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- 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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| 2. |
- Dosa, Nienke P, et al.
(författare)
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Spina bifida global learning collaborative : Educating the next generation of clinicians, researchers, and advocates
- 2023
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Ingår i: Journal of Pediatric Rehabilitation Medicine. - : IOS Press. - 1874-5393 .- 1875-8894. ; 16:4, s. 657-663
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Tidskriftsartikel (refereegranskat)abstract
- PURPOSE: This project aimed to launch an international learning community to guide the development of a spina bifida (SB) curriculum for global health trainees.METHODS: Using a descriptive study design, a convenience sample of SB curricula were identified in 2022-23 by members of the Spina Bifida World Congress Outreach Committee and evaluated during a series of monthly Zoom calls to discuss SB education in a global health context. Participants included (1) leadership from the ReachAnother Foundation, (2) invited panelists from the Spina Bifida World Congress Global Health Symposium, and (3) global health students and preceptors. Education initiatives in Ethiopia, Sweden, Argentina, Ecuador, and the United States were evaluated vis-à-vis format and content.RESULTS: All of the education initiatives referenced the framework of the World Health Organization International Classification of Functioning, Disability and Health. Formats varied and included both virtual and interactive workshops, print materials, videos, and guides for small group discussion. Content addressed four domains: Folate Prevention, Neurosurgical Training, After Care, and Data Collection. A multidisciplinary approach, partnerships with families, and workforce pipeline training were identified as guiding themes for educating the next generation of SB researchers and clinicians in global health settings.CONCLUSION: The Spina Bifida Global Learning Collaborative is a transnational group of advocates, clinicians, and investigators whose mission is the advancement of SB-related global health education. Lessons learned from the collaborative are being leveraged to develop a global health curriculum for learners, which may improve services for individuals with SB around the globe.
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| 3. |
- Eek, Meta Nyström, et al.
(författare)
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Follow-up of brace-treated scoliosis in children with cerebral palsy and spina bifida
- 2022
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Ingår i: Journal of pediatric rehabilitation medicine. - 1875-8894. ; 15:4, s. 607-614
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Tidskriftsartikel (refereegranskat)abstract
- PURPOSE: This study aimed to describe brace use, progression of scoliosis, and surgery in children with cerebral palsy (CP) and spina bifida (SB) who were initially treated with a brace. METHODS: Medical records were retrospectively analysed for brace compliance, treatment complications, curve size measurements with and without the brace at both start and at follow-up, and number of patients undergoing spine surgery. RESULTS: Sixty-eight children were included (CP 47, SB 21), 37 of whom were girls, with a mean age at start of treatment of 11.1 (CP) and 8.2 (SB) years. Most had severe motor problems; only four children with CP and five with SB were able to walk. Thirty-five in the group with CP and 11 in the group with SB had a curve size over 40°.Forty used the brace full-time, 19 half-time and nine for a varying proportion of time. Transient complications of brace treatment were seen in 28%. The yearly progression of curve-size was 4.2° in CP and 2.3° in SB.Twenty-eight patients underwent surgery and complications were present in 75% of these patients. Twenty-seven out of 46 patients with severe scoliosis did not undergo surgery. CONCLUSION: Brace treatment was possible, even in patients with severe scoliosis. Bracing can delay the progression of scoliosis.
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| 5. |
- Ertzgaard, Per, 1958-, et al.
(författare)
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Oculomotor screening and neuro-visual rehabilitation following pediatric brain tumor resection
- 2023
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Ingår i: Journal of Pediatric Rehabilitation Medicine. - : Ios press. - 1874-5393 .- 1875-8894. ; , s. 1-7
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Tidskriftsartikel (refereegranskat)abstract
- Visual difficulties are common after brain tumors, despite a lack of visual complaints at diagnosis. These include difficulties with eye movements, visual coordination, vergence, accommodation, and photophobia, in addition to more obvious problems such as visual field defects.This case report presents the results of a thorough neuro-visual evaluation in a boy with sequelae after a brain tumor including intermittent double vision that was not explained by routine visual examination. Subjective complaints included poor reading perseverance, intermittent blurred and double vision, headache around the eyes when performing near activities, less efficient eye movement behavior in reading tasks, and increased sensitivity to visual motion. The patient participated in a multidisciplinary visual rehabilitation program that included reading glasses with prism compensation and tinted glasses, as well as training with the aim of improving eye teaming, near vision functions, and perseverance in eye movements.The patient responded quickly to the vision therapy program, with positive changes after just four weeks. Repeated neuro-visual evaluations over eight months showed remarkable improvements that were stable over time. This encouraging case report supports the notion that neuro-visual evaluation and rehabilitation should be included in the follow-up of patients after brain tumors.
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| 9. |
- Jennische, Margareta
(författare)
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Linguistic difficulties in children andadolescents after acquired brain injury : a retrospective study.
- 2010
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Ingår i: Journal of Pediatric Rehabilitation Medicine. - Amsterdam : IOS Press. - 1875-8894. ; 3:4, s. 251-258
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Tidskriftsartikel (refereegranskat)abstract
- Objective The purpose of this study was to focus on two linguistic abilities, word retrieval (expressive language) and comprehension of vocabulary and grammar (receptive language), as well as to investigate to what extent longterm problems exist in these areas in children following traumatic brain injury. Methods Two groups of children were studied retrospectively: twentyfour children with traumatic brain injury (TBI) and twenty-one children diagnosed with brain tumour. All children had been referred to the rehabilitation team for assessment. The children were between four and seventeen years old when assessed, with the assessments performed at least one year after the injury or brain tumour diagnosis. An established set of tests regarding word retrieval and comprehension of vocabulary and grammar was used, and the results were compared with normative test data. Results In both clinical groups, significantly more children scored lower than the designated “normal” score than in the normative sample on tests measuring confrontation naming and phonological word retrieval. In addition, in the brain tumour group, more children demonstrated significantly lower results than normal performance on a test for semantic word retrieval. In the TBI group, significantly more children scored below the normal value on tests of word and grammatical comprehension when compared to the normative sample. Conclusions This study confirms that word retrieval is an area of deficit in many children with acquired brain injuries one year or more after the injury occurred. The study also indicates that children with TBI may have persistent deficits in comprehension of both vocabulary and grammar.
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