The overall aim of this thesis was to increase our understanding and knowledge of patients’ experiences of living with multiple sclerosis (MS). A mixed-method design was used, including both qualitative and quantitative methods. Thirty-one immunologically treated MS patients were randomly selected and matched with patients without immunological treatment. Matching criteria were gender, impairment, time since diagnosis and age. One patient dropped out and therefore the final sample consisted of 61 patients. All 61 were interviewed (Studies I, III and IV) and completed the 36-item Short Form health survey questionnaire (SF-36), the Subjective estimation of Quality of Life questionnaire (SQoL), the Self-reported Impairment Check-list (SIC) (Study II) and the Montgomery–Asberg Depression Rating Scale questionnaire (MADRS) (Study III). The interviews were subjected to content analysis. Initial symptoms and being diagnosed with MS were described in terms of becoming vulnerable and remaining in that vulnerability long after the diagnosis. Eventually the patients were able to manage this emotional distress and acquired strength in their illness situation (Study I). In the matched analysis, 29 pairs of patients were included after internal drop-out. There were no statistically significant differences between the treatment and control groups. Concerning the total group of 61 patients, the self-reported impairment check-list showed that they had various problems of impairment, most evident in balance and walking. The score on health-related quality of life (SF-36) was reduced, disclosing a negative influence on vitality, physical role and function. However, subjective quality of life (SQoL) was not reduced, showing that the patients estimated their well-being to be quite unaffected (Study II). Thirty-eight of the 61 patients (62%) experienced chronic sorrow (Study III). The group were not depressed in general, only four having mild symptoms of depression, revealing that chronic sorrow is a particular form of emotional distress in MS. Chronic sorrow was experienced in terms of loss of hope, loss of control over the body and loss of integrity and dignity. When the patients could not adequately manage their sorrow and lacked support, they were struggling with their vulnerability. In the successful management of MS, losses and emotional distress are managed in such a way as to enhance personal growth, appreciation and trust in life. The theoretical model of chronic sorrow facilitated the sorting of the empirical data and the linking of these data to theory, showing the usefulness of the model (Study IV).

Abstract The incidence of childhood onset type 1 diabetes in Finland has been the highest in the world for several decades. Optimal management of the disease presents a lifelong challenge to the affected individuals. Related complications are common and include an ocular pathology called diabetic retinopathy. Type 1 diabetes with its ramifications can impact on several facets of a patient’s physical and psychological well-being. This study aimed to assess the ophthalmic findings and to evaluate the characteristics of general well-being of a population-based cohort of paediatric patients with type 1 diabetes and a population-based cohort of young adults with type 1 diabetes since childhood. The prevalence and risk factors of diabetic retinopathy were assessed of the population-based paediatric cohort in the catchment area of the Northern Ostrobothnia Hospital District and these were compared to a similar paediatric cohort studied 18 years previously. There was no significant change in the overall prevalence of diabetic retinopathy (12%) during the study period. Furthermore, glycaemic balance and other risk factors of diabetic retinopathy had remained almost unchanged. A population-based cohort of young adults was evaluated in 2007 for the prevalence and severity of diabetic retinopathy. Most of the cohort subjects (94%) had developed diabetic retinopathy and in every third subject there was evidence of proliferative retinopathy. Health related quality of life was the same as that in the age- and gender-standardised control population. For the most part, the young adults with a long duration of type 1 diabetes fared equally well as the general population in the measured social aspects. However, proliferative diabetic retinopathy was associated with lower educational achievements and poorer health related quality of life as well as with a higher probability of unemployment or being pensioned. Glycaemic balance and prevalence of diabetic retinopathy have remained unchanged in paediatric cohorts for nearly two decades despite concurrent advances in care. Social well-being was mainly restricted in young adults exhibiting signs of proliferative diabetic retinopathy. The negative impact of advanced complications of type 1 diabetes already in these young adults highlights the importance of strict metabolic control to maintain overall well-being. / Tiivistelmä Lapsuusiässä alkavan tyypin 1 diabeteksen ilmaantuvuus on ollut Suomessa maailman korkein usean vuosikymmenen ajan. Hyvän hoitotasapainon ylläpitäminen on elinikäinen haaste sairastuneelle. Diabeteksen liitännäissairaudet ovat yleisiä, kuten myös silmänpohjissa todettava diabeettinen retinopatia. Tyypin 1 diabetes voi komplikaatioineen vaikuttaa laajasti potilaan fyysiseen ja psyykkiseen hyvinvointiin. Tässä tutkimuksessa pyrittiin arvioimaan silmien terveydentilaa ja yleiseen hyvinvointiin liittyviä tekijöitä tyypin 1 diabetesta sairastavien lasten sekä lapsena diabetekseen sairastuneiden nuorten aikuisten väestöpohjaisissa potilasaineistoissa. Diabeettisen retinopatian esiintyvyys ja riskitekijät tutkittiin väestöpohjaisessa lapsipotilasaineistossa Pohjois-Pohjanmaan sairaanhoitopiirin alueella ja tuloksia verrattiin vastaavaan 18 vuotta aiemmin tutkittuun potilasaineistoon. Diabeettisen retinopatian esiintyvyys (12 %) ei ollut merkittävästi muuttunut tutkimusaikana. Glykeeminen tasapaino ja muut diabeettisen retinopatian riskitekijät olivat pysyneet kohorttien välillä oleellisilta osin ennallaan. Lapsena sairastuneiden nuorten aikuisten väestöpohjaisesta potilasaineistosta arvioitiin diabeettisen retinopatian esiintyvyys ja vaikeusaste vuonna 2007. Enemmistölle potilaista (94 %) oli kehittynyt diabeettinen retinopatia ja kolmanneksella todettiin proliferatiivinen retinopatia. Terveyteen liittyvä elämänlaatu oli verrattavissa ikä- ja sukupuolivakioituun verrokkiväestöön. Sosiaalista hyvinvointia mittaavat tulokset olivat pääosin yhtäläiset muuhun väestöön verrattuna. Proliferatiivisella diabeettisella retinopatialla havaittiin kuitenkin yhteys huonompaan terveyteen liittyvään elämänlaatuun ja koulutustasoon sekä korkeampiin työttömyys- ja eläköitymislukuihin. Tutkitussa aineistossa lapsipotilaiden glykeeminen tasapaino sekä diabeettisen retinopatian esiintyvyys pysyivät ennallaan lähes kahden vuosikymmenen ajan hoitojen kehittymisestä huolimatta. Nuorten aikuisten sosiaalisessa hyvinvoinnissa esiintyi poikkeavuuksia lähinnä proliferatiivista diabeettista retinopatiaa sairastavilla. Tyypin 1 diabeteksen pitkälle edenneiden komplikaatioiden negatiivinen vaikutus jo nuorella aikuisiällä korostaa hyvän hoitotasapainon tärkeyttä yleisen elämänlaadun ylläpitämisessä.

Philosophiae Doctor - PhD / Validation of the OHIP-14 for a South African adult population using CFA resulted in a 12-item scale (OHIP-12) with excellent reliability (α =0.94), but the structural pathway varied across the socio-economic groups. The prevalence of oral pain was 19.4%, and varied significantly only across area-level SEP. Cost of care over the six months was estimated at about one billion Rand. Of those residing in the lowest SEP areas, 20.8% reported that they “did nothing” to relieve their last pain episode. Oral pain resulted in an average of two days lost per person from work/school over a six months period. The prevalence of OHIP was 16.2%. Those who had never visited a dental clinic had significantly better OHRQoL and less pain experience compared to those who previously visited a dental clinic. Both individual-level and area-level SEP were associated with OHRQoL in the bi-variate analysis, but these effects did not remain significant in multivariable-adjusted analysis. In particular, the respondents‟ race completely attenuated the effect of individual-level SEP on OHRQoL, while the experience of oral pain in the past six months completely attenuated the effect of area-level SEP on OHRQoL. Both absolute and relative inequality in oral health among the South African adult population was greater in the highest SEP areas than in the areas of lowest SEP

Les cardiopathies congénitales (CC) représentent la première cause d’anomalie malformative à la naissance. Les progrès considérables des années 80 (CEC néonatale, diagnostic prénatal) en ont modifié l’épidémiologie, avec un transfert de la mortalité de la pédiatrie à l’âge adulte. Dans ce contexte, l’évaluation de la qualité de vie liée à la santé (QdV) des enfants et adultes porteurs de CC devient un critère de jugement important, en recherche clinique comme dans les soins. Nous avons mené 4 études prospectives de QdV chez des patients avec CC: une étude chez 282 enfants de 8 à 18 ans avec CC comparés à 180 enfants contrôles; une étude sur 202 enfants avec CC corrélant QdV et VO2; une étude de QdV sur 208 adolescents et adultes porteurs d'HTAP sur CC; et une étude sur l’évolution de la QdV de 111 enfants sous AVK participant à un programme d’éducation thérapeutique. Les patients avec CC simple ont manifesté une QdV similaire à celle de la population générale. Ceux avec une cardiopathie complexe ont été préférentiellement impactés sur leur bien-être physique mais ont développé aussi des mécanismes de coping. En pédiatrie, l’évaluation de la QdV par les parents était plus péjorative mais parfois plus pertinente que celle des enfants. Nous avons mis en évidence le lien entre QdV et VO2 chez l’enfant cardiaque. Les résultats de nos travaux devraient permettre d’aider les cardiologues, cardiopédiatres et chirurgiens cardiaques dans leurs annonces diagnostiques, en particulier lors des moments cruciaux de notre sur-spécialité médico-chirurgicale: diagnostic prénatal, réanimation, transition vers l’âge adulte, prise en charge palliative d’une cardiopathie sévère. / Congenital heart diseases (CHD) are the leading cause of birth malformations. The tremendous progress since the 80’s (neonatal bypass, prenatal diagnosis) have changed the epidemiology, transferring mortality from pediatrics to adulthood. Therefore assessing the health-related quality of life (QoL) of children and adults suffering from CHD has become an important issue, in both clinical research and patients’ follow-up. We carried out 4 prospective QoL studies in patients with CHD: a study in 282 CHD children aged 8 to 18 compared with 180 controls; a study among 202 CHD children correlating their QoL scores to VO2; a QoL study among 208 adolescents and adults with PAH-CHD; and a study among 111 children in a therapeutic anticoagulation education program aiming to measure the evolution of their QoL. Patients with simple CHD showed a similar QoL to that of the control population. Those with complex heart diseases were preferentially affected in their physical well-being but also developed mechanisms of coping in other dimensions. In pediatrics, the evaluation of the QoL by parents is essential, sometimes more accurate than that of children themselves. As in previous studies in adults with heart failure, we found a significant relationship between QoL and physical performance during exercise in CHD children. The results of our work should help cardiologists, cardiac surgeons and pediatric cardiologists in their diagnostic announcement, especially during crucial moments of this medical and surgical subspecialty: prenatal diagnosis, intensive care, transition of care from adolescence to adulthood, palliative treatment of a complex CHD.

Objectif:La recherche en matière de qualité de vie va croissant. Cependant, il n'existe pas de consensus sur la définition de la qualité de vie. Le concept de qualité de vie fait l'objet d'un débat scientifique et philosophique. L'objectif de cette étude est de se demander comment une approche philosophique peut nous aider à renouveler notre compréhension du concept de Qualité de vie. Méthodes: Un état des lieux de la littérature pluridisciplinaire (philosophie [Antiquité-Epoque contemporaine] et santé publique [1977-2011]) a été conduit. Puis, nous nous sommes intéressés aux théories se rapportant aux mesures de la qualité de vie, au bonheur, satisfaction, préférences et autonomie, en identifiant les théories sous-jacentes. A l'issue de cette analyse, des attentes morales fondamentales des enfants ont été identifiées. Ces attentes morales sont des valeurs formalisées correspondant à quatre principes éthiques reconnus à l'échelle internationale, élaborés par Beauchamp et Childress, dans Les principes de l'éthique biomédicale. Ces principes constituent une plateforme consensuelle; basés sur ces principes: autonomie, bienfaisance, non-malfaisance et justice. Resultats:Les notions avec lesquelles la qualité de vie entre en interaction dans le domaine de la santé publique ne mettent pas assez l'accent sur les attentes morales des enfants. Afin d'évaluer l'applicabilité des principes éthiques dans le champ de la santé, nous avons sélectionné vingt-huit instruments de mesure de la qualité de vie. Ensuite, nous avons confronté ces instruments aux principes éthiques, afin de déterminer comment les instruments de mesures de qualité de vie explorent les attentes morales. / Aims: The number of researches on QOL is increasing. However, the QOL concept is characterized by lack of agreement and showed conceptual problems. The objective of our study is to understand how philosophy can help to renew our understanding of the QOL concept. Methods: Analytical process started with a literature review in Philosophy (Antiquity to contemporary) and Public Health (in Medline-1990-2010). Conceptualization and measurement theories of happiness, preference, satisfaction, and autonomy have been also studied in order to reveal the underlying theories. Through these concepts we have isolated patient's moral expectations. These moral expectations are formalized as values corresponding to the four ethical principles developed by Beauchamp and Childress, in The principles of biomedical ethics. These principles constitute a recognized consensual platform, based on the four international principles: autonomy, beneficence, non-maleficence and justice. Results: The Public Health approaches of QOL don't focus enough on the moral expectations of children. To assess the applicability of the principles in the field of health, we are chosen twenty-eight QOL's measurement instruments. Then, we confront these instruments to ethical principles, in order to determine how the moral expectations of children are explored. This confrontation has showed that all the instruments don't tackle the four fundamental moral expectations. Nevertheless, a change in perspective has taken place during these four decades: questionnaires made since the late 1990s put more emphasis on the four ethical principles.

The overall aim of the present thesis was to examine long-term psychological distress following cancer during adolescence and to develop a tailored psychological intervention to reduce cancer-related distress experienced by young survivors of adolescent cancer that was feasible and acceptable. Study I adopted a longitudinal design, assessing health-related quality of life (HRQOL) and symptoms of anxiety and depression among adolescents diagnosed with cancer from shortly after diagnosis (n=61) up to 10 years after diagnosis (n=28). Findings suggest that development of HRQOL and anxiety and depression is not linear and whilst the majority adjust well, a subgroup report long-term elevated distress. In Study II, experiences of cancer-related psychological distress were explored using unstructured interviews. Participants described cancer treatment as a mental challenge, felt marked and hindered by the cancer experience, and struggled with feelings of inadequacy and insecurity, existential issues, and difficulties handling emotions. Study III was a preliminary investigation of individualised cognitive behavioural therapy (CBT), alongside the identification and conceptualisation of cancer-related concerns using cognitive-behavioural theory. Significant difficulties with recruitment were encountered. Participants reported cancer-related concerns conceptualised as social avoidance, fear and avoidance of emotions and bodily symptoms, imbalance in activity, and worry and rumination. In Study IV, the acceptability and feasibility of an internet-administered CBT based self-help intervention (ICBT) for young persons diagnosed with cancer during adolescence was examined using an uncontrolled design and embedded process evaluation. The study protocol for Study IV was included in this thesis along with preliminary findings demonstrating significant difficulties with recruitment. Overall, findings suggest that whilst the majority of survivors of adolescent cancer adjust well over time a subgroup report elevated levels of distress and a range of distressing cancer-related experiences. A number of cancer-related difficulties were identified in Study II and III, which may be used to inform the development of future psychological treatments for the population. Preliminary investigation of the psychological interventions examined within this thesis further highlights the need for future development work to enhance the feasibility and acceptability of psychological support for the population.

The concept of health-related quality of life (HRQoL) had been used as a patient reported outcome measure in healthcare settings. It has been conceptualised and measured using validated instruments in the Western scientific community. However, in the Saudi literature, the true meaning of this concept is still lacking. The aim of this study is to explore the gap in literature and define the concept of HRQoL, identify its key domains and conceptualise it as perceived specifically by patients with renal failure and undergoing haemodialysis in Saudi Arabia. This PhD included two strands, an empirical qualitative study and a critical analysis of the HRQoL concept and its measurement in the Western as well as the Saudi literature. Using qualitative research methods, the empirical study was conducted in one centre in the Eastern Region of Saudi Arabia. Twenty two In-depth qualitative interviews were conducted in the Arabic language, recorded, transcribed and translated into English. Thematic analysis was performed to analyse the data as the transcripts were coded, the categories identified and the themes generated. The conceptual analysis of HRQoL was carried out after the review of the Western literature on the quality of life (QoL) conceptual models and the measuring instruments used in renal literature. Systematic review of the Saudi HRQoL literature was performed as well to understand the meaning and methods of measurement of the concept of HRQoL. The conceptual analysis of HRQoL revealed that the concept is poorly defined in the Saudi literature; its measurement was based on instruments that are not culturally-adapted. Hence the findings are subjected to questions of validity and reliability. The QoL conceptual models have been developing in the Western literature as well as measuring instruments for patients with renal failure. However, the adoption of these models or instruments is critical due to social, cultural and religious variations between Saudi Arabia and the Western societies. Seven themes defining HRQoL emerged from the qualitative data; these reflected the subjectivity of the concept. The domains of HRQoL were the physiological, social, psychological, religious and vocational domains. Each of those domains was defined by determinants that affect other domains and the overall HRQoL. These were synthesised into a single definition, which incorporated all five domains. A model of HRQoL of patients undergoing haemodialysis in Saudi Arabia was developed explaining the relationship between the key domains and HRQoL. Healthcare services were discussed as a factor that affects the health status of patients and plays an indirect role in the life quality of this patient group. Hence it was considered as a factor rather than a domain. This study, including the conceptual analysis and the empirical study, illustrates that the concept of HRQoL is highly individual and is affected by the views of individuals living in a specific culture. Additionally, it is affected by the social, cultural and religious backgrounds of those individuals. The conceptualisation of HRQoL in this study was almost similar to the Western conceptualisation, however, the relationships between the key domains of HRQoL and their determinants differed. The social and religious domains were highly influenced by the Arabic culture and the Islamic religion. HRQoL in patients with ESRD in the Eastern Region of Saudi Arabia has a different meaning and conceptualisation from that seen in comparable Western literature. The assessment of HRQoL of patients with renal failure and on haemodialysis in Saudi Arabia requires a culturally-adapted instrument. This would ensure valid and reliable results that could be used in decision-making and the planning of care.

Bakgrund: Hjärt-och kärlsjukdomar är den vanligaste dödsorsaken i världen. En behandlingsform som skyddar mot hjärt-och kärlsjukdomar i form av plötslig hjärtdöd och livshotande arytmier är en Implanterbar Cardioverter Defibrillator (ICD). ICD-apparaten kan bland annat avge defibrilleringar när hjärtats rytm avviker från normal sinusrytm. Hälsorelaterad livskvalitet kan mätas för att avgöra hur en viss behandling påverkar människors livskvalitet. Hälsorelaterad livskvalitet kan mätas med hjälp av olika mätskalor. Skalorna undersöker bland annat patienters hälsostatus, emotionell och psykisk funktion och hur dessa påverkar det sociala och dagliga livet. Begreppet kan även brytas ner till olika domäner i form av generell livskvalitet samt psykiska domän i form av depression och ångest. Syfte: Syftet med litteraturstudien var att undersöka hur ICD-behandlingen påverkar den hälsorelaterade livskvaliteten hos personer med en implanterbar ICD. Metod: En litteraturstudie med kvantitativ ansats tillämpades och baserades på tolv vetenskapliga artiklar. Resultat: Den hälsorelaterade livskvaliteten hos hjärtsjuka patienter inför en ICD-behandling var signifikant försämrad, i jämförelse med generell befolkning. Den rapporterade livskvaliteten hos hjärtsjuka människor uppmättes som lägst kort innan en ICD-implantation och ICD-behandlingen utgav en signifikant förbättring på livskvaliteten, sex till tolv månader efter implantionen. Ångestrelaterade tankar, depression, den emotionella, psykiska och mentala hälsan angav förbättrade resultat när patienterna fått ICD-behandling, i jämförelse med hur den hälsorelaterade livskvaliteten hos patienterna var före behandlingen. Konklusion: Den hälsorelaterade livskvaliteten tenderade att höjas hos hjärtsjuka patienter som fått en implanterad ICD. Utan ICD-behandling uppmätte hjärtsjuka patienter en signifikant försämrad livskvalitet, i jämförelse med generell befolkning. Däremot försvann den signifikanta skillnaden i hälsorelaterad livskvaliteten mellan hjärtsjuka patienter och generell befolkning efter att de hjärtsjuka erhållit en ICD-behandling. / Background: Heart-diseases are the most common cause of death in the whole world. Treatment that could possibly save patients from sudden cardiac arrest and life-threatening arrhythmias is the Implantable Cardioverter Defibrillator (ICD). The ICD can for instance give defibrillations when the heart departs from regular sinus rhythm. Health-related quality of life can be measured to assess how a certain treatment is affecting peoples’ quality of life. ICD-treatment can be measured in health-related quality of life. Health-related quality of life can be measured with help of different types of measurements and scales. It investigates the patients’ health-status and physical and emotional function and in which way it impacts the daily and social life. Health-related quality of life is a huge concept that can be divided in to smaller domains, like general quality of life and physical symptoms like depression and anxiety. Aim: The aim of this study was to investigate how ICD-treatment infects patients’ health-related quality of life.Method: A literature review with quantitative study-design, based on twelve scientific articles. Result: The health-related quality of life in patients with cardiac problems who are facing an ICD-treatment were significant worse, in comparison with the general population. However, the reported quality of life in patients with cardiac problems was measured at its lowest shortly before the ICD-implantation and the ICD-treatment had a significant improvement on the quality of life, six to twelve months after the implantation. Anxiety-related thoughts, depression, the emotional, physical and mental health indicated a better result when the patients with cardiac problems received an implantable ICD, in comparison with how the health-related quality of life were before the treatment. Conclusion: The health-related quality of life tends to increase after the patients with cardiac problems received an ICD. Without the ICD-treatment, the patients with cardiac problems measure a significantly worse quality of life, in comparison to the general population. However, the significantly worse impact on the quality of life in patients with cardiac problems in comparison with the general population, disappeared after the patients received an ICD.

Bakgrund: Endometrios definieras som närvaro av livmoderslemhinnans vävnad utanför livmodern och är en inflammatorisk, östrogen-relaterad sjukdom som drabbar personer i fertil ålder. En individens fysiska och mentala hälsa påverkas negativt till följd av endometrios-relaterad smärta. Alla personer rekommenderas att vara fysisk aktiva eftersom det ger hälsofördelar.    Syfte: Syftet var att undersöka fysisk aktivitet, fysisk träning och vardagsmotion, och upplevd hälsorelaterad livskvalitet hos personer med endometrios, samt att undersöka om det fanns ett samband mellan fysisk aktivitet och upplevd hälsorelaterad livskvalitet.    Metod: Studien var en kvantitativ icke-experimentell tvärsnittsstudie med deskriptiv design.  Konstaterad endometiosdiagos, minst 15 års ålder samt medlem i någon av de större Facebookgrupperna kring endometrios i Sverige var inklusionskriterier för studien. Fysisk aktivitet studerades med hjälp av socialstyrelsens indikatorfrågor. Fysisk aktivitet räknades om till index 3-19, höga värden visar hög fysisk aktivitet. Hälsorelaterad livskvalitet mättes med EHP-30. Index på EHP-30 räknades om till 0-100, där låga värden indikerar god livskvalitet. Korrelation studerades med hjälp av Spearmans rangkorrelationstest.   Resultat: Av 261 deltagare var resultatet för medianen för fysisk aktivitet 10, vilket är under 150 minuter fysisk aktivitet/vecka. Avseende hälsorelaterad livskvalitet var median 55,8, vilket påvisade en påverkad hälsorelaterad livskvalitet.  Det fanns ett svagt samband mellan fysisk aktivitet och hälsorelaterad livskvalitet (r=-0,3 och p <0,001).  Slutsats: Det var ett svagt samband mellan fysisk aktivitet och hälsorelaterad livskvalitet hos personer med endometrios. / Background: Endometriosis is defined as uterine lining tissue outside the uterus and is an inflammatory, estrogen-related disease that affects people of fertile age. An individual's physical and mental health is negatively affected by endometriosis-related pain. All people should be physically active because of the health- benefits.    Objective: The purpose was to examine physical activity, physical exercise and everyday exercise, and perceived health-related quality of life in people with endometriosis, also to investigate the correlation between physical activity and health-related quality of life.   Methods: The study was a quantitative non-experimental cross-sectional study with descriptive design.  Endometriosis diagnosis, a minimum of 15 years and a member of one of the large Facebookgroups about endometriosis in Sweden were the inclusion criteria. Physical activity was studied using the National Board of Health and Welfare's physical activity questions. The index was converted to 3-19, high scores show high physical activity. Health-related quality of life was measured with EHP-30. The index was converted to 0-100, low scores indicate good quality of life. Correlation was studied with Spearman's rank correlation test.    Results: Of 261 participants, the median result for physical activity was 10, less than 150 minutes/week of physical activity. In Health-related quality of life the median results were 55,8, an affected health related quality of life. There was a weak correlation between physical activity and health related quality of life (r = -0.3 and p <0.001).    Conclusion: There was a weak correlation between physical activity and health related quality of life.

Introduction: We investigated the health-related quality of life (HRQoL) of long-term prostate cancer patients who received leuprorelin acetate in microcapsules (LAM) for androgen-deprivation therapy (ADT). Methods: The observational study was carried out by 30 office-based German urologists in 536 prostate cancer (PCa) patients treated for ≥5 years with LAM and in 116 patients of an age-matched control group (CG). Data on HRQoL and health status was collected prospectively using validated questionnaires QLQ-C30, QLQ-PR25 and Karnofsky Index. Data on effectiveness (clinical response, prostate specific antigen [PSA], testosterone) and safety was collected retrospectively from patients’ health records. We used descriptive statistics to analyze the data. Results: The mean treatment duration was 8.6 years (range 4.5–19.8 years). General health status (QLQ-C30) was comparable for both groups. Differences were observed regarding physical – and role functioning. ADT patients rated single items slightly worse than CG. Karnofsky-Index showed comparable high values (median of 90%). QLQ-PR25 revealed more PCa-related symptoms for ADT patients. Within 6 months, median PSA level declined >90% and median testosterone levels declined below castration level from 4.0 to 0.2 ng/mL. Clinical response (European Organisation for Research and Treatment of Cancer criteria) was observed in at least 90% of ADT patients. Conclusions: Long-term ADT with LAM is a well-accepted, tolerated, effective, and low-burden treatment option for patients with advanced, hormone-sensitive PCa.