Background: Idiopathic parkinsonism is a neurodegenerative syndrome of unknown cause and includes Parkinson’s disease (PD) and atypical parkinsonian disorders. The atypical parkinsonian disorders are: Multiple system atrophy (MSA), progressive supranuclear palsy (PSP) and corticobasal degeneration (CBD). The incidence rates of these diseases in Sweden are largely unknown. The diagnosis of each disease relies mainly on clinical examination although several imaging and laboratory parameters may show changes. A diagnosis based on clinical examination is especially difficult early in the course of each disease; diagnosis is easier later on when disease-charactersistic signs have evolved and become more prominent. However, even in later stages it is not uncommon that patients are misdiagnosed. PD can be divided into subgroups based on the main clinical symptoms, i. e. tremor dominant, postural instability and gait difficulty (PIGD), and indeterminate. The PIGD subtype has worse prognosis including higher risk of dementia. The aims were to study the incidence of idiopathic parkinsonism and the different specific parkinsonian disorders in the Umeåregion and to investigate the patients early in the course of the disease with brainmagnetic resonance tomography (MRI), external anal sphincterelectromyography (EAS-EMG) and oculomotor examination. Can these methods improve the differential diagnostic work-up and/or differentiate between the subtypes of PD? Methods: We examined all patients in our catchment area (142,000 inhabitants) who were referred to us due to a suspected parkinsonian syndrome. Our clinic is the only clinic in the area receiving referrals regarding movement disorders. During the period (January 1, 2004 through April 30,2009) 190 patients fulfilled the inclusion criteria and were included in the study. Healthy volunteers served as controls.  Results: Incidence: We found the highest incidences reported in the literature: PD (22.5/100,000/year), MSA(2.4/100,000/year), and PSP (1.2/100,000/year). No CBD patients were encountered. Brain MRI: Degenerative changes were common both in controls and PD. There were no differences between the PD subtypes. EAS-EMG: Pathological changes in EAS-EMG examination were common in PD, MSA and PSP. It was not possible to separate PD, MSA and PSP by the EAS-EMG examination. Oculomotor examination: Pathological results were common in all diagnosis groups compared to controls. It was not possible to separate PD, MSA and PSP or the PD subtypes with the help of oculomotor examination. Conclusions: The incidences of idiopathic parkinsonism, PD, MSA and PSP were higher than previously reported in the literature. It is not clear weather this is due to a true higher incidence in the Umeå region or a more effective casefinding than in other studies. MRI, EAS-EMG and oculomotor examination could not contribute to the differential diagnostic work-up between PD, MSA and PSP nor differentiate between PD subtypes early in the course of the disease.

Syftet med studien var att undersöka livskvaliteten hos barn och ungdomar med cerebral pares. 56 barn och ungdomar med cerebral pares i åldern 10-18 år med Gross Motor Function Classification system (GMFCS) tillhörighet I-III, som gick i grundskola, grundsärskola eller gymnasieskola och som erbjöds insatser från Skånes 11 olika barn- och ungdomshabiliteringar har undersökts via en enkät: Child Health Questionnaire (CHQ-87). CHQ-87 är ett självskattningsformulär bestående av 87 frågor, indelade i två huvudområden som tillsammans täcker individens fysiska och psykosociala hälsa. Enkäten skickades ut per brev under våren 2008. Totalt skickade 167 enkäter ut och 56 enkäter inkom besvarade. Resultatet visar ingen signifikant skillnad mellan den fysiska och den psykosociala hälsan. Skolsituationen och kamratrelationer upplevs positivt av flertalet som svarade och merparten svarar att de har det bra i sina familjer. De upplever att de har en god hälsa och att de inte oroar sig mera över sin hälsa än andra barn. Flera barn och ungdomar besväras av värk både ofta och mycket. Känslolivet upplevs stabilt, självkänslan är god och många upplever att de är glada och tillfreds med sig själva och sin kropp. / The aim of this study was to examine the quality of life in children and adolescents with cerebral palsy. 56 children and adolescents, diagnosed with cerebral palsy, ages 10-18, Gross Motor Function Classification System (GMFCS) level I-III, attending primary or secondary school in Sweden have been asked about their quality of life using a questionnaire, Child Health Questionnaire (CHQ-87). All children and adolescents have attended the 11 child habilitation centers in Skåne. The CHQ-87 is self reported, and consists of two main domains of questioning, covering both the physical and psychological health of the individual.  A total of 167 questionnaires were sent out and 56 were returned and answered. The results show no significant difference between the physical and psychological health.    The situation in school and having friends was highly ranked by most of the children and adolescents and many of them respond that they lead a good life within their families. They express that they are in good health and that they worry no more about their health than others. Many experience frequent and intense pain. They express a stable emotional life, good self esteem, happiness, and that they are satisfied with themselves and their own body.

There is a need of more evidence‐based knowledge of different treatment/training‐approaches for children with Cerebral Palsy (CP) to better describe the objectives of interventions, effects on functioning and fulfilment of health care needs. The general aim of this thesis was to evaluate the effectiveness of intensive training in groups (ITGs) with a habilitation approach and a conductive education approach. In addition, this thesis explored different meanings of participation in ITGs to parents from a parent perspective. This thesis consists of two parts, a quantitative evaluation of the effectiveness of two ITGs (paper I‐III) and a qualitative study exploring parents’ different ways of experiencing ITGs (paper IV). Fifty‐four children, 3‐16 years old, with different types of CP, intellectual capacity and level of gross motor function, participated with their parents in a four weeks ITG with a short‐term and a one‐year follow‐up (paper I‐III). The second sample was strategically composed of parents to 15 children with CP with experiences of ITGs in different settings. The results showed that the proportion of clinically significant change in gross motor capability, functional skills or self‐reported individualized goal measure didn’t show any major differences between the two ITGs. One period of ITG facilitated small clinical and parent reported improvements in functioning for the short‐term. Nine children out of 54 made a clinically significant improvement in gross motor capability (GMFM‐88 total score); 36 children improved if an improvement in any dimension A‐E was counted for. Twenty‐two children out of 52 improved in one of the domains self‐care, mobility and social function (PEDI Functional Skills). Twenty‐eight parents out of 54 perceived a clinically significant improvement on the self‐reported individualized goal measure. Most individualized goals dealt with motor activities and movement‐related body functions in both ITGs. The self‐reported individualized goal measure was not found to be more sensitive to change than the clinical measures. The one‐year follow‐up showed that children had a stable level of functioning. No child deteriorated on the clinical measures short‐term and at the one‐year follow‐up. A higher proportion of change was seen in the social function domain at the one‐year follow‐up, indicating a better potential to change in social function than in gross motor function. The majority of children had a high consumption of training delivered by the Child and Youth Habilitation and merely half of the group continued with repeated ITGs. The differences in functional outcome between children continuing with repeated ITGs compared with only customary Child and Youth Habilitation were limited to a higher proportion of improvements in social functioning. Parents perceived a high service quality in both ITGs. To parents, fulfilment of health care needs was as important as functional outcome. The probability for high service quality was associated with previous experience of the ITG, high expectations of improvements, if expectations and improvements in gross motor capability were achieved and if the child participated in the ITG with the habilitation approach. Therapists in the habilitation approach were more involved in discussions with parents about expectations for the ITG and knowledge exchange than conductors were, indicating more familycenteredness. The qualitative study points to a variety of parental needs that may be met at ITGs but also indicates some problems that should be addressed. Five overarching meaning categories of ITGs were described: ITGs as knowledge promotion, as a complementary training resource, as a bracket to ordinary life, as building up relations with therapists, and as a leisure‐activity. An additional category – “ITGs as risk for ill‐being” – subsumed different kinds of problems that may arise. Conceptions suggest that ITGs contribute to parents’ improved knowledge, support and well‐being, but ITGs could also negatively influence family‐functioning. Professionals and parents need to discuss parents’ previous experiences of ITGs, expectations of functional improvements, the functioning of the child and health care needs in order to individualize goals for ITGs and make the objectives for participation clear. There were no major differences in effectiveness between the two ITGs, a habilitation approach and conductive education approach. Various training approaches should be chosen depending on the child’s and family’s needs. In the choice between different training approaches it is of equal importance to acknowledge functional needs of the child as well as health care needs of the child and parent.

Constraint-induced movement therapy (CIMT) has been demonstrated to yield functional improvements for children with spastic hemiplegic cerebral palsy (CP); however, many studies have reported inconsistent findings with regards to the extent of the benefits observed following the intervention. This study sought to examine the effects of CIMT in the context of a day camp in this population; it also examined the child-therapist (C-T) interaction during the assessment sessions as a potential factor influencing the child’s scores on tests of motor performance. This interaction has not yet been formally measured in the literature, and may influence the perceived outcomes of CIMT. Motor Outcomes: Results demonstrated significant improvements in quality of use of the upper extremity following the intervention; the improvements were maintained at the 3-month follow-up. Analysis of each individual participant yielded additional information on clinically significant improvements. C-T Outcomes: Results demonstrated that the strength of the C-T interaction was significantly and positively correlated with the scores obtained by participants on motor assessments. The results of this study indicate that modified CIMT is effective in inducing lasting and meaningful changes in children with spastic hemiplegic CP. They also suggest that the C-T interaction may contribute to a participant’s performance during the assessment session, which may ultimately affect the perceived outcomes of CIMT. / UOIT

Livskvaliteten kan utsättas för prövningar för ungdomar och vuxna personer med cerebral pares [CP] i kontakt med vårdandet inom öppen och sluten hälso- och sjukvård. Eftersom det finns brister i kompetensen hos sjuksköterskor, är det betydelsefullt att beskriva vad livskvalitet är för funktionshindrade ungdomar och vuxna personer med CP, för att sjuksköterskan ska kunna utföra det goda vårdandet inom omvårdnaden. Syftet var att beskriva faktorer som kan påverka livskvaliteten hos ungdomar och vuxna med cerebral pares. Studien utfördes som en litteraturstudie där 10 vetenskapliga artiklar utgjorde grunden för resultatet. Resultatet visade att faktorer som påverkar livskvaliteten var fysiska, sociala och psykiska faktorerna hos både ungdomar och vuxna personer. En sämre fysisk funktionsnivå hos personer med CP resulterade i fler hinder i vardagen, vilket påverkade livskvaliteten negativt. Mer forskning kan medföra en bättre kunskapsutveckling om livskvalitet i relation till ungdomar och vuxna med CP, vilket därefter kan leda till ett bättre vårdande inom hälso- och sjukvården. Sjuksköterskors utbildning och kunskap kring bemötande och kommunikation gentemot personer med CP kan vara viktiga faktorer för att öka livskvaliteten. / The quality of life can be subjected to trials for adolescents and adults with cerebral palsy [CP] in contact with caring, within the outpatient and inpatient care. Since there is a lack of expertise in nurses, it is important to describe the quality of life for disabled adolescents and adults with CP, to perform the good caring within nursing. The purpose of this study was to describe factors that may contribute to the quality of life in adolescents and adults with cerebral palsy. The study was conducted as a literature review in which 10 scientific articles were the basis for the results. Factors that may contribute to the quality of life were the physical, social and psychical factors in both adolescents and adults. A worse physical function level in people with CP resulted in more obstacles in everyday life, affecting quality of life. More research may lead to a better knowledge about the quality of life in relation to adolescents and adults with CP, which then can influence a better care in the health care system. Nurse’s education and knowledge about treatment and communication with people with CP could be important factors in enhancing the quality of life.

Access technologies facilitate novel and alternative methods for individuals with disabilities to interact with their environment. Finding suitable access solutions for children with severe spastic quadriplegic cerebral palsy can be difficult because of their poor motor control and targeting abilities due to spasticity at the limbs, neck, and head. In this research a multiple camera tongue switch was developed for a 7 year-old case study participant with severe spastic quadriplegia. Remotely via video, this system reacts to tongue protrusions as cues for single-switch access. Having multiple cameras mitigates targeting problems with the head that conventional single camera systems would present. Results of a usability experiment with the participant show that good sensitivity (82%) and specificity (80%) can be achieved with a non-contact tongue protrusion access modality for a user with spastic quadriplegia. Moreover, the experiment verified that the extra cameras improve utility of video-based access technologies for the target population.

Access technologies facilitate novel and alternative methods for individuals with disabilities to interact with their environment. Finding suitable access solutions for children with severe spastic quadriplegic cerebral palsy can be difficult because of their poor motor control and targeting abilities due to spasticity at the limbs, neck, and head. In this research a multiple camera tongue switch was developed for a 7 year-old case study participant with severe spastic quadriplegia. Remotely via video, this system reacts to tongue protrusions as cues for single-switch access. Having multiple cameras mitigates targeting problems with the head that conventional single camera systems would present. Results of a usability experiment with the participant show that good sensitivity (82%) and specificity (80%) can be achieved with a non-contact tongue protrusion access modality for a user with spastic quadriplegia. Moreover, the experiment verified that the extra cameras improve utility of video-based access technologies for the target population.

How to allocate resources in the health care sector is academically dealt with within the subject of health economics. Economic evaluations are within this area used to compare the costs and effects of medical interventions with the purpose to help decision makers decide how to allocate resources. Oxygen deficiency in the foetus during birth can lead to severe life long injuries in the child. In high-risk deliveries, it is therefore considered necessary to use foetal surveillance with a scalp electrode and the choice is between surveillance with internal cardiotocography (CTG) and surveillance with ST analysis. The standard procedure is in most hospitals currently CTG, which records the foetal heart rate and the uterine contractions. The second strategy, in this thesis referred to as ST analysis, complements CTG with foetal electrocardiography(ECG) and ST analysis. The objective of this report is to from a societal perspective determine the cost-effectiveness of using ST analysis in complicated deliveries, compared to the use of CTG alone. A cost-utility analysis was performed based on a probabilistic decision model incorporating the relevant strategies and outcomes. The costs and effects of the two different treatment strategies were compared in a decision tree. Discounted costs and quality-adjusted life-years (QALYs) were measured and simulated over a life-time perspective. The analysis resulted in an incremental effect of 0.005 QALYs for the ST analysis strategy, when compared to the CTG strategy. ST analysis was also associated with a €30 lower cost. Thus, CTG is dominated by the ST analysis strategy. The probability that ST analysis is the cost-effective alternative is high for all values of willingness-to-pay for a QALY, which means that a decision to implement the ST analysis strategy based on the results of this thesis would be surrounded by a low degree of uncertainty.

The aim of the present study was to examine the predictive values of sociodemographic variables, parental variables (parental stress, family functioning, parental adjustment, coping methods), and child variables (coping methods, self concept) for the adjustment of children with spastic cerebral palsy. Transactional stress and coping model was used as the conceptual framework for the study. The sample of the study was composed of 80 children with spastic cerebral palsy and one of their parents. Hierarchical regression analysis was conducted to test the child adjustment by using child gender, parent education, parental stress, family functioning, parental adjustment, parental coping methods, child coping methods, and child self concept as independent variables. Results revealed that parentalstress, parents&rsquo / problem solving/optimistic coping and fatalistic coping predicted the adjustment of children with spastic CP. However, parental adjustment, family functioning, child coping and child self concept were not significantly predicting of child adjustment. The findings, strengths, limitations as well as the implications of the findings were discussed.

<p>How to allocate resources in the health care sector is academically dealt with within the subject of health economics. Economic evaluations are within this area used to compare the costs and effects of medical interventions with the purpose to help decision makers decide how to allocate resources.</p><p>Oxygen deficiency in the foetus during birth can lead to severe life long injuries in the child. In high-risk deliveries, it is therefore considered necessary to use foetal surveillance with a scalp electrode and the choice is between surveillance with internal cardiotocography (CTG) and surveillance with ST analysis. The standard procedure is in most hospitals currently CTG, which records the foetal heart rate and the uterine contractions. The second strategy, in this thesis referred to as ST analysis, complements CTG with foetal electrocardiography(ECG) and ST analysis.</p><p>The objective of this report is to from a societal perspective determine the cost-effectiveness of using ST analysis in complicated deliveries, compared to the use of CTG alone. A cost-utility analysis was performed based on a probabilistic decision model incorporating the relevant strategies and outcomes. The costs and effects of the two different treatment strategies were compared in a decision tree. Discounted costs and quality-adjusted life-years (QALYs) were measured and simulated over a life-time perspective.</p><p>The analysis resulted in an incremental effect of 0.005 QALYs for the ST analysis strategy, when compared to the CTG strategy. ST analysis was also associated with a €30 lower cost. Thus, CTG is dominated by the ST analysis strategy. The probability that ST analysis is the cost-effective alternative is high for all values of willingness-to-pay for a QALY, which means that a decision to implement the ST analysis strategy based on the results of this thesis would be surrounded by a low degree of uncertainty.</p>