Symtom som påverkar den hälsorelaterade livskvaliteten hos svårt leversjuka patienter : En litteraturöversikt

Syfte: Syftet med studien var att beskriva vilka symtom som påverkade den hälsorelaterade livskvaliteten hos svårt leversjuka patienter samt beskriva hur symtomen påverkade patientens hälsorelaterade livskvalitet. Metod: Vetenskapliga artiklar söktes i databaserna Cinahl, Ovid Medline, Pubmed och PsycINFO. 15 vetenskapliga artiklar godkändes efter kvalitetsgranskning och låg till grund för resultatet. Resultat: I litteraturstudien framkom att patienternas hälsorelaterade livskvalitet påverkades av trötthet, hjärnpåverkan orsakat av sviktande leverfunktion, vätskeansamling i kroppen, klåda, smärta, muskelkramper, symtom från mag-tarmkanalen, benskörhet samt torrhet i ögon och mun. Symtomen påverkade i olika grad den psykiska-, fysiska- och sociala hälsorelaterad livskvaliteten. Psykiskt upplevde patienterna bristande energi och motivation, försämrad sömn, koncentrationssvårigheter, försämrad självkänsla, osäkerhet, frustration, skuld, otillräcklighet, rädsla, oro, ångest, depression och självmordstankar. De fysiska följderna innebar utmattning, andnöd, ökad smärtupplevelse och begränsad förmåga till fysisk aktivitet. Besvären innebar problem att hantera relationer, gav begränsningar i det yrkesverksamma livet, inskränkning i sociala aktiviteter samt svårigheter att klara av det dagliga livet. Slutsatser: Många symtom påverkade den svårt leversjuka patientens hälsorelaterade livskvalitet. Symtomen gav patienten problem att klara av olika vardagssituationer. Den genomförda litteraturstudien ger sjuksköterskan kunskap för att kunna tolka och bedöma de symtom som patienten beskriver.  

Betydelsen av fysisk aktivitet för att lindra depressiva besvär hos ungdomar

Syfte: Att utifrån litteratur belysa betydelsen av fysisk aktivitet för att lindra depressiva besvär hos ungdomar. Design: Studien har utförts som en litteraturöversikt. Metod: Litteratur som publicerats mellan 2001-2012 söktes fram i databaserna PsycINFO och CINAHL. Sammanlagt 14 vetenskapliga artiklar har granskats och använts i litteraturöversikten. Resultat: Fysisk aktivitet har visat sig ha en positiv effekt på depression hos ungdomar. Fysisk aktivitet visade på en dämpande effekt på depressiva symtom, och påvisade att viktiga effekter av fysisk aktivitet ger en lindring av depressiva symtom. Skillnader mellan yngre tonåringar och äldre tonåringar är att de yngre tenderar att ha högre deltagande i fysisk aktivitet gentemot de äldre, varav mängden fysisk aktivitet minskar från de tidiga tonåren till de äldre. Familjefaktorer har ett starkt samband med fysisk aktivitet. Ungdomar som har en god relation med sina föräldrar har också ett större deltagande i olika fysiska aktiviteter. Flickor löper större risk än pojkar att drabbas av depression. Förebyggande strategier avseende fysisk aktivitet kan vara framgångsrika, och det är viktigt att ha fokus på ungdomar med en historia av psykisk ohälsa och hälsoriskbeteenden för att minska risken för fortsatt utveckling av psykiska problem. Slutsats: Depression hos ungdomar skapar en sämre livskvalitet. Fysisk aktivitet är en viktig del av välmåendet och bör framhävas i relation till psykisk ohälsa hos unga. Att uppmärksamma flickors tendenser till ett sämre mående är en viktig del i omvårdnadsarbetet. Det är viktigt att som sjuksköterska ha vetskap om sambandet mellan fysisk aktivitet och depressiva symtom för att kunna arbeta preventivt och applicera kunskapen i det dagliga arbetslivet och i möten med ungdomar.

Det goda bemötandet inom prehospital akutsjukvård : En litteraturöversikt

Syfte: Syftet med denna litteraturöversikt var att beskriva vad som kännetecknar ett gott bemötande inom den prehospitala akutsjukvården och vilken betydelse bemötandet har för vården. Metod: Studien genomfördes som en litteraturöversikt och artiklar söktes via databaserna CINAHL och PubMed. De elva inkluderade artiklarna resulterade i kategorier och subkategorier som beskriver vad som är utmärkande för ett gott bemötande inom den prehospitala sjukvården och vilken betydelse det har för vården. Resultat: Resultatet visade att ambulanspersonalen ska anpassa kommunikationen efter patientens förutsättningar och de ska ha ett förhållningssätt som baseras på respekt, ödmjukhet och empati. En förutsättning för en god omvårdnad är att en omvårdnadsrelation, baserad på tillit och förtroende, upprättas. Omvårdnadsrelationen synliggör patientens sårbarhet, vilket ställer krav på ambulanspersonalen att visa respekt för patientens integritet. Slutsats: Patienten har inte bara fysiska utan även psykiska och sociala behov. Att ambulanspersonalen har en holistisk människosyn gör att patienten blir bemött som en unik individ och därmed får en bättre prognos medan brister i den prehospitala vårdkedjan kan äventyra patientsäkerheten.

Effekter av massage hos cancerpatienter med ångest : En litteraturöversikt

Syfte: Syftet med litteraturstudien var att beskriva vilka effekter massage har hos cancerpatienter som lider av ångest. Metod: Examensarbetet utfördes som en litteraturöversikt med 16 vetenskapliga artiklar varav tre med kvalitativ ansats och tretton med kvantitativ ansats. Datainsamling gjordes i databaserna PubMed, CINAHL, Google Scholar och via manuell sökning. Huvudresultat: Resultatet presenterades i fem kategorier för att beskriva vilka effekter massage har hos cancerpatienter som lider av ångest. De fem kategorierna var; lindring av ångest, lindring av fysiska och psykiska symtom, ökad livskvalitet, ökad inre ro och ingen lindring av ångest. Ångesten lindrades hos patienter genom närvaro av personal som gav massage. Massage upplevdes av patienten som ett sätt att finna en inre ro inte bara under massagen utan även tiden efter massagen. Nivåerna av ångest sjönk och livskvaliteten förbättrades generellt av massagen. Patienterna upplevde effekter av muskelavslappning, bättre sömn, mindre smärta, bättre cirkulation, reducerad ångest och stress. Slutsats: Massage kunde i de flesta fall lindra lidandet hos cancerpatienter genom att lindra patientens ångest, lindra fysiska och psykiska symtom, öka livskvaliteten och öka patientens inre ro. Vårdpersonal bör tänka på att mjuk massage kan förstärka effekten av den medicinska behandlingen mot ångest.

Anhörigvårdare till strokedrabbade personer

Syftet med studien var att beskriva hur anhöriga upplevde att deras dagliga liv påverkades av att vara anhörigvårdare till en strokedrabbad person och vilken effekt riktade sjuksköterskeinterventioner hade för anhörigvårdarna. Studien genomfördes som en litteraturstudie. Databaser som användes var PubMed, Cinahl och Scopus. Resultatet visade att många anhörigvårdare upplevde oro och stress i olika situationer och detta skapade begränsningar i deras dagliga liv. Anhörigvårdarnas psykiska och fysiska hälsa påverkades av att vårda sin anhörig. Relationen mellan anhörigvårdaren och den strokedrabbade upplevdes förändrad efter stroke både till det positiva och det negativa. Anhörigvårdare som fick ett stöd- och utbildningsprogram från sjuksköterskan fick en ökad livskvalité och bättre kunskap kring stroke. Även då praktisk träning kombinerades med stöd- och utbildningsprogram ökade livskvalitén. De anhörigvårdare som fick ett anpassat utskrivningsprogram och sedan fick uppföljning kunde bättre prioritera de dagliga aktiviteterna men deras livskvalité blev inte bättre. Slutsats: Anhörigas dagliga liv påverkades av att vara anhörigvårdare till en strokedrabbad person till både det positiva och negativa. När sjuksköterskeinterventioner gavs ökade anhörigvårdarnas livskvalité, välbefinnande och de gav vård av bättre kvalitet. 

Patient participation : what it is and what it is not

In general, patient participation is regarded as being informed and partaking in decision making regarding one’s care and treatment. This interpretation is common in legislation throughout the Western world and corresponding documents guiding health care professionals, as well as in scientific studies. Even though this understanding of the word participation can be traced to a growing emphasis on individuals’ autonomy in society and to certain dictionary defi nitions, there are other ways of understanding participation from a semantic point of view, and no trace of patients’ descriptions of what it is to participate can be found in these definitions. Hence, the aim of this dissertation was to understand patients’ experience of the phenomenon of patient participation. An additional aim was to understand patients’ experience of non-participation and to describe the conditions for patient participation and non-participation, in order to understand the prerequisites for patient participation. The dissertation comprises four papers. The philosophical ideas of Ricoeur provided a basis for the studies: how communication can present ways to understand and explain experiences of phenomena through phenomenological hermeneutics. The first and second studies involved a group of patients living with chronic heart failure. For the fi rst study, 10 patients were interviewed, with a narrative approach, about their experience of participation and non-participation, as defi ned by the participants. For the second study, 11 visits by three patients at a nurse-led outpatient clinic were observed, and consecutive interviews were performed with the patients and the nurses, investigating what they experience as patient participation and non-participation. A triangulation of data was performed to analyse the occurrence of the phenomena in the observed visits. For paper 3 and 4, a questionnaire was developed and distributed among a diverse group of people who had recent experience of being patients. The questionnaire comprised respondent’s description of what patient participation is, using items based on findings in Study 1, along with open-ended questions for additional aspects and general issues regarding situations in which the respondent had experienced patient participation and/or non-participation. The findings show additional aspects to patient participation: patient participation is being provided with information and knowledge in order for one to comprehend one’s body, disease, and treatment and to be able to take self-care actions based on the context and one’s values. Participation was also found to include providing the information and knowledge one has about the experience of illness and symptoms and of one’s situation. Participation occurs when being listened to and being recognised as an individual and a partner in the health care team. Non-participation, on the other hand, occurs when one is regarded as a symptom, a problem to be solved. To avoid non-participation, the information provided needs to be based on the individual’s need and with recognition of the patient’s knowledge and context. In conclusion, patient participation needs to be reconsidered in health care regulations and in clinical settings: patients’ defi nitions of participation, found to be close to the dictionaries’ description of sharing, should be recognised and opportunities provided for sharing knowledge and experience in two-way-communication.

Sjuksköterskans främjande av livskvalitet hos lungcancerpatienter i palliativ fas : En litteraturöversikt

Bakgrund: Lungcancer är en sjukdom med dålig prognos och hög dödlighet. Många patienter behandlas därför med palliativ vård. Att ha lungcancer påverkar patientens livskvalitet, och sjuksköterskan har ett stort ansvar i att främja patientens livkvalitet. Syfte: Att beskriva vad som innefattades i begreppet livskvalitet utifrån lungcancersjuka patienter i palliativ fas, vilka faktorer som påverkade känslan av den och hur sjuksköterskan kunde främja livskvalitet utifrån sin yrkesroll. Metod: Studien genomfördes som en litteraturöversikt. Totalt användes 25 artiklar av både kvalitativ och kvantitativ ansats. Artiklar till studien söktes i databaserna CINHAL och PubMed. Resultat: Livskvalitet är ett multidimensionellt begrepp och det kan ses som någonting individuellt och unikt för varje enskild lungcancersjuk patient, och innebörden av begreppet hade olika betydelse för alla. Livskvalitet kunde påverkas utifrån både fysiska, psykiska, sociala och existentiella aspekter. Sjuksköterskan hade därför en viktig roll i att ha en helhetssyn på patienten och se denne som en enskild individ i situationen, för att livskvalitet ska kunna främjas optimalt hos patienten. Slutsats: Livskvalitet är ett oändligt begrepp, som har en unik betydelse för varje patient. Som sjuksköterska fanns inget facit på vilka åtgärder som bäst kan främja patientens livskvalitet. Dock handlar det om till stor del för sjuksköterskan att våga möta patienten i denna svåra situation och att våga lyssna på patienten.

Kunskap för kreativitet : En undersökning av kreativitet i teori och praktik

Den här studien undersöker teoretiska definitioner av kreativitet, förhållandet mellan kreativitet och kunskap, och låtskrivares strategier för att uppnå kreativitet. Låtskrivande är den skapandeprocess som ska resultera i en färdig musikprodukt. Kreativitet innebär brytande av gamla regler och konventioner för att skapa någonting nytt. Varje musikgenre har specifika regler och konventioner för hur den ska låta och uppfattas, vilket då innebär att man måste ha kunskap om dem för att kunna skriva musik inom den valda genren. Detta kan få låtskrivarprocessen att förefalla som ickekreativ, trots att låtskrivande är känt som en konstnärlig och kreativ uttrycksform. I den här studien användes kvalitativa intervjuer för att ge svar på forskningsfrågorna. Tre erfarna och tre mindre erfarna låtskrivare intervjuades, vilka berättade om sina musikkunskaper, definitioner av kreativitet och skapandeprocesser. Resultaten visade att låtskrivarna inte uppfattade att deras musikkunskap var hämmande för deras kreativitet. Studien visade att låtskrivarna hade utvecklat specifika strategier för hur de skulle kunna skapa på rutin och få tillgång till sin kreativitet. Slutligen definierade låtskrivarna specifika faktorer som påverkade kreativiteten, som till exempel psykiska och fysiska distraktioner.  

A web application for follow-up of results from a mobile device test battery for parkinson’s disease patients

Background: A test battery consisting of self-assessments and motor tests (tapping and spiral drawing) was developed for a hand computer with touch screen in a telemedicine setting. Objectives: To develop and evaluate a web-based system that delivers decision support information to the treating clinical staff for assessing PD symptoms in their patients based on the test battery data. Methods: The test battery is currently being used in a clinical trial (DAPHNE, EudraCT No. 2005-002654-21) by sixty five patients with advanced Parkinson’s disease (PD) on 9991 test occasions (four tests per day during in all 362 week-long test periods) at nine clinics around Sweden. Test results are sent continuously from the hand unit over a mobile net to a central computer and processed with statistical methods. They are summarized into scores for different dimensions of the symptom state and an ‘overall test score’ reflecting the overall condition of the patient during a test period. The information in the web application is organized and presented graphically in a way that the general overview of the patient performance per test period is emphasized. Focus is on the overall test score, symptom dimensions and daily summaries. In a recent preliminary user evaluation, the web application was demonstrated to the fifteen study nurses who had used the test battery in the clinical trial. At least one patient per clinic was shown. Results: In general, the responses from nurses were positive. They claimed that the test results shown in the system were consistent with their own clinical observations. They could follow complications, changes and trends within their patients. Discussion: In conclusion, the system is able to summarise the various time series of motor test results and self-assessments during test periods and present them in a useful manner. Its main contribution is a novel and reliable way to capture and easily access symptom information from patients’ home environment. The convenient access to current symptom profile as well as symptom history provides a basis for individualized evaluation and adjustment of treatments.

12-month results from a novel test battery used in a duodenal levodopa infusion trial

A novel test battery consisting of self-assessments and motor tests (tapping and spiral drawing) for patients with Parkinson’s disease (PD) was developed for a hand computer with touch screen in a telemedicine setting. Tests are performed four times per day in the home environment during weeklong test periods. Results are processed into scores for different dimensions of the symptom state and an ‘overall score’ reflecting the global condition of a patient during a test period. The test battery was validated in a separate study recently submitted to Mov Disord. This test battery is currently being used in an open longitudinal trial (DAPHNE, EudraCT No. 2005- 002654-21) by sixty-five patients with advanced PD at nine clinics around Sweden. On inclusion, the patients were either receiving treatment with duodenal levodopa/carbidopa infusion (Duodopa®) (n=36), or they were candidates for receiving this treatment (n=29). We now present interim results for the first twelve months. Test periods were performed in three-month intervals. During most of the periods, UPDRS ratings were performed in afternoons at the start of the week. In twenty of the patients, scores were available during individually optimized oral polypharamacy, before receiving infusion and at least one test period after having started infusion treatment. Usability and compliance with performing tests, this far are good, both with patients and clinical staff. Correlations between test periods 2 and 3 during infusion treatment (three months apart) are stronger for overall test score than for total UPDRS, indicating good reliability. The correlation between overall test score and UPDRS for all test periods is adequate (r=-0.6). In an exact Wilcoxon signed rank test, where the endpoint is the change from the first to the twelve month test period (n=25), there was no change in test results in any of the test battery dimensions for the patients already receiving infusion when included. However, in the patients entering the study before receiving infusion, there was a significant change (improvement) from the baseline to the twelve month test period in dimensions; ‘off’, ‘dyskinesia’ and ‘satisfied’ and in the ‘overall score’ (n=15). The mean improvement in overall score after infusion was 29% (p=0.015). We conclude that the test battery is able to measure a functional improvement with infusion that is sustained over at least twelve months.

Computerized identification of motor complications in Parkinson's disease

Objective: To investigate whether spirography-based objective measures are able to effectively characterize the severity of unwanted symptom states (Off and dyskinesia) and discriminate them from motor state of healthy elderly subjects. Background: Sixty-five patients with advanced Parkinson’s disease (PD) and 10 healthy elderly (HE) subjects performed repeated assessments of spirography, using a touch screen telemetry device in their home environments. On inclusion, the patients were either treated with levodopa-carbidopa intestinal gel or were candidates for switching to this treatment. On each test occasion, the subjects were asked trace a pre-drawn Archimedes spiral shown on the screen, using an ergonomic pen stylus. The test was repeated three times and was performed using dominant hand. A clinician used a web interface which animated the spiral drawings, allowing him to observe different kinematic features, like accelerations and spatial changes, during the drawing process and to rate different motor impairments. Initially, the motor impairments of drawing speed, irregularity and hesitation were rated on a 0 (normal) to 4 (extremely severe) scales followed by marking the momentary motor state of the patient into 2 categories that is Off and Dyskinesia. A sample of spirals drawn by HE subjects was randomly selected and used in subsequent analysis. Methods: The raw spiral data, consisting of stylus position and timestamp, were processed using time series analysis techniques like discrete wavelet transform, approximate entropy and dynamic time warping in order to extract 13 quantitative measures for representing meaningful motor impairment information. A principal component analysis (PCA) was used to reduce the dimensions of the quantitative measures into 4 principal components (PC). In order to classify the motor states into 3 categories that is Off, HE and dyskinesia, a logistic regression model was used as a classifier to map the 4 PCs to the corresponding clinically assigned motor state categories. A stratified 10-fold cross-validation (also known as rotation estimation) was applied to assess the generalization ability of the logistic regression classifier to future independent data sets. To investigate mean differences of the 4 PCs across the three categories, a one-way ANOVA test followed by Tukey multiple comparisons was used. Results: The agreements between computed and clinician ratings were very good with a weighted area under the receiver operating characteristic curve (AUC) coefficient of 0.91. The mean PC scores were different across the three motor state categories, only at different levels. The first 2 PCs were good at discriminating between the motor states whereas the PC3 was good at discriminating between HE subjects and PD patients. The mean scores of PC4 showed a trend across the three states but without significant differences. The Spearman’s rank correlations between the first 2 PCs and clinically assessed motor impairments were as follows: drawing speed (PC1, 0.34; PC2, 0.83), irregularity (PC1, 0.17; PC2, 0.17), and hesitation (PC1, 0.27; PC2, 0.77). Conclusions: These findings suggest that spirography-based objective measures are valid measures of spatial- and time-dependent deficits and can be used to distinguish drug-related motor dysfunctions between Off and dyskinesia in PD. These measures can be potentially useful during clinical evaluation of individualized drug-related complications such as over- and under-medications thus maximizing the amount of time the patients spend in the On state.

Mobile systems for monitoring Parkinson's disease

A challenge for the clinical management of Parkinson's disease (PD) is the large within- and between-patient variability in symptom profiles as well as the emergence of motor complications which represent a significant source of disability in patients. This thesis deals with the development and evaluation of methods and systems for supporting the management of PD by using repeated measures, consisting of subjective assessments of symptoms and objective assessments of motor function through fine motor tests (spirography and tapping), collected by means of a telemetry touch screen device. One aim of the thesis was to develop methods for objective quantification and analysis of the severity of motor impairments being represented in spiral drawings and tapping results. This was accomplished by first quantifying the digitized movement data with time series analysis and then using them in data-driven modelling for automating the process of assessment of symptom severity. The objective measures were then analysed with respect to subjective assessments of motor conditions. Another aim was to develop a method for providing comparable information content as clinical rating scales by combining subjective and objective measures into composite scores, using time series analysis and data-driven methods. The scores represent six symptom dimensions and an overall test score for reflecting the global health condition of the patient. In addition, the thesis presents the development of a web-based system for providing a visual representation of symptoms over time allowing clinicians to remotely monitor the symptom profiles of their patients. The quality of the methods was assessed by reporting different metrics of validity, reliability and sensitivity to treatment interventions and natural PD progression over time. Results from two studies demonstrated that the methods developed for the fine motor tests had good metrics indicating that they are appropriate to quantitatively and objectively assess the severity of motor impairments of PD patients. The fine motor tests captured different symptoms; spiral drawing impairment and tapping accuracy related to dyskinesias (involuntary movements) whereas tapping speed related to bradykinesia (slowness of movements). A longitudinal data analysis indicated that the six symptom dimensions and the overall test score contained important elements of information of the clinical scales and can be used to measure effects of PD treatment interventions and disease progression. A usability evaluation of the web-based system showed that the information presented in the system was comparable to qualitative clinical observations and the system was recognized as a tool that will assist in the management of patients.

A web-based system for visualizing upper limb motor performance of Parkinson’s disease patients

Objective To design, develop and set up a web-based system for enabling graphical visualization of upper limb motor performance (ULMP) of Parkinson’s disease (PD) patients to clinicians. Background Sixty-five patients diagnosed with advanced PD have used a test battery, implemented in a touch-screen handheld computer, in their home environment settings over the course of a 3-year clinical study. The test items consisted of objective measures of ULMP through a set of upper limb motor tests (finger to tapping and spiral drawings). For the tapping tests, patients were asked to perform alternate tapping of two buttons as fast and accurate as possible, first using the right hand and then the left hand. The test duration was 20 seconds. For the spiral drawing test, patients traced a pre-drawn Archimedes spiral using the dominant hand, and the test was repeated 3 times per test occasion. In total, the study database consisted of symptom assessments during 10079 test occasions. Methods Visualization of ULMP The web-based system is used by two neurologists for assessing the performance of PD patients during motor tests collected over the course of the said study. The system employs animations, scatter plots and time series graphs to visualize the ULMP of patients to the neurologists. The performance during spiral tests is depicted by animating the three spiral drawings, allowing the neurologists to observe real-time accelerations or hesitations and sharp changes during the actual drawing process. The tapping performance is visualized by displaying different types of graphs. Information presented included distribution of taps over the two buttons, horizontal tap distance vs. time, vertical tap distance vs. time, and tapping reaction time over the test length. Assessments Different scales are utilized by the neurologists to assess the observed impairments. For the spiral drawing performance, the neurologists rated firstly the ‘impairment’ using a 0 (no impairment) – 10 (extremely severe) scale, secondly three kinematic properties: ‘drawing speed’, ‘irregularity’ and ‘hesitation’ using a 0 (normal) – 4 (extremely severe) scale, and thirdly the probable ‘cause’ for the said impairment using 3 choices including Tremor, Bradykinesia/Rigidity and Dyskinesia. For the tapping performance, a 0 (normal) – 4 (extremely severe) scale is used for first rating four tapping properties: ‘tapping speed’, ‘accuracy’, ‘fatigue’, ‘arrhythmia’, and then the ‘global tapping severity’ (GTS). To achieve a common basis for assessment, initially one neurologist (DN) performed preliminary ratings by browsing through the database to collect and rate at least 20 samples of each GTS level and at least 33 samples of each ‘cause’ category. These preliminary ratings were then observed by the two neurologists (DN and PG) to be used as templates for rating of tests afterwards. In another track, the system randomly selected one test occasion per patient and visualized its items, that is tapping and spiral drawings, to the two neurologists. Statistical methods Inter-rater agreements were assessed using weighted Kappa coefficient. The internal consistency of properties of tapping and spiral drawing tests were assessed using Cronbach’s α test. One-way ANOVA test followed by Tukey multiple comparisons test was used to test if mean scores of properties of tapping and spiral drawing tests were different among GTS and ‘cause’ categories, respectively. Results When rating tapping graphs, inter-rater agreements (Kappa) were as follows: GTS (0.61), ‘tapping speed’ (0.89), ‘accuracy’ (0.66), ‘fatigue’ (0.57) and ‘arrhythmia’ (0.33). The poor inter-rater agreement when assessing “arrhythmia” may be as a result of observation of different things in the graphs, among the two raters. When rating animated spirals, both raters had very good agreement when assessing severity of spiral drawings, that is, ‘impairment’ (0.85) and irregularity (0.72). However, there were poor agreements between the two raters when assessing ‘cause’ (0.38) and time-information properties like ‘drawing speed’ (0.25) and ‘hesitation’ (0.21). Tapping properties, that is ‘tapping speed’, ‘accuracy’, ‘fatigue’ and ‘arrhythmia’ had satisfactory internal consistency with a Cronbach’s α coefficient of 0.77. In general, the trends of mean scores of tapping properties worsened with increasing levels of GTS. The mean scores of the four properties were significantly different to each other, only at different levels. In contrast from tapping properties, kinematic properties of spirals, that is ‘drawing speed’, ‘irregularity’ and ‘hesitation’ had a questionable consistency among them with a coefficient of 0.66. Bradykinetic spirals were associated with more impaired speed (mean = 83.7 % worse, P < 0.001) and hesitation (mean = 77.8% worse, P < 0.001), compared to dyskinetic spirals. Both these ‘cause’ categories had similar mean scores of ‘impairment’ and ‘irregularity’. Conclusions In contrast from current approaches used in clinical setting for the assessment of PD symptoms, this system enables clinicians to animate easily and realistically the ULMP of patients who at the same time are at their homes. Dynamic access of visualized motor tests may also be useful when observing and evaluating therapy-related complications such as under- and over-medications. In future, we foresee to utilize these manual ratings for developing and validating computer methods for automating the process of assessing ULMP of PD patients.

Self-reported symptoms and motor tests via telemetry in a 36-month levodopa-carbidopa intestinal gel infusion trial

Objective To investigate if a home environment test battery can be used to measure effects of Parkinson’s disease (PD) treatment intervention and disease progression. Background Seventy-seven patients diagnosed with advanced PD were recruited in an open longitudinal 36-month study at 10 clinics in Sweden and Norway; 40 of them were treated with levodopa-carbidopa intestinal gel (LCIG) and 37 patients were candidates for switching from oral PD treatment to LCIG. They utilized a mobile device test battery, consisting of self-assessments of symptoms and objective measures of motor function through a set of fine motor tests (tapping and spiral drawings), in their homes. Both the LCIG-naïve and LCIG-non-naïve patients used the test battery four times per day during week-long test periods. Methods Assessments The LCIG-naïve patients used the test battery at baseline (before LCIG), month 0 (first visit; at least 3 months after intraduodenal LCIG), and thereafter quarterly for the first year and biannually for the second and third years. The LCIG-non-naïve patients used the test battery from the first visit, i.e. month 0. Out of the 77 patients, only 65 utilized the test battery; 35 were LCIG-non-naïve and 30 LCIG-naïve. In 20 of the LCIG-naïve patients, assessments with the test battery were available during oral treatment and at least one test period after having started infusion treatment. Three LCIG-naïve patients did not use the test battery at baseline but had at least one test period of assessments thereafter. Hence, n=23 in the LCIG-naïve group. In total, symptom assessments in the full sample (including both patient groups) were collected during 379 test periods and 10079 test occasions. For 369 of these test periods, clinical assessments including UPDRS and PDQ-39 were performed in afternoons at the start of the test periods. The repeated measurements of the test battery were processed and summarized into scores representing patients’ symptom severities over a test period, using statistical methods. Six conceptual dimensions were defined; four subjectively-reported: ‘walking’, ‘satisfied’, ‘dyskinesia’, and ‘off’ and two objectively-measured: ‘tapping’ and ‘spiral’. In addition, an ‘overall test score’ (OTS) was defined to represent the global health condition of the patient during a test period. Statistical methods Change in the test battery scores over time, that is at baseline and follow-up test periods, was assessed with linear mixed-effects models with patient ID as a random effect and test period as a fixed effect of interest. The within-patient variability of OTS was assessed using intra-class correlation coefficient (ICC), for the two patient groups. Correlations between clinical rating scores and test battery scores were assessed using Spearman’s rank correlations (rho). Results In LCIG-naïve patients, mean OTS compared to baseline was significantly improved from the first test period on LCIG treatment until month 24. However, there were no significant changes in mean OTS scores of LCIG-non-naïve patients, except for worse mean OTS at month 36 (p<0.01, n=16). The mean scores of all subjectively-reported dimensions improved significantly throughout the course of the study, except ‘walking’ at month 36 (p=0.41, n=4). However, there were no significant differences in mean scores of objectively-measured dimensions between baseline and other test periods, except improved ‘tapping’ at month 6 and month 36, and ‘spiral’ at month 3 (p<0.05). The LCIG-naïve patients had a higher within-subject variability in their OTS scores (ICC=0.67) compared to LCIG-non-naïve patients (ICC=0.71). The OTS correlated adequately with total UPDRS (rho=0.59) and total PDQ-39 (rho=0.59). Conclusions In this 3-year follow-up study of advanced PD patients treated with LCIG we found that it is possible to monitor PD progression over time using a home environment test battery. The significant improvements in the mean OTS scores indicate that the test battery is able to measure functional improvement with LCIG sustained over at least 24 months.

Faktorer av betydelse för livskvalitet efter stroke ur ett patientperspektiv : en systematisk litteraturstudie

Stroke är en allvarlig sjukdom som betraktas som den främsta orsaken till funktionsnedsätt-ning i vuxen ålder och kräver flest vårddagar på sjukhus. Syftet med denna studie var att analysera vilka faktorer som har betydelse för en persons livskvalitet efter genomgången stroke samt möjligheter för hälso- och sjukvårdspersonal att underlätta för strokepatienten att återfå sin livskvalitet. Studien genomfördes som en sammanställning av litteraturen med induktiv ansats där författarna granskade fyra studier med kvalitativ design och nio studier med kvantitativ design. Utmaningarna efter stroke är många för den som insjuknat. Livskvalitet påverkas inte enbart av de fysiska funktionsnedsättningar som stroke medför utan även av psykiska och sociala faktorer som till exempel depression, ångest, brist på socialt umgänge och fritidsaktiviteter. Kunskap, motivation och stöd var avgörande faktorer under återhämtningen och påverkade patientens följsamhet till rehabiliteringen. Studiens resultat visade att KUNSKAP om sjuk-domen, rehabiliteringen och de resurser som fanns att tillgå under den krävande återhämtningsprocessen var en viktig faktor för att strokepatienter skulle uppleva meningsfullhet med tillvaron och på så sätt uppleva livskvalitet. Kunskap ökade i sin tur MOTIVATIONEN vilket bidrog till att patienter valde att fortsätta vilja och orka återfå förlorade funktioner. För att detta skulle vara möjligt måste personer som drabbats av stroke erhålla STÖD i form av hjälp från familj och vänner samt olika insatser från hälso- och sjukvården.