Ann Alriksson-Schmidt

Prevention of dislocation of the hip in children with cerebral palsy 20-year results of a population-based prevention programme

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.

Are adolescent girls with a physical disability at increased risk for sexual violence

BACKGROUND The purpose of this study was to investigate whether US female adolescents who self-reported having a physical disability or long-term health problem were more likely to report having been physically forced to have sexual intercourse than US female adolescents without a physical disability or long-term health problem. METHODS Using data from the 2005 U.S. National Youth Risk Behavior Survey (YRBS), we employed logistic regression analyses to estimate the association between physical disability (and other variables) and the risk for sexual violence among US high school girls. RESULTS Female high school students who reported a physical disability or long-term health problem were more likely to report having been physically forced to have sexual intercourse than those who did not (19.6% vs 9.4%; chi(2) = 14.51, p = .003). Results from our multivariate analysis reveal that this association remained significant (adjusted odds ratio [AOR], 1.57; 95% confidence interval [CI], 1.10-2.23) after adjusting for certain demographic characteristics, physical health problems, behavioral health risks, and violent conduct. CONCLUSIONS Our findings suggest that adolescent girls in the United States with a physical disability or long-term health problem may be at increased risk for sexual violence. It is important that national efforts to reduce sexual violence consider how to address the unmet needs of children and adolescents with disabilities. As most adolescent girls spend the majority of their time in a school setting, it is of particular importance that school health professionals are aware of the current findings.

A combined surveillance program and quality register improves management of childhood disability

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 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.

Pain in children and adolescents with cerebral palsy: a population‐based registry study

We assessed prevalence and location of pain in a total population of children and adolescents with cerebral palsy (CP) based on the Gross Motor Function Classification System (GMFCS), age and gender.

The National Spina Bifida Program Transition Initiative: The people, the plan, and the process.

This article outlines and summarizes the rationale and the working process that was undertaken by the National Spina Bifida Program to address the issues of transitioning throughout the life course for persons growing up with spina bifida. Their challenges include achieving independent living, vocational independence, community mobility, and participation in social activities, and health management. The creation, the underlying concepts, and the dissemination of the Life Course Model are described.

A Family Perspective: How this Product can Inform and Empower Families of Youth with Spina Bifida

This article focuses on how the Life Course Model Web site can help family members build on the strengths of individuals with spina bifida and address areas of difficulty. A developmental perspective is adopted, which maintains that the Life Course Model Web site is useful at all stages of development, with the information provided for families at one stage of development building on the information provided for those at earlier stages of development. A brief overview is provided of relevant theories that supported the development of the Life Course Model. There is a review of the literature on the adjustment of families of individuals with spina bifida and the psychosocial adjustment of affected youth. How families may benefit from engagement with the 3 content areas covered by the Web site is discussed, namely child health and the transfer of medical management from parent to child (health/self-management), the development of social relationships (social relationships), and the achievement of milestones during emerging adulthood, including achievements in the areas of education and employment (education, employment, and income support).

The Natural History of Spina Bifida in Children Pilot Project: Research Protocol

Background Population-based empirical information to inform health care professionals working with children with spina bifida currently is lacking. Spina bifida is a highly complex condition that not only affects mobility but many additional aspects of life. We have developed a pilot project that focuses on a broad range of domains: surgeries, development and learning, nutrition and physical growth, mobility and functioning, general health, and family demographics. Specifically, we will: (1) explore the feasibility of identifying and recruiting participants using different recruitment sources, (2) test a multidisciplinary module to collect the data, (3) determine the utility of different methods of retrieving the data, and (4) summarize descriptive information on living with spina bifida. Objective The overall objective of the project was to provide information for a future multistate prospective study on the natural history of spina bifida. Methods Families with a child 3 to 6 years of age with a diagnosis of spina bifida were eligible for enrollment. Eligible families were identified through a US population-based tracking system for birth defects and from a local spina bifida clinic. Results This is an ongoing project with first results expected in 2013. Conclusions This project, and the planned multistate follow-up project, will provide information both to health care professionals experienced in providing care to patients with spina bifida, and to those who have yet to work with this population. The long-term purpose of this project is to increase the knowledge about growing up with spina bifida and to guide health care practices by prospectively studying a cohort of children born with this condition.

Stability of the Gross Motor Function Classification System in Children and Adolescents with Cerebral Palsy : A Retrospective Cohort Registry Study

To investigate the stability and to determine factors that affect change in the Gross Motor Function Classification System (GMFCS) in a sample from the total population with cerebral palsy (CP) in two regions of Sweden.

ArthroplastyWatch—beyond borders, beyond compliance

It is now clear that national regulatory and professional bodies do not pay due attention to unfavourable or negative results regarding specific devices, new surgical techniques, and treatments.1 As a result, action is delayed. Communication of adverse events or product recalls does not travel well across borders. Worse still, it can take months or even years before practising surgeons learn about …

The National Spina Bifida Program

Background Spina bifida affects approximately 1,200 of the more than 4 million babies born in the United States each year. Because of the increased mortality and long-term disability, the myriad of secondary conditions as well as the profound influence on affected individuals and their families, public health plays an essential role for individuals with spina bifida in terms of health promotion, prevention of secondary health conditions, and access to preventive health care, in addition to its role in primary prevention.