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- 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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| 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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