Amyotrophic lateral sclerosis (ALS) is a fatal neurodegenerative disease that causes progressive autonomy loss and need for care. This does not only affect patients themselves, but also the patients’ informal caregivers (CGs) in their health, personal and professional lives. The big efforts of this multi-center study were not only to evaluate the caregivers’ burden and to identify its predictors, but it also should provide a specific understanding of the needs of ALS patients’ CGs and fill the gap of knowledge on their personal and work lives. Using standardized questionnaires, primary data from patients and their main informal CGs (n = 249) were collected. Patients’ functional status and disease severity were evaluated using the Barthel Index, the revised Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS-R) and the King’s Stages for ALS. The caregivers’ burden was recorded by the Zarit Burden Interview (ZBI). Comorbid anxiety and depression of caregivers were assessed by the Hospital Anxiety and Depression Scale. Additionally, the EuroQol Five Dimension Five Level Scale evaluated their health-related quality of life. The caregivers’ burden was high (mean ZBI = 26/88, 0 = no burden, ≥24 = highly burdened) and correlated with patients’ functional status (rp = −0.555, p < 0.001, n = 242). It was influenced by the CGs’ own mental health issues due to caregiving (+11.36, 95% CI [6.84; 15.87], p < 0.001), patients’ wheelchair dependency (+9.30, 95% CI [5.94; 12.66], p < 0.001) and was interrelated with the CGs’ depression (rp = 0.627, p < 0.001, n = 234), anxiety (rp = 0.550, p < 0.001, n = 234), and poorer physical condition (rp = −0.362, p < 0.001, n = 237). Moreover, female CGs showed symptoms of anxiety more often, which also correlated with the patients’ impairment in daily routine (rs = −0.280, p < 0.001, n = 169). As increasing disease severity, along with decreasing autonomy, was the main predictor of caregiver burden and showed to create relevant (negative) implications on CGs’ lives, patient care and supportive therapies should address this issue. Moreover, in order to preserve the mental and physical health of the CGs, new concepts of care have to focus on both, on not only patients but also their CGs and gender-associated specific issues. As caregiving in ALS also significantly influences the socioeconomic status by restrictions in CGs’ work lives and income, and the main reported needs being lack of psychological support and a high bureaucracy, the situation of CGs needs more attention. Apart from their own multi-disciplinary medical and psychological care, more support in care and patient management issues is required.

UNIVERZITA KARLOVA V PRAZE FAKULTA TĚLESNÉ VÝCHOVY A SPORTU The effect of physical activity and nutrition interventions on physical fitness and quality of life during the first year after kidney transplantation Abstract of disertation Zpracovala: Mgr. Klára Švagrová Školitel: Prof. Ing. Václav Bunc, CSc. Školící pracoviště: Laboratoř sportovní motoriky Praha, 2012 ABSTRACT Kidney transplantation is the best known treatment of chronic kidney failure. However, it is often accompanied by a number of health complications. The transplantation itself positively affects both physical fitness and quality of life during the first year after the transplant surgery which are seriously diminished when compared to the healthy population. This improvement can be even enhanced by appropriate physical activity and nutrition interventions otherwise both the physical fitness and quality of life would start declining after the first post-transplant year again. The aim of this study was to confirm a positive effect of a long-term physical activity and nutrition interventions on health-related physical fitness and health-related quality of life in a representative sample of individuals in the first year after the kidney transplantation. At the same time it was fundamental to verify that the experimental trial can be...

Bakgrund Kroniskt obstruktiv lungsjukdom (KOL) är en av de sjukdomar som orsakar flest dödsfall världen över. Personer med KOL når sällan upp till rekommenderade aktivitetsnivåer, kan erhålla ett långsammare sjukdomsförlopp, en bättre bättre livskvalitet (QoL), samt bättre hälso relaterad livskvalitet (HRQoL) om de upprätthåller rekomenderade fysiska aktivitetsnivåer.  Syfte Syftet med denna studie är att undersöka sambandet mellan objektivt mätt intensitet vid fysisk aktivitet och QoL samt HRQoL hos personer med KOL, samt skillnader mellan män och kvinnor. Vidare undersöka sambandet mellan objektivt mätt fysisk aktivitet mätt i antal steg och QoL samt HRQoL. Metod  Antal steg  i vardagen samt durationen i moderat till hög intensitet (MVPA) mättes objektivt med en accelerometer (DynaPort, McRoberts BV, The Netherlands). QoL mättes med en visuell ordinalskala i EuroQol-5D (EQ-5D) och HRQoL skattades med formulären COPD Assessment Test (CAT), Modified Medical Research Council Questionnaire (mMRC). Spearman´s rangkorrelationskoefficiet (rho) användes för att undersöka korrelationen i statistikprogramvaran Jamovi.  Resultat Sambandet mellan MVPA och QoL (EQ-5D) HRQoL (CAT, mMRC) samt HRQoL (CAT, mMRC)  för hela gruppen visade liten eller ingen korrelation förutom för mMRC som visade en låg korrelation, (rho= -.327, p= &lt;0.001). Sambandet mellan MVPA och QoL (EQ-5D)  samt  HRQoL (CAT, mMRC) för gruppen kvinnor visade alla på en liten eller ingen korrelation. Sambandet mellan MVPA och QoL (EQ-5D) samt HRQoL (CAT, mMRC) för gruppen män visade alla på en låg korrelation. Sambandet mellan antal steg och QoL (EQ-5D) samt HRQoL (CAT, mMRC) samt för hela gruppen visade på en låg korrelation förutom för CAT som visade en liten eller ingen korrelation. Slutsats  Resultatet i denna studie visade tecken på att personer med KOL som spenderar mer tid i MVPA skattar något bättre HRQoL utifrån lägre skattad dyspné jämfört de forskningspersoner som spenderar mindre tid på samma intensitet. Resultatet visade även att duration i MVPA och antal steg per dag är två variabler som kan ha minst lika stor betydelse bland personer med KOL, då de ska skatta QoL och HRQoL. Dataanalysen i denna studie visade även på att det fanns ett starkare samband för män vad gäller totalt tid spenderad i MVPA och QoL samt HRQoL än vad det gör för kvinnor.

Objectives The primary objective of this study was to investigate the effect of the video-based smartphone app ‘VIDEA bewegt’ over eight programme weeks on physical activity in German adults. - Design The study used a single-arm observational design, assessing the app’s effectiveness under real-life conditions. Data were collected from July 2019 to July 2020. - Setting The app is enabling users to access video-based educational content via their smartphone. A clinical visit or in-person contact was not required. Participants All individuals registered in the freely available app were invited to take part in the study. - Interventions The app aims to increase physical activity in everyday life. It combines educative videos on lifestyle-related benefits and instructional videos of strength and endurance exercises to do at home with motivational components like goal setting, documentation of progress and personalised messages. - Primary and secondary outcome measures Primary outcomes were physical activity based one MET minutes per week (metabolic equivalent) and step numbers. Secondary outcomes included physical self-efficacy (motivational, maintenance, recovery self-efficacy), health-related quality of life: Mental Health Component Summary score and Physical Health Component Summary score. - Results Of 97 people included in the data analysis, 55 successfully completed the programme and all questionnaires. Significant increases over eight programme weeks (between T0 and T2) were observed in physical activity based on MET minutes per week, health-related quality of life, and recovery self-efficacy. Time spent sitting and body mass index significantly decreased for those completing the programme. Conclusions Although significant benefits of physical activity were observed following a complete-case analysis, results should be dealt with caution. Studies with a larger and less heterogeneous sample and robust study designs able to measure causal effects would be desirable. Trial registration number DRKS00017392.

L'état des lieux de la qualité de vie liée à la santé (HRQoL) et les facteurs associés sont peu connus chez les travailleurs de première ligne pendant la pandémie de COVID-19 en Afrique subsaharienne. Cette étude a pour but d'évaluer la qualité de travailleurs de première ligne et d'identifier les facteurs corrélés dans sept pays d'Afrique de l'Est. Les résultats seront utilisés pour développer des interventions qui apportent un soutien aux travailleurs de première ligne durant et après la pandémie, en particulier dans des contextes à ressources limitées. Une enquête en ligne a été menée auprès de 721 travailleurs de première ligne pour cette étude transversale. L'enquête a permis de collecter des données sur le statut de la HRQoL et ses facteurs associés en utilisant des instruments validés. Les résultats principaux montrent que les caractéristiques personnelles telles que le niveau d'éducation, l'état matrimonial, la présence de maladies chroniques, ainsi que des facteurs de santé mentale tels que les souvenirs traumatiques, la dépression, l'insomnie, la détresse et le stress, et des facteurs liés à la COVID-19 tels que le test positif au virus, l'exposition aux patients COVID-19 et des niveaux élevés de peur, étaient les prédominant. Ces résultats sont cruciaux pour le développement d'interventions préventives et de contrôle durables visant à améliorer la HRQoL des travailleurs de première ligne pendant et après la pandémie de COVID-19, non seulement dans les pays d'Afrique de l'Est étudiés, mais aussi dans d'autres pays à faible ressource en Afrique et ailleurs. / The status of Health-Related Quality of Life (HRQoL) among frontline workers and its associated factors during the COVID-19 pandemic in Sub-Saharan Africa is poorly understood. This study aims to assess the HRQoL of frontline workers and identify correlated factors in seven Eastern African countries. The findings will be used to develop interventions that provide support for frontline workers during and after the pandemic, particularly in resource-limited settings. For this cross-sectional study, an online survey was conducted with 721 frontline workers. The survey collected data on the status of HRQoL and its associated factors using validated HRQoL instruments. The key findings show that personal characteristics such as education level, marital status, presence of chronic diseases, and mental health factors including traumatic memories, depression, insomnia, distress, and stress, as well as COVID-19-related factors such as testing positive for the virus, exposure to COVID-19 patients, and high levels of fear, were the most significant predictors of HRQoL among frontline workers in the Eastern African countries. These findings are crucial for developing sustainable preventive and control interventions to improve the HRQoL of frontline workers during and after the COVID-19 pandemic, not only in the Eastern African countries studied but also in other resource-poor settings in Sub-Saharan Africa and beyond.

Untersuchungsziel: Untersucht wurden Auswirkungen einer ambulanten orthopädischen Rehabilitation nach der Implantation einer Hüft- bzw. Knieendoprothese auf die individuelle Lebensqualität. Um zu erkennen, ob Zusammenhänge von individuellen Parametern wie Geschlecht, Alter, Bildungsstand und dem Rehabilitationsverlauf bzw. –ergebnis bestehen, wurden medizinisch-funktionelle und psychosoziale Daten erhoben, sowie ergänzende Variablen durch Schichtenindices und mittels eines strukturierten Interviews erfasst. Methode: Systematische Datenerhebung von medizinisch funktionellen (Gelenkbeweglichkeit, Muskelkraft) und psychosozialen (Aktivitäten des täglichen Lebens) Daten von n=60 Pat. mit Knie-TEP und n=61 Pat. mit Hüft-TEP zu vier Messzeitpunkten (Anfang Reha=t0, Ende Reha=t1, 6 Monate nach Reha= t2 und 24 Monate nach Reha= t3) und strukturiertes Interview zur Erfassung von soziodemographischen Merkmalen, Motivation und Behandlungszuversicht. Analysemethoden: Signifikanzanalyse und Berechnung der Effektstärke (Cohens d) der Veränderungen zwischen t0 – t1 für abhängige Stichproben (getrennt nach Indikation), Längsschnittdarstellung der funktionellen und psychosozialen Parameter mit deskriptivstatistischen Analysen getrennt nach Indikation und Geschlecht. Ergebnisse: Für beide Indikationen ergaben sich hohe Effekte für Verbesserungen der funktionellen Parameter und mittlere (teilhabebezogen) bzw. hohe (aktivitätsbezogen) Effekte bei den psychosozialen Parametern am Ende der Rehabilitation. Die teilstandardisierten Rehabilitationsmaßnahmen wirken sich indikations- und geschlechtsbezogen unterschiedlich aus. Unter Beachtung der psychophysischen Leistungsvoraussetzungen und sozialen Rahmenbedingungen ist die ambulante Rehabilitation gut geeignet für Patienten im höheren Lebensalter. / Study objective: Effects of an outpatient orthopedic rehabilitation after the implantation of a hip or knee replacement on the individual quality of life were studied. In order to analyze the existence of significant relationships between individual parameters such as gender, age, education and the rehabilitation outcome medical-functional and psychosocial data were collected, and additional layers of indices and variables by using a structured interview were applied. Method: Systematic data collection from medical functional (joint mobility, muscle strength) and psychosocial (activities of daily living) data of n = 60 patient with total knee replacement and n = 61 patient with total hip replacement to four time points (beginning of rehabilitation = t0, end rehab = t1, t2 = 6 months after rehabilitation and 24 months after discharge = t3) and structured interview for socio-demographic characteristics, motivation and confidence in treatment Analysis: Significance analysis and calculation of effect size (Cohen''s d) of the changes between t0 and t1 for dependent samples (separated by indication), longitudinal section view of the functional and psychosocial parameters with descriptive-statistical analyses apart from indication and sex Results: For both indications high effects of improvement in functional parameters, mean effects (participatory based) and high (activity-related) effects on the psycho-social parameters at the end of rehabilitation could be identified. The semi-standardized rehabilitation measures had shown differences by indication just like gender. In accordance with the psychophysical performance conditions and social environment outpatient rehabilitation is well suited for patients in advanced age.

Mit der vorliegenden Arbeit werden aktuelle Anwendungsbereiche der Lebensqualitätsforschung innerhalb der klinischen Medizin dargestellt. Besonderes Gewicht wurde dabei auf die Erläuterung der Grundlagen der Lebensqualitätsforschung und der derzeit verbreiteten Konzepte, die Diskussion aktueller und zukünftiger Messmethoden sowie die Darstellung einiger typischer Anwendungen gelegt. Der letzte Teil der Arbeit weist auf die bereits erkennbaren Grenzen und ethischen Konsequenzen dieser Forschungsrichtung hin. In der Habilitationsschrift werden verschiedene Originalarbeiten zusammengefasst, denen jeweils eine allgemeine Einführung zur leichteren thematische Einordnung vorangestellt ist. / This volume demonstrates the present scope of 'Quality of Life' research within a clinical context. Different chapters describe the foundations and the development of 'Quality of Life' research, presently used concepts, discussions about appropriate measurement models and some perspectives for an improvement of psychometric methods. Further, different applications and purposes to use 'Quality of Life' instruments in a clinical context are demonstrated. The last part discusses particular ethical consequences and other limitations of 'Quality of Life' research. All chapters combine introductory sections with published original works.

Background and aims Heart failure (HF) is a major cause of serious morbidity and death in the population and one of the leading medical causes of hospitalization among people older than 60 years. The aim of this thesis was to describe how to create and how to analyze a Heart Failure Registry with emphasis on Anemia and Quality of Life. (Paper I) We described the creation of the Swedish Heart Failure Registry (SwedeHF) as an instrument, which may help to optimize the handling of HF patients and show how the registry can be used to improve the management of patients with HF. (Paper II) In order to show how to analyze a HF registry we investigated the prevalence of anemia, its predictors, and its association with mortality and morbidity in a large cohort of unselected patients with HFrEF included in the SwedeHF, and to explore if there are subgroups of HF patients identifying high--‐risk patients in need of treatment. (Paper III) In order to show another way of analyzing a HF registry we assessed the prevalence of, associations with, and prognostic impact of anemia in patients with HFmrEF and HFpEF. (Paper IV) Finally we examined the usefulness of EQ--‐ 5D as a measure of patient--‐reported outcomes among HF patients using different analytical models and data from the SwedeHF, and comparing results about HRQoL for patients with HFpEF and HFrEF. Methods An observational study based on the SwedeHF database, consisting of about 70 variables, was undertaken to describe how a registry is created and can be used (Paper I). One comorbidity (anemia) was applied to different types of HF patients, HFrEF (EF &lt;40%) (II) and HFmrEF (EF 40--‐49% ) or HFpEF (&gt; 50%) (III) analyzing the data with different statistical methods. The usefulness of EQ--‐5D as measure of patient--‐ reported outcomes was studied and the results about HRQoL were compared for patients with HFpEF and HFrEF (IV). Results In the first paper (Paper I) we showed how to create a HF registry and presented some characteristics of the patients included, however not adjusted since this was not the purpose of the study. In the second paper (Paper II) we studied anemia in patients with HFrEF and found that the prevalence of anemia in HFrEF were 34 % and the most important independent predictors were higher age, male gender and renal dysfunction. One--‐year survival was 75 % with anemia vs. 81 % without (p&lt;0,001). In the matched cohort after propensity score the hazard ratio associated with anemia was for all--‐cause death 1.34. Anemia was associated with greater risk with lower age, male gender, EF 30--‐39%, and NYHA--‐class I--‐II. In the third paper (Paper III) we studied anemia in other types of HF patients and found that the prevalence in the overall cohort in patients with EF &gt; 40% was 42 %, in HFmrEF 38 % and in HFpEF (45%). Independent associations with anemia were HFpEF, male sex, higher age, worse New York Heart Association class and renal function, systolic blood pressure &lt;100 mmHg, heart rate ≥70 bpm, diabetes, and absence of atrial fibrillation. One--‐year survival with vs. without anemia was 74% vs. 89% in HFmrEF and 71% vs. 84% in HFpEF (p&lt;0.001 for all). Thus very similar results in paper II and III but in different types of HF patients. In the fourth paper (Paper IV) we studied the usefulness of EQ--‐5D in two groups of patients with HF (HFpEF and HFrEF)) and found that the mean EQ--‐5D index showed small reductions in both groups at follow--‐up. The patients in the HFpEF group reported worsening in all five dimensions, while those in the HFrEF group reported worsening in only three. The Paretian classification showed that 24% of the patients in the HFpEF group and 34% of those in the HFrEF group reported overall improvement while 43% and 39% reported overall worsening. Multiple logistic regressions showed that treatment in a cardiology clinic affected outcome in the HFrEF group but not in the HFpEF group (Paper IV). Conclusions The SwedeHF is a valuable tool for improving the management of patients with HF, since it enables participating centers to focus on their own potential for improving diagnoses and medical treatment, through the online reports (Paper I). Anemia is associated with higher age, male gender and renal dysfunction and increased risk of mortality and morbidity (II, III). The influence of anemia on mortality was significantly greater in younger patients in men and in those with more stable HF (Paper II, III). The usefulness of EQ--‐5D is dependent on the analytical method used. While the index showed minor differences between groups, analyses of specific dimensions showed different patterns of change in the two groups of patients (HFpEF and HFrEF). The Paretian classification identified subgroups that improved or worsened, and can therefore help to identify needs for improvement in health services (Paper IV).

No description available.

Background. The current understanding on caries and enamel developmental defects prevalence and frequency, caries risk, health-related quality life (HRQoL) and stress response in young children with cleft lip and/or palate (CL/P) are sparse. In this thesis these aspects were investigated in 5- and 10- year-old children with CL/P in comparison to non-cleft children in the same ages. Design. The studies in this thesis have a cross-sectional case-control design. Participants. The study group consisted of 139 children with CL/P (80 children aged 5 years and 59 aged 10 years) and 313 non-cleft controls (144 children aged 5 years and 169 aged 10 years). Method. Caries was scored according to International Caries Detection and Assessment System (ICDAS II) and developmental enamel defects were measured as presence and frequency of hypoplasia and hypomineralization. Oral hygiene was assessed using Quigley-Hein plaque index. Stimulated saliva samples were analyzed for mutans streptococci, lactobacilli, buffering capacity and secretion rates. Information regarding children’s oral hygiene routines, dietary habits and fluoride exposure were collected with questionnaires. Caries risk was evaluated with algorithm-based software, Cariogram while HRQoL was perceived with KIDSCREEN-52. Stress response was analyzed with cortisol concentration in saliva at three different time points using a commercial competitive radioimmunoassay. Results. Caries prevalence (36% versus 18%) and caries frequency (1.2 dmfs versus 0.9 dmfs) was significantly higher in 5-year-old children with CL/P in comparison to non-cleft controls. In 10-yearolds no significant difference was found between children with CL/P and non-cleft controls in caries prevalence (47% versus 38%) or in caries frequency (0.7 DMFS versus 0.5 DMFS). Children with CL/P had significantly higher prevalence of enamel defects, higher counts of salivary lactobacilli and less good oral hygiene. The odds of being categorized with high caries risk were elevated in children with CL/P. Children with CL/P had similar HRQoL and salivary cortisol concentrations as non-cleft controls. However, 10-year-old boys with CL/P had significantly higher cortisol concentrations in the evening than non-cleft boys. Conclusions. Preschool children with CL/P seem to have more caries in the primary dentition than non-cleft controls. Children with CL/P had increased odds of being categorized as high caries risk individuals compared to controls. Some of the contributing factors seem to be higher prevalence of enamel defects, impaired oral hygiene and elevated salivary lactobacilli. Furthermore, as measured with the help of cortisol concentrations in saliva, children with CL/P were not more stressed than noncleft controls and their HRQoL was comparable to a European norm population. It appears that regular comprehensive preventive oral care in children with CL/P is effective in preventing caries development in permanent teeth. However, children with CL/P are at risk of caries development and preventive oral care should be implemented and started earlier than today.