| 1. |
- 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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| 2. |
- 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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| 3. |
- Andersson-Marforio, Sonja, et al.
(författare)
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A survey of the physiotherapy treatment methods for infants hospitalised with acute airway infections in Sweden
- 2021
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Ingår i: European Journal of Physiotherapy. - : Informa UK Limited. - 2167-9169 .- 2167-9177. ; 23:3, s. 149-156
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: The purpose of this study was to investigate what treatment methods physiotherapists in Sweden use for infants 0–24 months hospitalised with acute breathing difficulties due to lower respiratory tract infections. Material and methods: We constructed an anonymous digital survey for paediatric physiotherapists in Sweden. It was distributed by e-mail and was posted on professional websites. Completed forms were obtained from all 21 counties in Sweden. Results: Eighty-eight physiotherapists replied and 52 worked with the target group. Different treatment methods were used, based on the situation and the individual’s symptom. The most common methods involved physical activity and change of the body position. Conclusions: A variety of treatment methods are used by the Swedish physiotherapists. The most commonly used are treatment methods involving frequent changes of the body position and stimulation to physical activity. Thus, the praxis in Sweden seem to differ from methods described in the literature. Methods are chosen depending on the symptoms of the patients. No differences in the choice of treatment methods were found regarding the physiotherapists’ background characteristics.
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| 4. |
- Andersson-Marforio, Sonja, et al.
(författare)
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Physiotherapy interventions encouraging frequent changes of the body position and physical activity for infants hospitalised with bronchiolitis : an internal feasibility study of a randomised control trial
- 2022
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Ingår i: Pilot and Feasibility Studies. - : Springer Science and Business Media LLC. - 2055-5784. ; 8, s. 1-10
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: The effect of a treatment that includes frequent changes of the body position for infants with bronchiolitis has not been evaluated, although it is often used in Swedish hospitals. Because of this, a randomised control trial (RCT) has begun with the aim to evaluate this treatment, comparing the effect of an individualised physiotherapy intervention, a non-individualised intervention, and standard care in a control group. The objective of this internal pilot study was to address uncertainties concerning the ongoing RCT and to determine whether the trial is feasible or not, possibly with adjustments to the protocol.METHODS: Descriptive analyses of the recruitment, retention, data supply for the primary end point, and the usability of the primary outcome measure in the full RCT were performed. A safety analysis was conducted by an independent analysis group.RESULTS: Ninety-one infants were included, 33 (36.3%), 28 (30.8%), and 30 (33.0%) in the respective allocation groups. Fifty-nine (64.8%) were boys. The median age was 2.5 (min-max 0.2-23.7) months. They remained in the study for a median of 46 hours (min-max 2-159). The recruitment rate was 19%. The data supply for the primary end point and for the primary outcome measure was lower than anticipated in the original sample size calculation. Difficulties concerning utilising the primary outcome measure were identified. The safety analysis detected no risks of harm related to participation in the study.CONCLUSIONS: It is feasible to continue the RCT with modifications of the analysis plan. Participation in the study was not associated with any safety risks.TRIAL REGISTRATION: ClinicalTrials.gov NCT03575091 . Registered 2 July 2018. Retrospectively registered.
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| 5. |
- Andersson-Marforio, Sonja, et al.
(författare)
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The effect of physiotherapy including frequent changes of body position and stimulation to physical activity for infants hospitalised with acute airway infections. Study protocol for a randomised controlled trial
- 2020
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Ingår i: Trials. - : Springer Science and Business Media LLC. - 1745-6215. ; 21:1
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Tidskriftsartikel (refereegranskat)abstract
- Background: Every year, many infants are infected with the respiratory syncytial virus (RSV) or other agents and need hospitalisation due to bronchiolitis. The disease causes much suffering and high costs. Thus, it is important that the treatment methods are both effective and cost-efficient. The use of different physiotherapy treatment methods is debated, and not all methods are evaluated scientifically. The clinical praxis in Sweden that includes frequent changes of body position and stimulation to physical activity has not previously been evaluated. The aim of this clinical study is to evaluate this praxis. Methods: This study is a clinical two-centre individually randomised controlled trial (RCT) with three parallel groups. The participants will be randomly assigned to an individualised physiotherapy intervention, a non-individualised intervention, or a control group. All three groups will receive the standard care at the ward, and the two intervention groups will receive additional treatment, including different movements of the body. The primary outcome measure is a clinical index based on determinants for hospitalisation. Baseline assessments will be compared with the assessments after 24 h. The secondary outcome measures include vital signs, the parents' observations, time spent at the hospital ward, and referrals to an intensive care unit. We also want see if there is any immediate effect of the first intervention, after 20 min. Discussion: This study will add knowledge about the effect of two physiotherapy interventions that are commonly in use in Swedish hospitals for infants with bronchiolitis or other acute lower respiratory tract infections. Trial registration: ClinicalTrials.gov NCT03575091. Registered July 2, 2018 - retrospectively registered.
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| 6. |
- 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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| 7. |
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| 8. |
- Lundkvist Josenby, Annika, et al.
(författare)
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Gender differences in treatments and interventions received by children and adolescents with cerebral palsy
- 2020
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Ingår i: BMC Pediatrics. - : Springer Science and Business Media LLC. - 1471-2431. ; 20:1
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: In the Swedish population-based follow-up program and national quality registry for individuals with cerebral palsy (CPUP), physiotherapy (PT) and occupational therapy (OT) treatments are regularly recorded along with functional status. By Swedish law, all citizens irrespective of personal characteristics or socioeconomic status, have the right to receive healthcare and medical treatments as applicable. Previous research has shown gender differences in treatments and interventions received by children with cerebral palsy (CP). The purpose of this study was to examine differences in treatments and interventions by gender and place of birth in children and adolescents participating in CPUP. METHODS: This was a cross-sectional registry study. Data from the latest PT (n = 2635) and OT assessment forms (n = 3480) in CPUP were extracted for individuals aged 0-17 years. Logistic regressions were used to assess the relationships between the outcome variables and gender and place of birth (including an interaction term gender X place of birth), adjusted for age, Gross Motor Function Classification System (GMFCS) levels and spasticity scores for PT interventions and Manual Ability Classification System (MACS) for OT interventions. RESULTS: Results are presented as odds ratios [95% confidence intervals] and p-values. Girls were significantly more likely to have spinal braces than boys; 1.54 [1.07, 2.22] p < 0.05, a significant interaction with place of birth indicated fewer spinal braces prescribed to children born outside of the Nordic countries; 0.20 [0.079, 0.53] p < 0.001. Girls were less likely to have undergone selective dorsal rhizotomy (SDR); 0.49 [0.25, 0.94] p < 0.05. Individuals born outside of the Nordic countries, were significantly less likely to have received intrathecal baclofen (ITB) 0.27 [0.074, 0.98] p < 0.05. CONCLUSIONS: Of the treatments prescribed, gender differences were observed for spinal braces and having undergone SDR. A statistically significant difference based on place of birth was noted for spinal bracing and having received ITB treatment. Other PT and OT treatments were associated with age, level of spasticity, and functional severity as classified using the GMFCS and the MACS. Increased awareness of differences based on gender, and where a child is born, could be obtained by inter- and intraprofessional discussions.
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| 9. |
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| 10. |
- Lundkvist Josenby, Annika, et al.
(författare)
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Longitudinal Construct Validity of the GMFM-88 Total Score and Goal Total Score and the GMFM-66 Score in a 5-Year Follow-up Study
- 2009
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Ingår i: Physical Therapy. - : Oxford University Press (OUP). - 0031-9023 .- 1538-6724. ; 89:4, s. 342-350
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Tidskriftsartikel (refereegranskat)abstract
- Background. The Gross Motor Function Measure (GMFM) is the instrument most commonly used to measure gross motor function in children with cerebral palsy (CP). Different scoring options have been developed, and their measurement properties have been assessed. Limited information is available regarding longitudinal construct validity. Objective. The objective of this research was to study the longitudinal construct validity of 3 scoring options: the 88-item GMFM (GMFM-88) total, the GMFM-88 goal total, and the 66-item GMFM (GMFM-66). Design. A clinical measurement design was used in this study. Methods. Forty-one children with CP diplegia who were undergoing selective dorsal rhizotomy (SDR) were monitored with the GMFM for 5 years. The mean age at SDR was 4.4 years (range=2.5-6.6). Two subgroups for gross motor function before surgery were created according to the Gross Motor Function Classification System (GMFCS): GMFCS levels I to III and GMFCS levels IV and V. This study included results obtained before SDR and at 6, 12, and 18 months and 3 and 5 years after SDR. The effect size (ES) and the standardized response mean (SRM) were calculated. Results. At 6 months postoperatively, ES and SRM values were small (>= 0.5) for all GMFM scoring options. The GMFM-88 total and goal total scores showed large changes in ES values (range=0.8-0.9) and SRM values (range=0.9-1.3) at 12 months postoperatively, whereas the GMFM-66 scores showed lower ES values (range=0.3-0.4) and SRM values (range=0.7-0.8) for both subgroups. Later postoperatively, larger values for longitudinal construct validity were found. The ES and SRM values generally were lower for the GMFM-66 scores than for the GMFM-88 total and goal total scores. Limitations. All children underwent an extensive intervention, and changes in gross motor function were expected. Conclusion. All 3 scoring options showed large longitudinal construct validity in the long-term follow-up. The GMFM-88 total and goal total scores revealed large changes in gross motor function earlier postoperatively than the GMFM-66 scores.
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| 11. |
- 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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| 12. |
- Marforio, Sonja Andersson, et al.
(författare)
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Frequent body position changes and physical activity as effective as standard care for infants hospitalised with acute respiratory infections - a randomised controlled trial
- 2023
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Ingår i: Multidisciplinary Respiratory Medicine. - : PAGEPress Publications. - 1828-695X .- 2049-6958. ; 18
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Tidskriftsartikel (refereegranskat)abstract
- Background: No definite consensus has been reached yet on the best treatment strategy for the large group of infants hospitalised with bronchiolitis or pneumonia. Minimal handling is often recommended, although not evaluated scientifically. There is a need to evaluate the management, as the infants often are critically affected, and the costs for society are high. The aim of this RCT was to evaluate the most common physiotherapy intervention in Sweden for this patient group, including frequent changes in body position and stimulation of physical activity, compared to standard care. Methods: Infants 0-24 months old, without previous cardiac or respiratory diagnoses and born in gestational week 35+, were recruited in two Swedish hospitals. The participants (n=109) were randomised to either interventions in addition to standard care (intervention group) or to standard care alone (control group). The primary outcome measure was time to improvement. The secondary outcomes were immediate changes in oxygen saturation, heart rate and respiratory rate, time to improved general condition (parents' assessment), and lung complications. Results: The median time to improvement was 6 hours in both groups (p=0.54). The result was similar when we adjusted for age in months, sex, tobacco smoke exposure, heredity for asthma/atopic disease, and early stage of the infection (for those with RSV), p=0.69. Analyses of the immediate changes showed no significant differences either (p=0.49-0.89). Time to improved general condition was median 3 hours in the intervention group and 6 hours in the control group, p=0.76. No lung complications occurred. Conclusions: No statistically significant differences in outcomes were detected between the intervention group and the control group. Both strategies were found to be equally effective and safe, indicating that the current recommendation of minimal handling for these infants should be reconsidered. Furthermore, the findings suggest that this treatment can be safely continued.
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| 13. |
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| 14. |
- Rocchi, Melinda, et al.
(författare)
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Survival and causes of death in adults with spina bifida in Sweden : a population-based case-control study
- 2023
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Ingår i: Journal of Rehabilitation Medicine. - 1651-2081. ; 55
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: To analyse survival rates and causes of death in adults with spina bifida in Sweden compared with a matched control group.DESIGN AND METHODS: This population-based study included 11,900 adults born between 1950 and 1997. Three national Swedish registers were used to identify individuals with a diagnosis of spina bifida and a matched control group without spina bifida in the period 1990-2015. International Classification of Diseases codes were used to identify causes of death. Survival analysis was conducted and causes of death in the 2 groups were compared.RESULTS: There was a lower probability of survival for people with spina bifida in all age groups (p < 0.001) compared with the control group. The most prevalent causes of death in people with spina bifida were congenital, respiratory, nervous, cardiovascular, genitourinary, and injuries. People with spina bifida had a higher probability of dying from congenital (p < 0.001), respiratory (p = 0.002), genitourinary (p < 0.002), and nervous-related (p < 0.001) and lower probability of injury-related deaths (p < 0.001).CONCLUSION: Adults with spina bifida in Sweden have a lower survival rate compared with the general population, with the frequency of certain causes of death differing between the two groups. In order to reduce excess premature mortality, prevention and careful management of potentially fatal conditions are essential throughout a patient's lifespan.
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