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- 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. |
- 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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