professionals.

Pain and health status in adults with myelomeningocele living in Sweden.

PURPOSE: To increase knowledge about pain and general health in adults with myelomeningocele, a health condition with several risk factors for pain such as musculoskeletal deformities, shunt dysfunctions, bowel problems, and urinary tract infections/stones. METHODS: Descriptive correlational pilot study (N= 51, 53% males). Chi-square tests were used to test associations among presence, impact, severity, and pain site in relation to sex and age. ANOVA was used to analyze associations between sex, age, and general health (today). RESULTS: Seventy-three percent reported pain in the past four weeks. No significant sex or age differences were associated with the presence of pain. Women were significantly more likely to report that pain interfered with work, χ2(1, N= 41) = 5.53, p= 0.02. There were significant main effects for sex and age on general health (today), F(2, 44) = 5.63, p= 0.007, adjusted R2= 0.17. Women scored lower on general health (today) (mean = 63.58) than men (mean = 76.33). Older individuals reported worse general health (today) than did younger (B=-0.89, t=-2.79, p= 0.008). CONCLUSIONS: Pain was frequent, and pain sites differed widely. Women were more likely to report that pain interfered with work, and scored lower on health, as did older persons.

[Therapeutic cooling is associated with better function in children with cerebral palsy due to birth asphyxia according to the national health care quality registry CPUP]. / Kylbehandling efter förlossnings­asfyxi minskar skadeutveckling - Barn med cerebral pares får bättre funktion, visar retrospektiv genomgång i kvalitetsregistret CPUP.

Hypothermic treatment after birth asphyxia was introduced as a recommended practice in Sweden in 2007. CPUP is a national quality register and surveillance program that encompasses the total population of children with cerebral palsy (CP) in Sweden. In an analysis of CPUP data children with CP and asphyxia treated with cooling were compared to children with CP and asphyxia who were not cooled. A lower proportion of severe motor and cognitive impairments were observed in the group that did receive the cooling/hypothermic treatment.

Ultrasound in Prenatal Diagnostics and Its Impact on the Epidemiology of Spina Bifida in a National Cohort from Denmark with a Comparison to Sweden.

OBJECTIVES: The aim of this study was to assess the incidence, the prenatal detection rate by ultrasound, and the pregnancy outcome of spina bifida (SB) in Denmark (DK) in 2008-2015 and to compare results to national data from Sweden. METHODS: Data were retrieved from the Danish Fetal Medicine Database, which includes International Classification of Diseases- (ICD-) 10 codes for pre- or postnatally diagnoses and pregnancy outcome. Missing data were obtained from the National Patient Register. Livebirth data with myelomeningocele (MMC) in Sweden were obtained from different databases. RESULTS: There were 234 cases with SB in DK in 2008-2015. The incidence of SB was 4.9 : 10,000; 89% were detected with ultrasound prior to week 22; 90% of these pregnancies were terminated (ToP); 91% were isolated malformations of which 11% showed abnormal karyotype. The incidence of newborns with MMC was 1.3 : 10,000 in Sweden. CONCLUSIONS: Ultrasound screening has a major impact on the epidemiology of SB. The prenatal detection rate of SB was high, and most SB cases were isolated and had a normal karyotype. Among women with a prenatal fetal diagnosis of SB, 90% chose to have ToP. The incidence of newborns with SB was higher in Sweden than in DK.

Assessments of pain in children and adolescents with cerebral palsy: a retrospective population-based registry study.

AIM: To explore pain screening in CPUP, a follow-up surveillance programme for people with cerebral palsy (CP), specifically to describe reported pain prevalence, localizations, patterns of distribution; to compare with studies using psychometrically sound assessment instruments; and to assess agreement between pain documented in CPUP and medical records. METHOD: Registry study of a population with CP, born 1993 to 2008, living in Skåne, Sweden in 2013. Descriptive data, cross-tabulations, and chi-square tests to characterize and compare the study groups. Kappa analysis to test the concordance between register and medical record reports on pain. RESULTS: Pain was reported by 185 out of 497 children (37%; females 40%, males 35%). Level V in both Gross Motor Function Classification System (GMFCS) and Manual Ability Classification System (MACS) was associated with highest prevalence of pain (50% and 54%), and level I with lowest prevalence of pain (30% and 32%). Pain was most frequent in dyskinetic CP (46%) and least frequent in unilateral spastic CP (33%). Feet and knees were the dominant localizations. Fair-moderate agreement (kappa 0.37, prevalence-adjusted bias-adjusted kappa [PABAK] 0.44) was found between documented pain in CPUP and medical records, although more seldom recognized in medical records. INTERPRETATION: The distribution of pain between CP subtypes, functional levels, sex, and age in CPUP is concordant with previous population-based studies, indicating the validity of the CPUP pain screening. Despite this, further clinical evaluation with extended pain assessments and pain management were largely neglected in children reporting chronic pain.

Stability of the Gross Motor Function Classification System in children and adolescents with cerebral palsy: a retrospective cohort registry study.

AIM: To investigate the stability and to determine factors that affect change in the Gross Motor Function Classification System (GMFCS) in a sample from the total population with cerebral palsy (CP) in two regions of Sweden. METHOD: Retrospective cohort registry study based on the follow-up programme for CP. Children with CP and a minimum of two GMFCS ratings were included. Subtype, sex, ages at GMFCS ratings, time between ratings, number of ratings, assessor change, and birth cohort were analysed in relation to initial GMFCS levels, with descriptive statistics and logistic regression models. RESULTS: Ninety-three per cent (n=736) of children with CP born between 1990 and 2007 were included, resulting in 7922 assessments between 1995 and 2014. Fifty-six per cent of the children received the same GMFCS rating at all assessments, with a median of 11 individual GMFCS ratings (range 2-21) and a median of three different assessors (range 1-10). Changes were often transient; downward change (higher performance) was more likely in GMFCS levels II and III than in the other levels. The probability of upward change (lower performance) was lowest in unilateral spastic CP. INTERPRETATION: The results support the stability of the GMFCS shown previously and add new information on the properties of the classification.

A combined surveillance program and quality register improves management of childhood disability.

PURPOSE: To describe a concept for prevention of secondary conditions in individuals with chronic neuromuscular disabilities by using two Swedish developed follow-up-programmes for cerebral palsy (CP; CPUP) and myelomeningocele (MMC; MMCUP) respectively as examples. METHOD: This paper describes and outlines the rationale, development and implementation of CPUP and MMCUP. RESULTS: Both programmes are multidisciplinary longitudinal follow-up programmes that simultaneously serve as national registries. The programmes are population-based and set in Swedish habilitation clinics. Most children (95%) born 2000 or later with CP are enrolled in CPUP and the recruitment of adults is underway. CPUP has also been implemented in Norway, Denmark, Iceland, Scotland and parts of Australia. In MMCUP, almost all children with MMC born 2007 or later participate and individuals of all ages are now invited. The registries provide epidemiological profiles associated with CP and MMC and platforms for population-based research and quality of care improvement. CONCLUSIONS: Through multidisciplinary follow-up and early detection of emerging complications individuals with CP or MMC can receive less complex and more effective interventions than if treatment is implemented at a later stage. Possibilities and challenges to design, implement and continuously run multidisciplinary secondary prevention follow-up programmes and quality registries for individuals with CP or MMC are described and discussed. Implications for rehabilitation Individuals with disabilities such as cerebral palsy or myelomeningocele are at risk of developing secondary conditions. Multidisciplinary population-based longitudinal follow-up programmes seem effective in preventing certain types of secondary conditions.

Participation in physical activities for children with cerebral palsy: feasibility and effectiveness of physical activity on prescription.

BACKGROUND: Children with cerebral palsy (CP) are less physically active and more sedentary than other children which implies risk factors for their physical and mental health. Physical activity on prescription (PAP) is an effective intervention to promote a lifestyle change towards increased physical activity in adults in general. Knowledge is lacking about the use of PAP in children with CP. Therefore, the aim of this study was to evaluate the feasibility of PAP for children with CP and its effectiveness on participation in physical activity and sedentary behaviour. METHODS: Eleven children with CP, aged 7-11 years, participated in PAP, consisting of a written agreement between each child, their parents and the physiotherapist and based on Motivational Interviewing (MI), Canadian Occupational Performance Measure (COPM) and Goal Attainment Scaling (GAS). Individual goals, gross motor function and physical activity were assessed at baseline, at 8 and/or 11 months using COPM, GAS, logbooks, Gross Motor Function Measure (GMFM-66), physical activity questionnaires, physical activity and heart rate monitors and time-use diaries. At 8 and 11 months the feasibility of the intervention and costs and time spent for the families and the physiotherapist were evaluated by questionnaires. RESULTS: The intervention was feasible according to the feasibility questionnaire. Each child participated in 1-3 self-selected physical activities during 3-6 months with support from the physiotherapist, and clinically meaningful increases from baseline of COPM and GAS scores were recorded. Being physically active at moderate-vigorous levels varied between less than 30 and more than 240 minutes/day, and the median for the whole group was 84 minutes/day at baseline and 106 minutes/day at 8 months. CONCLUSIONS: The intervention PAP seems to be feasible and effective for children with CP, involving both every day and organised physical activities to promote an active lifestyle through increased participation, motivation, and engagement in physical activities. Further research of PAP is needed, preferably in a long term randomised controlled trial and including health economic analysis to show costs and benefits. TRIAL REGISTRATION: ISRCTN76366356, retrospectively registered.

Functional performance in self-care and mobility after selective dorsal rhizotomy: a 10-year practice-based follow-up study.

AIM: To explore changes in performance in daily activities (self-care and mobility) 10 years after selective dorsal rhizotomy (SDR). METHOD: Twenty-four children with bilateral spastic cerebral palsy were followed; the median age at SDR was 4 years 1 month (range 2y 5mo-6y 4mo) and at 10-year follow-up was 14 years 6 months (range 12y 3mo-16y 9mo). The preoperative Gross Motor Function Classification System (GMFCS) levels were: I (n=1), II (n=7), III (n=4), IV (n=11), and V (n=1). The Pediatric Evaluation of Disability Inventory (PEDI) was used to assess performance in functional skills, caregiver assistance, and frequency of modifications and adaptive equipment (MAE) in self-care and mobility domains. Changes were analysed in relation to preoperative GMFCS levels, PEDI scores, and age at operation. RESULTS: All scores improved significantly (p<0.01) during the first 5 years in patients assigned to GMFCS levels I-III and IV-V. Between 5 years and 10 years, changes were seen in patients grouped in GMFCS levels I-III in the functional skills, mobility (p=0.04), caregiver assistance self-care (p=0.03), and caregiver assistance mobility (p=0.03) domains. Those grouped in GMFCS levels IV-V showed small changes between 5 years and 10 years after surgery. Changes were dependent on the preoperative GMFCS levels in all domains; caregiver assistance, self-care and mobility changes were dependent on preoperative values. The use of MAE increased in participants in GMFCS levels IV-V. INTERPRETATION: Children who underwent SDR and physiotherapy improved in functional performance in self-care and mobility and were more independent 10 years postoperatively.

Follow-up of individuals with cerebral palsy through the transition years and description of adult life: the Swedish experience.

OBJECTIVE: To describe the process of providing healthcare through the transition years to individuals with cerebral palsy (CP) and to present data on living arrangements, education/occupation status, and use of personal assistance in young Swedish adults with CP. METHODS: A descriptive cross-sectional study of 102 participants (63 males) participating in a standardized follow-up program called CPUP. Data were analyzed in relation to the Gross Motor Function Classification System (GMFCS) and the Manual Ability Classification System (MACS). RESULTS: Of the participants, 58 "lived with parents", 29 reported "independent living", and 15 reported "special service housing". Living arrangements differed among GMFCS levels (p< 0.001) and 14 of 20 with severe disabilities lived with their parents. Thirty-four of 70 reported personal assistance; use of assistance correlated (p< 0.001) with GMFCS (r(s) =0.71) and MACS (r(s) = 0.70). Thirty five were "students", 20 "employed", 36 in "daily activities", and 9 were "unemployed". Of those employed, 18 had GMFCS levels I-II. CONCLUSION: Some young adults with CP and severe functional limitations manage independent living - however, many still live with their parents. Although many are students, a large number are unemployed. There is disconnect between the pediatric and adult healthcare systems. CPUP may facilitate in making the transition smoother.

Postural asymmetries in young adults with cerebral palsy.

AIM: The purpose was to describe posture, ability to change position, and association between posture and contractures, hip dislocation, scoliosis, and pain in young adults with cerebral palsy (CP). METHODS: Cross-sectional data of 102 people (63 males, 39 females; age range 19-23 y, median 21 y) out of a total population with CP was analysed in relation to Gross Motor Function Classification System (GMFCS) levels I (n=38), II (n=21), III (n=13), IV (n=10), and V (n=20). The CP subtypes were unilateral spastic (n=26), bilateral spastic (n=45), ataxic (n=12), and dyskinetic CP (n=19). The Postural Ability Scale was used to assess posture. The relationship between posture and joint range of motion, hip dislocation, scoliosis, and pain was analysed using logistic regression and Spearman's correlation. RESULTS: At GMFCS levels I to II, head and trunk asymmetries were most common; at GMFCS levels III to V postural asymmetries varied with position. The odds ratios (OR) for severe postural asymmetries were significantly higher for those with scoliosis (OR=33 sitting), limited hip extension (OR=39 supine), or limited knee extension (OR=37 standing). Postural asymmetries correlated to hip dislocations: supine (r(s) =0.48), sitting (r(s) =0.40), standing (r(s) =0.41), and inability to change position: supine (r(s) =0.60), sitting (r(s) =0.73), and standing (r(s) =0.64). CONCLUSIONS: Postural asymmetries were associated with scoliosis, hip dislocations, hip and knee contractures, and inability to change position.

Fractures in children with cerebral palsy: a total population study.

AIM: To analyse factors associated with fractures in children with cerebral palsy (CP) in different levels of Gross Motor Function Classification System (GMFCS). METHOD: This was an epidemiological retrospective study of a total population of 536 children (214 females, 322 males) with CP born between 1990 and 2005. CP type was unilateral spastic (n=159), bilateral spastic (n=225), ataxic (n=60), dyskinetic (n=80), and mixed type (n=12); 384 children were in Gross Motor Function Classification Scale (GMFCS) levels I-III and 152 children were in GMFCS levels IV-V. Data were collected for a 9-year period on sex, CP-type, GMFCS level, gastrostomy, height, weight, the use of a standing device, antiepileptic drug (AED) therapy, and fractures. RESULTS: The risk of fracture in the total population of children with CP was similar to that for typically developing children. The risk for fractures of those in GMFCS levels I-III was not significantly associated with any of the studied risk factors. The risk of fractures for those in GMFCS levels IV-V on AED therapy was a twofold increase (p=0.004). The risk for fractures without trauma in children with stunted growth (height for age <-3 SD) and those who did not use standing devices was significantly increased: adjusted incidence rate ratio (AIRR) 4.16 (p=0.011) and 3.66 (p=0.010) respectively. Results regarding gastrostomy feeding for those in GMFCS levels IV-V were conflicting: a gastrostomy was associated with a reduced risk of fractures with trauma, but with increased risk of fractures without trauma (AIRR 0.10, p=0.003 and 4.36, p=0.012) respectively. INTERPRETATION: Children in GMFCS levels I-III had a similar incidence and pattern for fractures as normally developing children. Those in GMFCS levels IV-V had stunted growth, often a sign of longstanding undernourishment, and were associated with an increased risk of fractures. Children using standing devices had a fourfold reduction of fractures without trauma. Regular loading exercises and early adequate nutritional intake could prevent fractures in severe CP.

Physical activity in a total population of children and adolescents with cerebral palsy.

The aims of this study were to describe the participation in physical activity of children with cerebral palsy (CP) at school and during leisure time and to identify characteristics associated with physical activity. The frequency of receiving physiotherapeutic interventions were described as a variable of interest. A total population of 364 children with verified CP aged 7-17 years living in the Skåne region in Sweden was studied using cross-sectional data from the CP follow-up programme (CPUP). Proportional odds ratios showed the most severe gross motor limitations Gross Motor Function Classification System Expanded and Revised (GMFCS-E&R) to be a characteristic for low participation in physical education at school (PE) and GMFCS-E&R level III to be a characteristic for low participation in regular physical leisure activity. The age group of 7-11 years and obesity were characteristics associated with high participation in PE, whereas thinness was associated with low participation in regular physical leisure time activities. The highest proportion of children receiving physiotherapeutic interventions was found in GMFCS-E&R level III, while mental retardation, especially if moderate or severe, proved to be an independent characteristic associated with low frequency of physiotherapeutic interventions. Gender and epilepsy did not influence the odds for participation in physical activities. Special considerations are needed when planning interventions for increased physical activity in children with CP, as the individual prerequisites differ, even among children with the same gross motor function level according to the GMFCS-E&R.

Motor function after selective dorsal rhizotomy: a 10-year practice-based follow-up study.

AIM: The aim of this study was to explore changes in motor function up to 10 years after selective dorsal rhizotomy (SDR). METHOD: The participants comprised 29 children (20 males, nine females) with bilateral spastic diplegia who were consecutively operated on at a median age of 4 years and 3 months and followed until a median age of 15 years. SDR was combined with physiotherapy and regular follow-up visits. The distribution of preoperative Gross Motor Function Classification System (GMFCS) levels was as follows: I, n=1; II, n=7; III, n=8; IV, n=12; and V, n=1. Muscle tone in hip flexors, hip adductors, knee flexors, and plantar flexors was assessed with the modified Ashworth scale, passive range of motion in hip abduction, popliteal angle, maximum knee extension, dorsiflexion of the foot was measured with a goniometer, and gross motor function was assessed using the Gross Motor Function Measure (GMFM-66). The results were compared with preoperative values, taking into account age at the time of SDR. RESULTS: After 10 years, muscle tone in hip flexors, hip adductors, knee flexors and plantar flexors was normalized in 19, 24, 13 and 23 participants respectively; mean change in passive range of motion ranged from -2.0° to 8.6°, and the mean increase in GMFM-66 was 10.6. Changes in GMFM-66 were associated with preoperative GMFCS level and GMFM-66 scores. INTERPRETATION: Children who underwent SDR and physiotherapy and were regularly followed up by an experienced team showed improved gross motor function for up to 10 years postoperatively.

Scoliosis in a total population of children with cerebral palsy.

STUDY DESIGN: Epidemiological total population study based on a prospective follow-up cerebral palsy (CP) registry. OBJECTIVE: To describe the prevalence of scoliosis in a total population of children with CP, to analyze the relation between scoliosis, gross motor function, and CP subtype, and to describe the age at diagnosis of scoliosis. SUMMARY OF BACKGROUND DATA: Children with CP have an increased risk of developing scoliosis. The reported incidence varies, partly due to different definitions and study groups. Knowledge of the prevalence and characteristics of scoliosis in an unselected group of children with different CP types and levels of function is important for health care planning and for analyzing the risk in an individual child. METHODS: A total population of 666 children with CP, aged 4 to 18 years on January 1, 2008, followed with annual examinations in a health care program was analyzed. Gross Motor Function Classification System (GMFCS) level, CP subtype, age at clinical diagnosis of scoliosis, and the Cobb angle at the first radiographical examination were registered. RESULTS: Of the 666 children, 116 (17%) had mild and another 76 (11%) had moderate or severe scoliosis based on clinical examination. Radiographical examination showed a Cobb angle of more than 10° in 54 (8%) children and a Cobb angle of more than 20° in 45 (7%) children. The risk of developing scoliosis increased with GMFCS level and age. In most children, the scoliosis was diagnosed after 8 years of age. Children in GMFCS level IV or V had a 50% risk of having moderate or severe scoliosis by 18 years of age, whereas children in GMFCS level I or II had almost no risk. CONCLUSION: The incidence of scoliosis increased with GMFCS level and age. Observed variations related to CP subtype were confounded by the GMFCS, reflecting the different distribution of GMFCS levels in the subtypes. Follow-up programs for early detection of scoliosis should be based on the child's GMFCS level and age.