This thesis describes patients in acute postoperative pain as well as patients with acute cancer-related pain in palliative care, and their experiences and perceptions of pain management in relation to HRQOL and the multidimensionality of pain. A combination of qualitative and quantitative methods was chosen. Data were collected using interviews and questionnaires; APS, SF:36 and a new developed questionnaire PC-PPQ measuring care related to pain management in palliative care. For assessing pain VAS and Pain-o-Meter were used. The study group consisted of 100 patients on their second postoperative day, and of 75 patients with cancer-related pain from two palliative care teams. The result showed that at the time of the interview 29 of the patients with postoperative pain reported a pain > 3 on VAS and 79 reported VAS > 3 as worst pain past 24 hours. The higher the intensity of pain the less satisfied the postoperative patients were with the nurses´ way of treating their pain. Thirty-three patients stated that they had received information regarding the importance of pain relief. Patients with postoperative pain as well as patients with cancer-related pain had been prescribed analgesics mostly a combination of Paracetamol, NSAID and opioid. Of the 75 patients with cancer-related pain and in palliative care 22 patients reported pain >3 on POM-VAS and 47 patients reported >3 on POM-VAS as worst pain past 24 hours. Twenty-eight patients reported an average pain > 3 on POM-VAS past 24 hours. Twenty-four patients used the words troublesome or tiring when describing their affective pain. Sensory pain was described as prickling or sore by 15 patients. The patients perceived their pain as “aching all over” and expressed a wish for pain relief as well as a fear for increased pain. HRQOL especially physical functioning decreased for patients with average pain > 3. Being cared for by a nurseled or a physician-led palliative care team indicated no statistically significant differences for patients´ HRQOL or pain intensities. The patients had experienced a statistically significant better care after being referred to a palliative care team, despite that pain control had not been optimized. Patients expressed a need for communication, planning and trust in order to improve pain management. Continuity of care and the opportunity to talk increase the patients feeling of security, as well as improved their perceived pain control. Structured ongoing discussion concerning pain management from an early stage of the disease or already preoperatively can provide an important intervention to meet the results of this thesis. Pain assessment covering the multidimensionality of pain, and pain treatment plans including both pharmacological and non-pharmacological treatment are further important interventions.

Background and aims: Heart failure (HF) is a life threatening condition and optimal handling is necessary to reduce risk of therapy failure. The aims of this thesis were: (Paper I) to examine whether BNP (B-type natriuretic peptide)-guided HF treatment improves morbidity and mortality when compared with HF therapy implemented by a treating physician at sites experienced in managing patients with HF according to guidelines; (Paper II) to investigate how to define a responder regarding optimal cut-off level of BNP to predict death, need for hospitalisation, and worsening HF and to determine the optimal time to apply the chosen cut-off value; (Paper III) to evaluate how Health-Related Quality of Life (HR-QoL) is influenced by natriuretic peptide guiding and to study how HR-QoL is affected in responders compared to non-responders; (Paper IV) to evaluate the impact of patient age on clinical outcomes, and to evaluate the impact of duration of the HF disease on outcomes and the impact of age and HF duration on BNP concentration. Methods: A randomized, parallel group, multi-centre study was undertaken on 279 patients with HF and who had experienced an episode of worsening HF with increased BNP concentration. The control group (n=132) was treated according to HF guidelines and in the BNP-guided group (n=147) the HF treatment algorithm goal was to reduce BNP concentration to < 150 ng/L in patients < 75 years and <300 ng/L in patients > 75 years (Paper I), and to define the optimal percentage decrease in BNP and at what point during the follow-up to apply the definition (Paper II). To compare the BNP-guided group with the conventional HF treated group (Paper I), and responders and non-responders (Paper II) regarding HR-QoL measured with Short Form 36 (SF-36) at study start and at study end (Paper III) and to evaluate if age or HF duration influenced the HF outcomes and the influence of BNP on age and HF duration (Paper IV). Results: The primary outcome (mortality, hospitalisation and worsening HF) was not improved by BNP-guided HF treatment compared to conventional HF treatment or in any of the secondary outcome variables (Paper I). Applying a BNP decrease of at least 40 percent in week 16 (compared to study start) and/or a BNP<300 ng/L demonstrated the best risk reduction for cardiovascular mortality, by 78 percent and 89 percent respectively for HF mortality (Paper II). The HR-QoL improved in four domains in the BNP-guided group and in the control group in six of eight domains; however there were no significant differences between the groups (Paper III). For responders the within group analysis showed improvement in four domains compared to the non-responders that improved in one domain; however there were no significant differences between the two groups. There were improvements in HR-QoL in all four groups (Paper III). Age did not influence outcome but HF duration did. HF duration was divided into three groups: HF duration less than 1 year (group 1), 1-5 years (group 2) and >5 years (group 3). A 1.65-fold increased risk could be demonstrated in those with HF duration of more than five years compared to patients with short HF duration. The BNP concentration was increased with increased age, and there was a better response regarding BNP decrease in NP-guiding in patients with short HF duration, independent of age (Paper IV). Conclusions: There were no significant differences between BNP-guided HF treatment group and the group with conventional HF treatment as regards mortality, hospitalisation or HR-QoL. The responders to HF treatment showed a significantly better outcome in mortality and hospitalisation compared to non-responders but no significant differences in HR-QoL. The duration of HF might be an important factor to consider in HF treatment by BNP-guiding in the future.

By examining barriers to care, health professionals can better understand what disparities exist between groups and who may be at greater risk for poor primary care. Researchers have highlighted the need for additional research that focuses on the extent of unmet needs for U.S. children with sickle cell disease (SCD). The purpose of this quantitative study was to compare the differences between parents who are in a SCD support group and those who are not. The theoretical framework of this study is based on the chronic care model and social support theory. A total of 128 parents of children with SCD completed the study survey. The sampling occurred by e-mail, phone, and face-to-face conversations. Selection criteria for potential participants in both groups were based on their children being diagnosed with SCD. Seventy-four participants (57.8%) were members of a SCD support group, and 54 participants (42.4%) were not members of a SCD support group. In this study, the independent variables were parents attending or not a SCD support group. The t test and MANCOVA was used to assessed the association between perceptions of barriers to care and support group status. However, statistical analysis showed no significant results. The null hypothesis was not rejected. Therefore, the positive social change implication is to further explore potential factors that may shape perceptions of barriers to care for those with SCD so that perceived barriers to care can be overcome.

By examining barriers to care, health professionals can better understand what disparities exist between groups and who may be at greater risk for poor primary care. Researchers have highlighted the need for additional research that focuses on the extent of unmet needs for U.S. children with sickle cell disease (SCD). The purpose of this quantitative study was to compare the differences between parents who are in a SCD support group and those who are not. The theoretical framework of this study is based on the chronic care model and social support theory. A total of 128 parents of children with SCD completed the study survey. The sampling occurred by e-mail, phone, and face-to-face conversations. Selection criteria for potential participants in both groups were based on their children being diagnosed with SCD. Seventy-four participants (57.8%) were members of a SCD support group, and 54 participants (42.4%) were not members of a SCD support group. In this study, the independent variables were parents attending or not a SCD support group. The t test and MANCOVA was used to assessed the association between perceptions of barriers to care and support group status. However, statistical analysis showed no significant results. The null hypothesis was not rejected. Therefore, the positive social change implication is to further explore potential factors that may shape perceptions of barriers to care for those with SCD so that perceived barriers to care can be overcome.

From a BPS perspective, COPD and other chronic diseases may have a significant negative impact on those living with them and may be associated with higher rates of depression and anxiety and lower levels of health-related quality of life (HRQOL). Certain factors, such as spirituality, may influence the negative impact of chronic disease on the relationship between mood and functional independence and HRQOL. Also, gender may influence the relationship between mood, spirituality, and HRQOL for men and women living with chronic diseases. The current study included 136 patients undergoing physical rehabilitation at an IRF. Anxiety, depression, spirituality, HRQOL, and functional independence were evaluated for all. Mediation models were tested to determine the impact of spirituality on the relationships between mood and HRQOL and functional independence, and moderation models were tested to evaluate the impact of gender on the relationships between mood, spirituality, functional independence, and HRQOL. The current study yielded some inconclusive results but did evidence that COPD patients in acute inpatient physical rehabilitation facilities (IRF) have higher levels of anxiety than patients without COPD and also revealed that men with COPD have better HRQOL than do women with COPD. Spirituality was found to partially mediate the relationship between depression and HRQOL in IRF patients with COPD, but gender did not appear to moderate the relationships between mood, spirituality, functional independence, or HRQOL in IRF patients. As few studies on IRF patients with chronic diseases exist, continuing to evaluate patients in IRFs is important to enhance our BPS understanding of chronic disease.

Background: Oral and dental diseases is a major part of the global disease burden. Poor oral health has a significant impact on the general well-being of people. In contrast with prior decades high rates of oral diseases may be found in low- and middle income countries. Populations that are particularly vulnerable are more likely to develop poor oral health. As a consequence of human distress related to war, poverty and natural disasters the accomplishments of humanitarian aid organizations has a direct impact on people´s health and well-being. Purpose: The aim of the present study is to examine the International Red Cross and Red Crescent Movement as well as Doctors without borders concerning documents and guidelines on oral health. A further aim is to explore the knowledge of oral health related topics of delegates from the International Federation of the Red Cross and Red Crescent Societies (IFRC). Method: The study is designed as a literature review and a questionnaire survey. Results: Within the International Red Cross and Red Crescent Movement and Doctors Without Borders there are a limited number of guidelines on oral health and they are rarely mentioned in the same documents as non-communicable diseases (NCDs). The responses of the study revealed that the participants generally have a limited knowledge about measures on oral health in the IFRC. Conclusion: Both the literature review and the questionnaire survey study confirms that there is an absence of clear and specific guidelines on oral health care related activities within IFRC. / Bakgrund: Mun- och tandsjukdomar utgör en stor del av den globala sjukdomsbördan. Dålig mun- och tandhälsa har en stark påverkan på det allmänna välbefinnandet. I motsats till tidigare, ses idag höga frekvenser av karies även i låg- och medelinkomstländer. Populationer vilka befinner sig i extra utsatta kontexter löper större risk att utveckla dålig munhälsa. Som en följd av mänskligt lidande i form av händelser relaterade till krig, fattigdom och naturkatastrofer har aktiviteter utförda av humanitära hjälporganisationer en direkt inverkan på hälsa och välbefinnande. Syfte: Syftet med föreliggande studie är att studera dokument och riktlinjer rörande munhälsa inom Internationella Röda korset och Röda halvmånen och Läkare utan gränser. Ett ytterligare syfte är att undersöka kunskapen om hälsorelaterade frågor kring munhälsa hos delegater från Internationella federationen för Röda Korset och Röda Halvmånen (IFRC). Metod: Studien är utförd som en litteratur-sammanställning och som en enkätundersökning. Resultat: Inom Internationella Röda korset och Röda halvmånen samt Läkare utan gränser återfinns begränsat antal riktlinjer rörande oral hälsa vilka dock sällan nämns i samma dokument som icke-smittsamma sjukdomar (NCDs). Av enkätsvaren i studien framgår det att de medverkande generellt har en begränsad kunskap kring åtgärder rörande munhälsa inom IFRC. Konklusion: Deltagarna i denna studie bekräftar resultaten i litteraturstudien om en avsaknad av tydliga och konkreta riktlinjer för munhygienrelaterade aktiviteter inom IFRC.

Background: Diabetes is a common and costly disease that is expected to continue even to grow in prevalence and health expenditures over the coming decades. Type 2 diabetes is the most common diabetes type and is characterized by insulin resistance and relative insulin deficiency. Type 2 diabetes develops over a long period and is often undetected over years. During this time, people almost always first develop any of the pre-diabetic states, i.e. impaired fasting glucose (IFG), impaired glucose tolerance (IGT) or a combination of both (IFG&IGT). This thesis focuses on type 2 diabetes only. In the following, the term diabetes is used to refer to type 2 diabetes only. Diabetes is associated with a sedentary lifestyle and obesity. While those are not the only factors contributing to the development and maintenance of diabetes, several studies have shown that prevention of diabetes among individuals at high risk through lifestyle change is possible, effective and cost-effective, especially targeting diet and exercise to reduce weight. No previous study had, however, estimated the cost-effectiveness of diabetes prevention strategies from a population-based perspective including healthy individuals and also considered IFG and IGT as two distinct pre-diabetic states. Objective: The overall objective of this thesis was to establish, describe and evaluate a model that can assess the cost-effectiveness of lifestyle intervention programs to prevent diabetes. Methods: First, a Markov Model was established using data from the literature. The cost of a German diabetes prevention program was estimated. Second, risk equations for change to worsened glucose states were estimated using factor analysis and logistic regression based on consecutive data from the Västerbotten Intervention Program (VIP). The risk equations described transition probabilities in the final model and were based on several risk factors such as age, sex, physical activity and smoking status. Third, information on the Short-Form 36 questionnaire from the VIP population was transformed into Short-Form 6D. Health utility weights (HUW) by glucose group and four risk factors were estimated using beta regression. Fourth, an updated Markov model was established using an updated model structure compared to the one in Paper I, program costs of Paper I, risk equations of Paper II, health utility weights of Paper III and updated cost and mortality estimates. Results: The first model in Paper I showed that lifestyle intervention programs have the potential to be cost-effective with a high degree of uncertainty. The risk equations in Paper II indicated that the impact of each risk factor depended on the starting and ending pre-diabetes state, where high levels of triglyceride, hypertension, and high body mass index were the strongest risk factors to transit to a worsened glucose state. The overall mean HUW in Paper III was 0.764 with healthy individuals having the highest HUW, those with diabetes the lowest and those in pre-diabetic states ranging in between. The intervention described in Paper IV was cost-effective for all sex and age scenarios ranging from 3,833 EUR/QALY gained (women, 30 years) to 9,215 EUR/QALY gained (men, 70 years). The probability that the intervention is cost-effective was high (85.0-91.1%). Conclusion: We established a model that can estimate the cost-effectiveness of different scenarios of initiatives to prevent diabetes. The prevention or the delay of the onset of diabetes is feasible and cost-effective. A small investment in a healthy lifestyle with the change in physical activity and diet together with weight loss can have a decent, cost-effective result. The full range of possibilities this model offers has not been evaluated so far. We have, however, shown that implementing a lifestyle intervention program like the Västerbotten Intervention Programme would be cost-effective.

Malgré un intérêt grandissant pour la question du devenir des survivants de tumeur cérébrale pédiatrique, l’évaluation de leur équilibre est souvent négligée. Les objectifs de nos travaux étaient de 1) examiner les écrits portant sur l’équilibre chez les survivants de tumeur cérébrale pédiatrique; 2) comparer l'équilibre debout et la qualité de vie entre les survivants et un groupe d’enfants témoins; et 3) examiner l'association entre l'équilibre debout et qualité de vie chez les survivants. Notre recension des écrits démontra que les survivants de tumeur cérébrale présentent des troubles de l’équilibre, mais les limites méthodologiques des études nous empêchent de conclure de manière définitive. Ensuite, nous avons recruté un groupe d’enfants survivants d’une tumeur cérébrale de la fosse postérieure et un groupe d’enfants sains. Leur équilibre était évalué à l’aide du Bruininks-Oseretsky Test of Motor Proficiency-2nd edition (BOT-2) et du Pediatric Balance Scale (PBS). Certains participants ont aussi été évalués avec une plate-forme de force où les limites de stabilité étaient documentées. Finalement, tous les enfants et leurs parents remplissaient le Pediatric Quality of Life Inventory (PedsQL4.0). Nos résultats démontrent que les survivants présentent une diminution de l’équilibre mise en évidence par le BOT-2, mais que leur qualité de vie est similaire aux enfants sains. La performance au BOT-2 est associée à la dimension physique du PedsQL4.0, suggérant une relation entre l’équilibre et la qualité de vie. Nos résultats suggèrent qu’une évaluation de l’équilibre pourrait être bénéfique chez cette clientèle afin de mieux cerner ses besoins de réadaptation. / There is growing interest in studying outcomes in survivors of pediatric brain tumours. Physical outcomes, especially balance abilities, are less investigated. Objectives of this thesis are to: 1) examine the literature for balance outcomes in survivors of pediatric brain tumours, 2) compare standing balance and health-related quality of life (HRQOL) between survivors of pediatric posterior fossa brain tumours (PFBT) and typically-developing controls and 3) explore the association between balance and HRQOL. A comprehensive review demonstrated that although the literature suggests that survivors of pediatric brain tumours display ongoing balance deficits, studies have limitations, emphasizing the need for further research. Survivors of pediatric PFBT and typically-developing children were recruited and their balance assessed with the Bruininks-Oseretsky Test of Motor Proficiency-2nd edition (BOT-2) and Pediatric Balance Scale (PBS). Dynamic balance was also evaluated for some participants using a force platform. The Pediatric Quality of Life Inventory measured HRQOL. Statistical analyses included Mann-Whitney U tests to compare results between groups and Spearman's rank correlation coefficient to determine the association between balance and HRQOL. Balance abilities were significantly worse in survivors as measured by the BOT-2. The PBS displayed a ceiling effect. Certain laboratory outcome measures suggested balance difficulties. All participants’ HRQOL scores were within normative values. In survivors, an association was found between BOT-2 scores and the physical dimension of HRQOL. Survivors of PFBT demonstrate persistent balance difficulties, best assessed by the BOT-2; however, they report normal HRQOL. Future research should be collaborative and focus upon the best ways to manage balance deficits.

Mechanical Circulatory Support (MCS) improves the health-related quality of life (HRQOL) for patients with end-stage heart failure (HF) (Friedrich & Bohm, 2007). Religious and spiritual practices positively influence health and well-being for cardiac patients (Ai, Park, Huang, Rodgers, & Tice, 2007; Blackhall, & Koenig, 1998). The purpose of this study was to examine the impact of spiritual well-being (SWB) and religious well-being (RWB) and coping styles and methods (CSM) on health related quality of life (HRQOL) of patients with MCS. This exploratory repeated measures study used Spearmans’ rho and Wilcoxons’ Signed Rank tests for correlation and comparison analyses. The study population included patients with left ventricular assist devices (HMII) and total artificial hearts (TAH). Patients were assessed pre and post MCS implant. Patients reported an increase in the use of faith practices for coping (prayer and meditation), providing evidence for spiritual growth after MCS. SWB, RWB, and CSM, and their corresponding subscales were positively related to HRQOL revealing medium to large correlation coefficients and variances. Post MCS, the TAH patients’ mean scores decreased for SWB and RWB (religious comfort) and increased for RWB (religious strain), indicating some spiritual distress. The internal locus of control for TAH patients increased with significance. HMII patients reported a significant increase in adaptive coping and “God” locus of control. The results suggest that early spiritual assessment with MCS patients may promote more timely and effective responses to maladaptive and dysfunctional coping. Patients who use their faith to cope (in distress or not) may also benefit from an increase in emotional and spiritual attention. Spiritual care providers who are knowledgeable about the MCS assessment, surgery, and recovery process could then provide interventions that build resilience and mediate improved outcomes through supportive and directed counseling. The results of this study inform the future development of interdisciplinary plans of spiritual and emotional care for this patient population and for other chronic illness populations. Further examination may reveal how SWB, RWB and CSM improve HRQOL as well as highlight the unique support needs of HMII and TAH patients.

Quand elle est possible, la greffe de rein est le meilleur traitement de l’insuffisance rénale chronique terminale. La qualité de vie des patients joue un rôle essentiel dans la réussite de la transplantation. Dans ce contexte, notre objectif était d’analyser la qualité de vie dans une cohorte de patients transplantés rénaux en France. Dans un premier temps, nous avons analysé la qualité de vie des patients au moment de leur inclusion dans l’étude dans le but de déterminer les facteurs associés à la qualité de vie. Nous avons retrouvé des caractéristiques socio-démographiques et cliniques connues dans la littérature et de nouvelles variables psycho-sociales ont été identifiées. Ce travail nous a ensuite amené à analyser le profil des patients qui utilisent l’Internet et les réseaux sociaux : près de 80% de patients utilisent Internet et la plupart d’entre eux ont besoin de soutien informatif. Nous avons pu montrer, dans un deuxième temps, une faible concordance de l’évolution de l’état de santé du patient du point de vue du patient et du médecin. Enfin, pour interpréter les scores de qualité de vie dans cette cohorte, nous avons calculé la différence minimale cliniquement significative par la méthode des courbes ROC, en utilisant le changement d’état de santé du point de vue du patient comme critère de changement (anchor). Cette analyse a montré que l’évolution de la qualité de vie de ces patients n’est pas liée au changement d’état de santé des patients. Cette thèse fournit une analyse approfondie sur la qualité de vie des patients transplantés rénaux francophones. / Kidney transplant is the best treatment for chronic end-stage renal failure. The quality of life of the patient plays a vital role in the success of the transplantation. In this context, our objective was to analyze the quality of life in a cohort of kidney transplanted patients in France. As a first step, we analyzed the quality of life of patients at the time of their inclusion in the study in order to determine the factors associated with the quality of life. Socio-demographic and clinical characteristics known in literature were found and new psycho-social variables were identified. This work then led us to analyze the profile of patients using the Internet and social networks: nearly 80% of the patients use Internet and the majority need an informative support. We were able to show, in a second time, a weak concordance of the evolution of the state of health of the patient from the patient and the doctor point of view. Finally, to interpret the quality of life scores in this cohort, we calculated the minimal clinically significant difference, by the ROC curve method and using the change in health status from the patient's point of view as a criteria for change. This analysis showed that the quality of life of these patients is not related to the patient's state of health, and no clinical changes could be detected for the quality of life scores of the two questionnaires. This thesis provides an in-depth analysis of the quality of life of French kidney transplanted patients.