| 1. |
- Alriksson-Schmidt, Ann I, et al.
(författare)
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A combined surveillance program and quality register improves management of childhood disability
- 2017
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Ingår i: Disability and Rehabilitation. - : TAYLOR & FRANCIS LTD. - 0963-8288 .- 1464-5165. ; 39:8, s. 830-836
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Tidskriftsartikel (refereegranskat)abstract
- 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 rehabilitationIndividuals 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. 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.
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| 2. |
- Alriksson-Schmidt, Ann, et al.
(författare)
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Follow-up of individuals with cerebral palsy through the transition years and description of adult life : the Swedish experience.
- 2014
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Ingår i: Journal of pediatric rehabilitation medicine. - 1875-8894. ; 7:1, s. 53-61
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 3. |
- Alriksson-Schmidt, Ann, et al.
(författare)
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Improving the Health of Individuals With Cerebral Palsy: Protocol for the Multidisciplinary Research Program MOVING ON WITH CP
- 2019
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Ingår i: Jmir Research Protocols. - Toronto, Canada : JMIR Publications Inc.. - 1929-0748. ; 8:10
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 4. |
- Alriksson-Schmidt, Ann, et al.
(författare)
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Pain and health status in adults with myelomeningocele living in Sweden
- 2018
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Ingår i: Journal of Pediatric Rehabilitation Medicine. - 1874-5393. ; 11:4, s. 255-264
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Tidskriftsartikel (refereegranskat)abstract
- 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, ‡2(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.
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| 5. |
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| 6. |
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| 7. |
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| 8. |
- Andriesse, Hanneke, et al.
(författare)
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Motor ability in children treated for idiopathic clubfoot. A controlled pilot study
- 2009
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Ingår i: BMC Pediatrics. - : Springer Science and Business Media LLC. - 1471-2431. ; 9
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Tidskriftsartikel (refereegranskat)abstract
- Background: To study motor ability at seven years of age in children treated for idiopathic clubfoot and its relation to clubfoot laterality, foot status and the amount of surgery performed. Methods: Twenty children (mean age 7.5 years, SD 3.2 months) from a consecutive birth cohort from our hospital catchments area (300.000 inhabitants from southern Sweden) were assessed with the Movement Assessment Battery for Children (MABC) and the Clubfoot Assessment Protocol (CAP). Results: Compared to typically developing children an increased prevalence of motor impairment was found regarding both the total score for MABC (p < 0.05) and the subtest ABC-Ball skills (p < 0.05). No relationship was found between the child's actual foot status, laterality or the extent of foot surgery with the motor ability as measured with MABC. Only the CAP item "one-leg stand" correlated significantly with the MABC (rs = -0.53, p = 0.02). Conclusions: Children with idiopathic clubfoot appear to have an increased risk of motor activity limitations and it is possible that other factors, independent of the clinical status, might be involved. The ability to keep balance on one leg may be a sufficient tool for determining which children in the orthopedic setting should be more thoroughly evaluated regarding their neuromotor functioning.
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| 9. |
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| 10. |
- Arner, Marianne, et al.
(författare)
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CPUP - årsrapport 2007
- 2007
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Bok (populärvet., debatt m.m.)abstract
- Detta är den andra årsrapporten för CPUP (Uppföljningsprogram för cerebral pares) som nationellt kvalitetsregister.
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| 11. |
- Bjerre, I. M., et al.
(författare)
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Measure of Processes of Care (MPOC) applied to measure parent's perception of the habilitation process in Sweden.
- 2004
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Ingår i: Child: Care Health and Development. - : Wiley. - 1365-2214 .- 0305-1862. ; 30:2, s. 123-130
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Tidskriftsartikel (refereegranskat)abstract
- Aim To evaluate the instrument Measure of Processes of Care (MPOC) in a Swedish context. Methods The MPOC consists of 56 questions in the five scales: enabling and partnership; providing general information; providing specific information about the child; co-ordinated and comprehensive care; and respectful and supportive care. The questionnaire was translated into Swedish and distributed to 850 families, served by four habilitation centres. After two reminders, a response rate of 74.9% was obtained, and about 60% of the questionnaires qualified for further statistical analysis. Reliability, calculated as Cronbach's alpha, was high for four of the five scales and acceptable for the fifth (scale no. 3). Results Significant differences were shown between centres as well as between age groups. These differences were reasonable as judged through background knowledge, indicating that the instrument was able to discriminate between actual differences in services. Commenting on the practical use of the questionaire, staff, as well as responding parents, found the questionnaire rather long and some parents reported difficulties in giving answers as specific as the questionnaire asked them to. Conclusion The MPOC shows sufficient sensitivity to be used as an evaluation tool for services at a centre or program level, and can be recommended for research and practical use.
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| 12. |
- Bodin, Charlotte Rosenkrantz, et al.
(författare)
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Ultrasound in Prenatal Diagnostics and Its Impact on the Epidemiology of Spina Bifida in a National Cohort from Denmark with a Comparison to Sweden
- 2018
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Ingår i: BioMed Research International. - : Hindawi Limited. - 2314-6133 .- 2314-6141. ; 2018
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 13. |
- Bååth, Maria, et al.
(författare)
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MET Expression and Cancer Stem Cell Networks Impact Outcome in High-Grade Serous Ovarian Cancer
- 2021
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Ingår i: Genes. - : MDPI AG. - 2073-4425. ; 12:5
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Tidskriftsartikel (refereegranskat)abstract
- Overexpression of the receptor tyrosine kinase MET has been linked to poor survival in several cancer types, and MET has been suggested to interact with stem cell networks. In vitro studies have further suggested a possible benefit of a combined treatment using PARP and MET inhibitors. We used a tissue microarray (TMA) with 130 samples of advanced-stage high-grade serous fallopian tube/ovarian cancer (HGSC) to investigate the prognostic value of MET protein expression alone and in combination with the stem cell factor SOX2. The possible synergistic effects of a PARP and MET inhibitor treatment were evaluated in two cell lines with BRCA1 or BRCA2 deficiency and in their BRCA1/2-proficient counterparts. Patients with tumors positive for MET had worse overall survival (log-rank test, p = 0.015) compared to patients with MET-negative tumors. The prognostic role of MET was even more prominent in the subgroup of patients with SOX2-negative tumors (p = 0.0081). No synergistic effects of the combined treatment with PARP and MET inhibitors were found in the cell lines examined. We conclude that MET expression could be used as a marker for OS in HGSC and that stemness should be taken into consideration when evaluating the mechanisms of this effect.
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| 14. |
- Chounti, A., et al.
(författare)
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Sex differences in cerebral palsy incidence and functional ability: a total population study
- 2013
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Ingår i: Acta Pædiatrica. - : Wiley. - 1651-2227 .- 0803-5253. ; 102:7, s. 712-717
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Tidskriftsartikel (refereegranskat)abstract
- Aim To describe gender difference in a total population of children with cerebral palsy (CP), related to subtype, gross and fine motor function, and to compare CP incidence trends in girls and boys. Methods All 590 children with CP born in southern Sweden 1990-2005 were included. CP subtype was classified according to the Surveillance of Cerebral Palsy in Europe, gross motor function according to Gross Motor Function Classification System (GMFCS) and manual ability according to Manual Ability Classification System (MACS). Trends in CP incidence by birth year were analysed using Poisson regression modelling. Results There was a male predominance in all levels of GMFCS except level II, in all levels of MACS and in all CP subtypes except ataxic CP. There was no statistically significant difference between males and females regarding gross motor function or manual ability. The CP incidence trends in boys compared with girls did not change during the period 1990-2005. Conclusion No equalization was detected in the incidence of CP between girls and boys during recent years in this total population. We could not confirm any consistent sex difference in motor function levels. Male sex is a risk factor for CP.
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| 15. |
- Clayton-Smith, Jill, et al.
(författare)
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Diagnosis and management of individuals with Fetal Valproate Spectrum Disorder; A consensus statement from the European Reference Network for Congenital Malformations and Intellectual Disability
- 2019
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Ingår i: Orphanet Journal of Rare Diseases. - : Springer Science and Business Media LLC. - 1750-1172. ; 14:1
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 16. |
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| 17. |
- Hägglund, Gunnar, et al.
(författare)
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Prevention of dislocation of the hip in children with cerebral palsy : 20-year results of a population-based prevention programme.
- 2014
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Ingår i: The bone & joint journal. - 2049-4408. ; 96-B:11, s. 1546-52
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Tidskriftsartikel (refereegranskat)abstract
- In 1994 a cerebral palsy (CP) register and healthcare programme was established in southern Sweden with the primary aim of preventing dislocation of the hip in these children. The results from the first ten years were published in 2005 and showed a decrease in the incidence of dislocation of the hip, from 8% in a historical control group of 103 children born between 1990 and 1991 to 0.5% in a group of 258 children born between 1992 and 1997. These two cohorts have now been re-evaluated and an additional group of 431 children born between 1998 and 2007 has been added. By 1 January 2014, nine children in the control group, two in the first study group and none in the second study group had developed a dislocated hip (p < 0.001). The two children in the first study group who developed a dislocated hip were too unwell to undergo preventive surgery. Every child with a dislocated hip reported severe pain, at least periodically, and four underwent salvage surgery. Of the 689 children in the study groups, 91 (13%) underwent preventive surgery. A population-based hip surveillance programme enables the early identification and preventive treatment, which can result in a significantly lower incidence of dislocation of the hip in children with CP.
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| 18. |
- Hägglund, Gunnar, et al.
(författare)
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Prevention of dislocation of the hip in children with cerebral palsy. The first ten years of a population-based prevention programme.
- 2005
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Ingår i: Journal of Bone and Joint Surgery: British Volume. - 2044-5377. ; 87:1, s. 95-101
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Tidskriftsartikel (refereegranskat)abstract
- In 1994, a register for cerebral palsy and a health-care programme were started in southern Sweden with the aim of preventing dislocation of the hip in children with cerebral palsy. It involved all children with cerebral palsy born in 1992 or later. None of the 206 affected children born between 1992 and 1997 has developed a dislocation following the introduction of the prevention programme. Another 48 children moved into the area and none developed any further dislocation. Of the 251 children with cerebral palsy, aged between five and 11 years, living in the area on January 1, 2003, only two had a dislocated hip. One boy had moved into the area at age of nine with a dislocation and a girl whose parents chose not to participate in the programme developed bilateral dislocation. One boy, whose condition was considered to be too poor for preventative surgery, developed a painful dislocation of the hip at the age of five years and died three years later. Eight of 103 children in a control group, consisting of all children with cerebral palsy living in the area between 1994 and 2002, and born between 1990 and 1991, developed a dislocation of the hip before the age of six years. The decreased incidence of dislocation after the introduction of the prevention programme was significant (p < 0.001). Dislocation of the hip in cerebral palsy remains a serious problem, and prevention is important. Our screening programme and early intervention when lateral displacement of the femoral head was detected appear to be successful.
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| 19. |
- Hägglund, Gunnar, et al.
(författare)
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Prevention of severe contractures might replace multilevel surgery in cerebral palsy: results of a population-based health care programme and new techniques to reduce spasticity
- 2005
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Ingår i: Journal of Pediatric Orthopedics. Part B. - 1473-5865. ; 14:4, s. 269-273
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Tidskriftsartikel (refereegranskat)abstract
- During the 1990s three new techniques to reduce spasticity and dystonia in children with cerebral palsy (CP) were introduced in southern Sweden: selective dorsal rhizotomy, continuous intrathecal baclofen infusion and botulinum toxin treatment. In 1994 a CID register and a health care programme, aimed to prevent hip dislocation and severe contractures, were initiated in the area. The total population of children with CP born 1990-1991, 1992-1993 and 1994-1995 was evaluated and compared at 8 years of age. In non-ambulant children the passive range of motion in hip, knee and ankle improved significantly from the first to the later age groups. Ambulant children had similar range of motion in the three age groups, with almost no severe contractures. The proportion of children treated with orthopaedic surgery for contracture or skeletal torsion deformity decreased from 40 to 15% (P=0.0019). One-fifth of the children with spastic diplegia had been treated with selective dorsal rhizotomy. One-third of the children born 1994-1995 had been treated with botulinum toxin before 8 years of age. With early treatment of spasticity, early non-operative treatment of contracture and prevention of hip dislocation, the need for orthopaedic surgery for contracture or torsion deformity is reduced, and the need for multilevel procedures seems to be eliminated.
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| 20. |
- Josenby, Annika Lundkvist, et al.
(författare)
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MMCUP – a secondary prevention follow-up program in spina bifida and hydrocephalus.
- 2015
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Ingår i: Developmental Medicine & Child Neurology. - 0012-1622. ; 57:Suppl 4, s. 52-52
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Konferensbidrag (refereegranskat)abstract
- In persons born with myelomeningocele (MMC) secondaryprevention measures are important to survive and to retainfunction. Swedish guidelines in MMC have been developedand a follow-up programme is linked to a quality of care reg-istry, internet-based since 2012. The rationale for creation ofthis registry were to avoid complications in MMC by provid-ing a medical and health overview, facilitate the coordinationof services, improve quality of care, learn more about MMC,health and social care management. Professionals and patientsfill in internet-based registration forms. InterdisciplinaryMMCUP-teams in each of the six tertiary health care regionsin Sweden run the program. One team includes the registryholder to create, update and quality check the internet registryat a national registry competence centre, ERCSYD. 91 chil-dren born with MMC or lipo-MMC from 2007–2012 lived inSweden 1 Jan 2013, seven were born abroad. There were morefemales (n=50) than males among the 84 children born in Swe-den; total incidence 1.26/10000, 1/3 of the celes was closed. Ofthe prospectively reported children 1 Jan 2013 (n=86), two werenot operated on; the remaining 84 children, 4 months–5.9 yearsof age, had 302 operations, of which 202 neurosurgical. Updatedresults will be presented. An unselected total population bornwith MMC is followed, to date including about 100 children0–7 years of age. The high proportion of closed celes, and ahigher incidence in females in this population are preliminaryfindings that contrast to earlier studies.
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| 21. |
- Jöud, Anna, et al.
(författare)
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Associations between antenatal and perinatal risk factors and cerebral palsy : a Swedish cohort study
- 2020
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Ingår i: BMJ Open. - : BMJ. - 2044-6055. ; 10:8
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 22. |
- Lauruschkus, Katarina, et al.
(författare)
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Participation in physical activities forchildren with cerebral palsy : feasibility andeffectiveness of physical activity onprescription
- 2017
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Ingår i: Archives of Physiotherapy. - : Springer Science and Business Media LLC. - 2057-0082. ; 17:13
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 23. |
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| 24. |
- Lundkvist, Annika, et al.
(författare)
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Functional performance in self-care and mobility after selective dorsal rhizotomy : a 10-year practice-based follow-up study.
- 2015
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Ingår i: Developmental Medicine & Child Neurology. - : Wiley. - 0012-1622 .- 1469-8749. ; 57:3, s. 286-293
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 25. |
- Lundkvist, Annika, et al.
(författare)
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Motor function after selective dorsal rhizotomy: a 10-year practice-based follow-up study.
- 2012
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Ingår i: Developmental Medicine & Child Neurology. - : Wiley. - 0012-1622. ; 54:5, s. 429-435
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 26. |
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| 27. |
- Lundkvist Josenby, Annika, et al.
(författare)
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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
- 2020
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Ingår i: BMC Musculoskeletal Disorders. - : Springer Science and Business Media LLC. - 1471-2474. ; 21:1
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Tidskriftsartikel (refereegranskat)abstract
- Abstract: 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.
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| 28. |
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| 29. |
- Nordmark, Eva, et al.
(författare)
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Development of lower limb range of motion from early childhood to adolescence in cerebral palsy: a population-based study
- 2009
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Ingår i: BMC Medicine. - : Springer Science and Business Media LLC. - 1741-7015. ; 7
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Tidskriftsartikel (refereegranskat)abstract
- Background: The decreasing range of joint motion caused by insufficient muscle length is a common problem in children with cerebral palsy (CP), often worsening with age. In 1994 a CP register and health care programme for children with CP was initiated in southern Sweden. The aim of this study was to analyse the development of the passive range of motion (ROM) in the lower limbs during all the growth periods in relation to gross motor function and CP subtype in the total population of children with CP. Methods: In total, 359 children with CP born during 1990-1999, living in the southernmost part of Sweden in the year during which they reached their third birthday and still living in the area in the year of their seventh birthday were analysed. The programme includes a continuous standardized follow-up with goniometric measurements of ROM in the lower limbs. The assessments are made by each child's local physiotherapist twice a year until 6 years of age, then once a year. In total, 5075 assessments from the CPUP database from 1994 to 1 January 2007 were analysed. Results: The study showed a decreasing mean range of motion over the period 2-14 years of age in all joints or muscles measured. The development of ROM varied according to GMFCS level and CP subtype. Conclusion: We found a decreasing ROM in children with CP from 2-14 years of age. This information is important for both the treatment and follow-up planning of the individual child as well as for the planning of health care programmes for all children with CP.
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| 30. |
- Nordmark, Eva, et al.
(författare)
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Long-term outcomes five years after selective dorsal rhizotomy
- 2008
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Ingår i: BMC Pediatrics. - : Springer Science and Business Media LLC. - 1471-2431. ; 8
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Tidskriftsartikel (refereegranskat)abstract
- Background: Selective dorsal rhizotomy (SDR) is a well accepted neurosurgical procedure performed for the relief of spasticity interfering with motor function in children with spastic cerebral palsy (CP). The goal is to improve function, but long-term outcome studies are rare. The aims of this study were to evaluate long-term functional outcomes, safety and side effects during five postoperative years in all children with diplegia undergoing SDR combined with physiotherapy. Methods: This study group consisted of 35 children, consecutively operated, with spastic diplegia, of which 26 were Gross Motor Function Classification System (GMFCS) levels III-V. Mean age was 4.5 years (range 2.5-6.6). They were all assessed by the same multidisciplinary team at pre- and at 6, 12, 18 months, 3 and 5 years postoperatively. Clinical and demographic data, complications and number of rootlets cut were prospectively registered. Deep tendon reflexes and muscle tone were examined, the latter graded with the modified Ashworth scale. Passive range of motion (PROM) was measured with a goniometer. Motor function was classified according to the GMFCS and measured with the Gross Motor Function Measure (GMFM-88) and derived into GMFM-66. Parent's opinions about the children's performance of skills and activities and the amount of caregiver assistance were measured with Pediatric Evaluation Disability Inventory (PEDI). Results: The mean proportion of rootlets cut in S2-L2 was 40%. Muscle tone was immediately reduced in adductors, hamstrings and dorsiflexors (p<0.001) with no recurrence of spasticity over the 5 years. For GMFCS-subgroups I-II, III and IV-V significant improvements during the five years were seen in PROM for hip abduction, popliteal angle and ankle dorsiflexion (p=0.001), capacity of gross motor function (GMFM) (p=0.001), performance of functional skills and independence in self-care and mobility (PEDI) (p=0.001). Conclusion: SDR is a safe and effective method for reducing spasticity permanently without major negative side effects. In combination with physiotherapy, in a group of carefully selected and systematically followed young children with spastic diplegia, it provides lasting functional benefits over a period of at least five years postoperatively.
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| 31. |
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| 32. |
- Olsson, Ingrid, 1948, et al.
(författare)
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Medical problems in adolescents with myelomeningocele (MMC): an inventory of the Swedish MMC population born during 1986-1989
- 2007
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Ingår i: Acta Paediatr. - : Wiley. - 0803-5253 .- 1651-2227. ; 96:3, s. 446-9
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Tidskriftsartikel (refereegranskat)abstract
- AIM: To describe the prevalence of myelomeningocele (MMC) and the medical needs of adolescents, 15-18 years, with MMC in Sweden, at a time when they are on the threshold of adulthood, leaving paediatrics. METHODS: In a retrospective study, we identified all adolescents with MMC, born during 1986-1989 and living in Sweden on July 1, 2004. An inventory was agreed upon with questions concerning their medical problems and need for medical care. RESULTS: There were 175 persons 15-18 years of age, born with MMC or lipoMMC (prevalence 3.8 per 10,000). Hydrocephalus was seen in 86%, 31% had been operated because of tethered cord syndrome, and 6% for Chiari malformation symptoms. The majority had motor impairments. Clean intermittent catheterisation for bladder emptying was used by 85%, and 59% used enemas on a regular basis because of the neurogenic bowel dysfunction. Renal dysfunction was seen in 1.7% of the adolescents. CONCLUSION: Lifelong follow-up by many specialists, among others neurologists and neurosurgeons, urotherapists and urologists, orthopaedic surgeons and orthotists, is necessary for individuals with MMC. The complex medical situation, often in combination with cognitive difficulties, makes it necessary to coordinate medical services for this increasing group of adults with multiple impairments.
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| 33. |
- Persson-Bunke, Måns, et al.
(författare)
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Scoliosis in a Total Population of Children with Cerebral Palsy.
- 2012
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Ingår i: Spine. - 0362-2436. ; 37:12, s. 708-713
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Tidskriftsartikel (refereegranskat)abstract
- ABSTRACT: Study Design. Epidemiological total population study based on a prospective follow-up CP registry.Objective. To describe the prevalence of scoliosis in a total population of children with CP, to analyse 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 cerebral palsy (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 analysing the risk in an individual child.Methods. A total population of 666 children with CP, aged 4-18 years 1 January 2008, followed with annual examinations in a healthcare program was analysed. Gross motor function (GMFCS level), CP subtype, age at clinical diagnosis of scoliosis, and the Cobb angle at the first radiographic examination were registered.Results. Of the 666 children 116 (17%) had mild and a further 76 (11%) had moderate or severe scoliosis based on clinical examination. Radiographic examination showed a Cobb angle >10 degrees in 54 (8%) children and >20 degrees 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 the age of 18, while children in GMFCS level I or II had almost no risk.Conclusions. The incidence of scoliosis increased with GMFCS level and age. Observed variations related to CP subtype were confounded by 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.
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| 34. |
- Rodby-Bousquet, Elisabet, et al.
(författare)
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Postural asymmetries in young adults with cerebral palsy
- 2013
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Ingår i: Developmental Medicine & Child Neurology. - : Wiley. - 0012-1622 .- 1469-8749. ; 55:11, s. 1009-1015
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Tidskriftsartikel (refereegranskat)abstract
- AimThe 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). MethodsCross-sectional data of 102 people (63 males, 39 females; age range 19-23y, median 21y) 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. ResultsAt 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). ConclusionsPostural asymmetries were associated with scoliosis, hip dislocations, hip and knee contractures, and inability to change position.
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| 35. |
- Rydén, Olof, et al.
(författare)
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Cooperation between parents in caring for diabetic children: relations to metabolic control and parents' field-dependence-independence
- 1993
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Ingår i: Diabetes Research and Clinical Practice. - 1872-8227. ; 20:3, s. 223-229
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Tidskriftsartikel (refereegranskat)abstract
- Aspects of parental interaction were assessed in 20 families with diabetic, insulin-dependent children, using hour-long video-taped interviews, the children being in optimal (O, n = 10) or poor (P, n = 10) metabolic control and showing optimal or poor psychological adaptation. In comparison with the O-group parents, the P-group parents were less appreciative of one another, were less congruent in their attitudes to diabetes care, and appeared not to respect their childrens' independence and integrity; the mothers were discontented with the support given them by their husbands; the children assumed less responsibility for managing their diabetes and seemed less confident during the interview. The results are interpreted in light of an earlier finding that the P-group fathers are more field-dependent (FD) than their wives while the opposite is true for the O-group fathers. With reference to evidence from the cognitive style literature, we suggest that the relatively FD P-group fathers have difficulties in acting as autonomous sources of support to their wives resulting in marital discord and a delayed transition from maternal to self care in their children.
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| 36. |
- Rydén, Olof, et al.
(författare)
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Diabetic children and their parents: personality correlates of metabolic control
- 1990
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Ingår i: Acta Paediatrica Scandinavica. - : Wiley. - 0001-656X .- 0803-5253. ; 79:12, s. 1204-1212
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Tidskriftsartikel (refereegranskat)abstract
- Test measures of field-dependence-independence and impulsiveness-control were obtained from two groups of diabetic children and their parents, the children being in optimal (O, n = 12) or poor (P. n = 27) metabolic control and, according to the judgment of clinicians, showing optimal or poor psychological adaptation. Children of the O-group scored lower in impulsiveness and higher in realistic functioning than those of the P-group. Differences which parallelled these were found between the two groups of fathers. The P-group fathers were decidedly more field-dependent than their wives, while the opposite was found for the O-group. Group differences of the kind obtained were seen as possible determinants of disturbed family interaction or emotional stress in the child in the P-group and of autonomy and self-reliance in the child in the O-group. It is concluded that the role of fathers of diabetic children has been underestimated.
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| 37. |
- Rydén, Olof, et al.
(författare)
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Family therapy in poorly controlled juvenile IDDM: effects on diabetic control, self-evaluation and behavioural symptoms
- 1994
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Ingår i: Acta Pædiatrica. - : Wiley. - 1651-2227 .- 0803-5253. ; 83:3, s. 285-291
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Tidskriftsartikel (refereegranskat)abstract
- Diabetic control, behavioural symptoms and self-evaluation were assessed in 25 children with IDDM who were in poor metabolic control (P group), before and subsequent to one of two treatment conditions: family therapy and conventional treatment (C). In addition, data were collected from 12 patients in optimal control (O group). Prior to treatment the patients in poor control were rated higher than those in the O group for symptoms indicating somatization and internalization of conflict and showed a gloomier self-image. The O group patients had fewer behavioural symptoms and a more positive self-image than non-diabetic reference groups. Diabetic control improved after family therapy only. Furthermore, the family therapy group improved on a combined measure of behavioural symptoms and one aspect of self-evaluation (relations to parents and family). The results suggest that IDDM may either interfere with or foster the child's development towards autonomy, depending on family interaction patterns which affect the child's behaviour and self-esteem. Family therapy is a treatment option which can mediate improved diabetic control by changing family relationships to allow for a better balance between parental and self-care of the child with poorly controlled IDDM.
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| 38. |
- Stockman, Jessica, et al.
(författare)
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Pressure injuries are common in children with myelomeningocele : Results from a follow-up programme and register.
- 2022
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Ingår i: Acta Paediatrica. - : John Wiley & Sons. - 0803-5253 .- 1651-2227. ; 111:8, s. 1566-1572
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 39. |
- Uddenfeldt Wort, Ulrika, et al.
(författare)
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Fractures in children with cerebral palsy: a total population study.
- 2013
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Ingår i: Developmental Medicine & Child Neurology. - : Wiley. - 0012-1622. ; 55:9, s. 821-826
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 40. |
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| 41. |
- Westbom, Lena, et al.
(författare)
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Assessments of pain in children and adolescents with cerebral palsy : A retrospective population-based registry study
- 2017
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Ingår i: Developmental Medicine and Child Neurology. - : Wiley. - 0012-1622. ; 59:8, s. 858-863
-
Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 42. |
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| 43. |
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| 44. |
- Westbom, Lena, et al.
(författare)
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Cerebral palsy in a total population of 4-11 year olds in southern Sweden. Prevalence and distribution according to different CP classification systems.
- 2007
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Ingår i: BMC Pediatrics. - 1471-2431. ; 7
-
Tidskriftsartikel (refereegranskat)abstract
- Background The aim of this study was to investigate the prevalence of cerebral palsy (CP) as well as to characterize the CP population, its participation in a secondary prevention programme (CPUP) and to validate the CPUP database. Methods The study population was born 1990–1997 and resident in Skåne/Blekinge on Jan 1st 2002. Multiple sources were used. Irrespective of earlier diagnoses, neuropaediatrician and other professional medical records were evaluated for all children at the child habilitation units. The CPUP database and diagnosis registers at hospital departments were searched for children with CP or psychomotor retardation, whose records were then evaluated. To enhance early prevention, CP/probable CP was searched for also in children below four years of age born 1998–2001. Results The prevalence of CP was 2.4/1,000 (95% CI 2.1–2.6) in children 4–11 years of age born in Sweden, excluding post-neonatally acquired CP. Children born abroad had a higher prevalence of CP with more severe functional limitations. In the total population, the prevalence of CP was 2.7/1,000 (95% CI 2.4–3.0) and 48% were GMFCS-level I (the mildest limitation of gross motor function). One third of the children with CP, who were born or had moved into the area after a previous study in 1998, were not in the CPUP database. The subtype classification in the CPUP database was adjusted in the case of every fifth child aged 4–7 years not previously reviewed. Conclusion The prevalence of CP and the subtype distribution did not differ from that reported in other studies, although the proportion of mild CP tended to be higher. The availability of a second opinion about the classification of CP/CP subtypes is necessary in order to keep a CP register valid, as well as an active search for undiagnosed CP among children with other impairments.
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| 45. |
- Westbom, Lena, et al.
(författare)
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Childhood malignancy and maternal diabetes or other auto-immune disease during pregnancy.
- 2002
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Ingår i: British Journal of Cancer. - 1532-1827. ; 86:7, s. 1078-1080
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Tidskriftsartikel (refereegranskat)abstract
- Among 4380 children born in 1987-1997 of women with a diagnosis of diabetes and alive at the age of one, 10 were registered in the Swedish Cancer Registry before the end of 1998. The odds ratio for having a childhood cancer after maternal diabetes, stratified for year of birth, maternal age, parity, multiple birth, and 500 g birth weight class was 2.25 (95%CI 1.22-4.15). Among 5842 children born during the period 1973-1997 whose mothers had other auto-immune diseases (SLE, rheumatoid arthritis, Crohn, ulcerous colitis, multiple sclerosis or thyroiditis), the number of observed childhood cancers (9) was close to that expected (8.5). Maternal diabetes but not other auto-immune diseases may be a risk factor for childhood cancer.
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| 46. |
- Westbom, Lena, et al.
(författare)
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Chronic illness among children in a total population. An epidemiological study in a Swedish primary health care district
- 1987
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Ingår i: Scandinavian Journal of Social Medicine. - 0300-8037. ; 15:2, s. 87-97
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Tidskriftsartikel (refereegranskat)abstract
- The prevalence of chronic illness of all 6,080 0-15-year-old children in a defined geographical area in southern Sweden was studied. Information on the health status of the children was obtained from health and medical records, interviews with the district and school nurses and questionnaires to the parents. Chronic illness was defined as a disability interfering with normal life and/or demanding treatment for at least three months during the year 1981 and was revealed in 510 children corresponding to the period prevalence 84/1,000 with 95% confidence interval (CI) 60-108/1,000. Boys predominated. 131 children suffered from more than one disease. Chronic illness caused severe disability in 40 children, moderate in 113 and mild in 357 children. Atopic disorders were the leading cause of chronic illness (34/1,000 with 95% CI 29-39/1,000). Mental and nervous system disorders and congenital malformations were the most frequent causes of severe disability. Prevalence figures for the different diagnoses in relation to disability level, sex and age are presented.
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| 47. |
- Westbom, Lena, et al.
(författare)
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Growth in Children with Cerebral Palsy during five years after Selective Dorsal Rhizotomy: a practice-based study
- 2010
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Ingår i: BMC Neurology. - : Springer Science and Business Media LLC. - 1471-2377. ; 10
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Tidskriftsartikel (refereegranskat)abstract
- Background: Overweight is reported as a side effect of SDR. The aims were to study the development of weight, height and body mass index (BMI) during five years after SDR. Methods: This prospective, longitudinal and practice-based study included all 56 children with CP spastic diplegia undergoing SDR from the start in March 1993 to April 2003 in our hospital. The preoperative Gross Motor Function Classification System (GMFCS) levels were I-II in 17, III in 15, IV-V in 24 children. Median age at SDR was 4.3 years (range 2.4-7.4 years). Weight and height/recumbent length were measured. Swedish growth charts for typically developing children generated weight, height and BMI z-scores for age and gender. Results: The preoperative median z-scores were for height-1.92 and for body mass index (BMI)-0.22. Five years later, the median BMI z-score was increased by + 0.57 (p < 0.05). The occurrence of thinness (BMI < -2 SD) was decreased (n.s.) and obesity (BMI > + 2 SD) increased (p < 0.05). Baseline BMI and age at the start of follow-up influenced the BMI change during the five years (p < 0.001 and p < 0.05 respectively). The individual growth was highly variable, but a tendency towards increasing stunting with age was seen in severe gross motor dysfunction (GMFCS levels IV-V) and the opposite, a slight catch-up of height in children with walking ability (GMFCS levels I-III). Conclusions: These are the first available subtype-and GMFCS-specific longitudinal growth data for children with CP spastic diplegia. Their growth potential according to these data should be regarded as a minimum, as some children were undernourished. It is unknown whether the spasticity reduction through SDR increased the weight gain velocity, or if the relative weight increase was part of the general "obesity epidemic". For some children the weight increase was highly desirable. In others, it resulted in overweight and obesity with risk of negative health effects. Weight and height should be monitored to enable early prevention of weight aberrations also causing problems with mobility, activity and participation.
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| 48. |
- Westbom, Lena
(författare)
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Impact of chronic illness in children on parental living conditions. A population-based study in a Swedish primary care district
- 1992
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Ingår i: Scandinavian Journal of Primary Health Care. - : Informa UK Limited. - 0281-3432 .- 1502-7724. ; 10:2, s. 83-90
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Tidskriftsartikel (refereegranskat)abstract
- In a geographically defined child population aged 0-15, every twelfth child suffered from chronic illness. Their parents and randomly selected control children's parents were asked about their living conditions using questionnaires. Non-responders (30%) had the same sociodemographic profile as responders. The socioeconomic level in index families (n = 95) was lower than in control families (n = 166). Both parents worked fewer hours in index than in control families. Index mothers had more health problems and sick days than control mothers. The parents' social relations were most hampered by having children with allergic disorders or mental retardation. Despite reduced hours, more absence from work to care for sick children, and reduced leisure activities, two thirds of the parents of moderately/severely disabled children found it difficult to cater adequately to the needs of their child. A family approach is recommended to provide comprehensive care of children with chronic illness, in which both specialized and primary care are needed.
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| 49. |
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| 50. |
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