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- Lovén Wickman, Ulrica, 1966-
(författare)
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Self-care: the way to find balance in life : development and evaluation of a self-care questionnaire for patients with inflammatory bowel disease
- 2019
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Introduction: Inflammatory bowel disease (IBD), ulcerative colitis (UC), and Crohn’s disease (CD) occur worldwide and are life-long chronic conditions. The symptoms, which include abdominal pain and frequent diarrhea, cause limitations in life. Thus, patients with IBD need self-care in accordance with their symptoms, their own commitment to maintaining health, and decisions on symptom management. To strengthen self-care, there is a need for a tool that assesses self-care in patients with IBD, which aims to support the patient dialogue about self-care.The overall aim of this thesis was to develop and evaluate a questionnaire for the clinical assessment of self-care, and to explore self-care in relation to disease activity and to health-related quality of life (HRQOL) in patients with IBD.Design and method: The thesis includes four studies, where studies I, II and IV were conducted in Sweden, and study III was conducted in the United States (U.S.). In study I, a descriptive design, interviews were conducted with twenty adult patients, in order to explore self-care in patients with IBD. In study II, the self-care questionnaire was developed and tested with 193 patients with IBD in Sweden. In study III, a crosssectional descriptive design, the self-care questionnaire was translated into English, and the responses of 67 patients in the U.S. were evaluated. Finally, in study IV, a cross-sectional exploratory design was used to explore self-care in relation to patient characteristics, disease activity, and HRQOL among 234 patients. For a total of 421 patients, the data was analyzed using content analysis, and descriptive and analytic statistics (studies I, II, III and IV).Results: Among patients with IBD, self-care relates to symptom recognition, handling of symptoms, planning life, and seeking new options. Self-care varied according to how the patient managed daily life with regard to the symptoms of the disease (study I). Based on the results from study I, the self-care questionnaire was developed in Swedish, resulting in a valid and reliable questionnaire comprising 22 items (study II). The questionnaire was translated to English, and performed self-care activities were associated with a lower degree of well-being in relation to age and gender (study III). The patients were taking medication for IBD, paying attention to their intestinal symptoms, adapting their diet, managing their stress, planning their day and avoiding activities (studies III and IV). Self-care was more frequent in patients with CD when it came to paying attention to psychological symptoms; diet adaption; avoiding various activities including sex; and looking for new approaches to living with IBD. A greater degree of self-care activities was associated with a lower degree of HRQOL (IV).Conclusion: The results indicate the importance of identifying the total symptom experience, and of the patient’s need to discuss self-care, in order to strengthen selfcare and achieve better treatment. The self-care questionnaire can be a useful tool to benefit the discussion of self-care for the patient, and to secure health literacy, medication adherence, and HRQOL. The valid and reliable self-care questionnaire is available for patients with IBD at gastroenterology clinics or out-patient clinics, as primary care. Disease activity affects self-care, and consequently the self-care activities.
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| 2. |
- Nilsson, Evalill, 1966-
(författare)
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Aspects of health-related quality of life : Associations with psychological and biological factors, and use as patient reported outcome in routine health care
- 2012
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background Health-related quality of life (HRQoL) is increasingly recognised as an important patient-reported outcome in health care research. However, the use is still restricted and several questions remain about the value and feasibility of using measures of HRQoL in routine health care. The general aims of the thesis were therefore to increase the understanding of these issues by studying 1) associations of HRQoL with psychological and biological factors, 2) comorbidity adjustments of HRQoL measurement results, and 3) the patient-perceived value and feasibility regarding the use of measures of HRQoL as patient-reported outcome in routine health care.Methods Three different data sets were used; baseline data (questionnaire, anthropometric, and biological) from the ongoing Life conditions, Stress, and Health Study (n=1007, papers I and II), data from a population survey from the County Council of Östergötland in combination with data from two national Swedish registries, the National Inpatient Register and the Causes of Death Register (n=6086, paper III), and data (questionnaire) from the multicentre Swedish Health Promoting Hospitals Network Health outcome assessment project (n=463, paper IV). The HRQoL measures used were the SF-36 and the EQ-5D. Statistical methods include variance, correlation and regression analyses.Results Psychological resources (Self-esteem, Sense of Coherence, and Perceived Control) as well as psychological risk factors (depressive mood) were found to relate independently to HRQoL (SF-36) in the expected directions (positive relations for resources and negative relations for risk factors), but with fewer sex differences than expected (Paper I). Low HRQoL (SF-36) was found to relate to higher levels of inflammatory biological factors (C-reactive protein, Interleukin-6, and MatrixMetalloProteinase-9), and, especially regarding Interleukin-6, many association remained significant, though attenuated, after adjustment for factors of known importance to HRQoL (age, sex, disease, lifestyle and psychological factors) (Paper II). A new comorbidity index, the Health-related Quality of Life Comorbidity Index (HRQL-CI), explicitly developed for use in HRQoL outcomes studies, showed higher explanatory power (higher R2 values) than the commonly used Charlson Comorbidity Index (CCI) regarding impact of comorbidity on HRQoL (SF-36 and EQ-5D). However, regarding mortality the CCI discriminated better between those who died within a year from answering the HRQoL questionnaires, died within ten years, or who were still alive after ten years. This result is in line with the CCI’s original purpose as a mortality predictor. Using morbidity data from mandatory, highly valid national health data bases was found to be useful in a large study of this kind, where using data from medical records might be impractical. (Paper III). Using measures of HRQoL as patient-reported outcome measures in routine health care was regarded as valuable by the majority of the patients in the Health outcome assessment project. A new concept was introduced, respondent satisfaction, and the respondent satisfaction summary score was in most cases equal, i.e. SF-36 and EQ-5D were found to be quite similar regarding the cognitive response process (understanding and responding to the items in the EQ-5D and the SF-36) and patient-perceived content validity (if EQ-5D and SF-36 gave patients the ability to describe their health in a comprehensive way) (Paper IV).Conclusions The four papers investigated different aspects of HRQoL that are important for the implementation of the use of measures of HRQoL within the health care system. In conclusion, 1) the use of measures of HRQoL to identify patients with low HRQoL for further health promoting interventions might be supported on a psychological (psychological resources are related to better HRQoL) and biological basis (low HRQoL being an important sign of increased biological vulnerability), 2) a comorbidity index specifically aimed to adjust for comorbidity in patient HRQoL outcomes studies was found to be valid in a normal population (that might serve as a reference population in future studies), and 3) patients perceived the use of measures of HRQoL to be valuable and feasible in routine health care, and questionnaire length and ease of response were not found to be crucial arguments in the choice between SF-36 and EQ-5D. Hence, in their own way, they all and together, contribute to removing obstacles in the implementation process of using patient-reported outcome measures in the health care system for quality improvement.
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| 3. |
- Oscarsson, Marie, 1956-
(författare)
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Healthy women or risk patients? : Non-attendance in a cervical cancer screening program
- 2007
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Women afflicted with cervical cancer who have the highest morbidity and mortality rates have been the least likely to be screened. The overall aim of this research project was to investigate non-attendance in a cervical cancer screening (CCS) program among women with no registered cervical smear during the previous five years. Both quantitative (I,III) and qualitative methods (II) as well as costeffectiveness analysis (IV) were used in this research project. In Kalmar County women (aged 23-65 years) are invited to CCS every third year. All cervical smears taken both in opportunistic and organised CCS are coordinated in a register called Sympathy. The coverage is 88.4 %. From Sympathy, a random sample of 400 women served as a study group and another 400 women as a control group (III,IV). From the study group, 133 women participated in study I and 14 women in study II. Data was collected by telephone interviews based on a questionnaire (I), qualitative face-to-face interviews (II), questionnaire, promotive efforts and outcome (III), costs and effectiveness (IV). Quantitative data was analysed by descriptive and analytic statistics (I,III), qualitative data was analysed by content analysis. In study IV, cost-effectiveness analysis was used.The women believed that CCS was a good idea for all other women, but tended to refer to various circumstances resulting in their own non-attendance. One of the most common reasons for non-attendance was the feeling of being healthy. The women prioritized family and work commitments, and the invitation to attend CCS was sometimes experienced as a stressful disturbance. The feeling of discomfort was related to the gynaecologic examination, or to health care visits in general (I,II). Of 133 women, 120 could consider having a cervical smear taken and their two most common requirements for doing so were to be assured they would be treated in a friendly way (19%) and to find a suitable time (18%) for having the cervical smear. Fifty women wanted to be helped to have a cervical smear taken. Promotive efforts ranged from making a simple telephone call to arranging an appointment time to a combination of promotive efforts including repeated encounters in order to create a trusting relationship with respect to taking the smear. In the study group, 29.5% (n=118) had a registered cervical smear at follow-up compared to 18.5% (n=74) in the control group, (p<0.001) (III). In the study group, the cost per cervical smear taken was 66.87 €, and in the control group it was 16.62 €. The incremental cost per additional cervical smear taken was 151.36 € (IV). In conclusion, women’s reasons for not attending CCS are complex and are influenced by both present and earlier circumstances. In settings with high coverage, further contact in order to promote women’s attendance at CCS seems to be associated with high costs in relation to the number of additional cervical smears taken.
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| 5. |
- Swahnberg, Katarina
(författare)
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Prevalence of gender violence : studies of four kinds of abuse in five Nordic countries
- 2003
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- BackgroundAbuse against women causes much suffering for the individual and is a major public health problem. The general aims of the present studies were I. to validate the NorVold Abuse Questionnaire (NorAQ) in a randomised population sample, and 2. to estimate the prevalence of emotional, physical and sexual abuse and abuse in the health care system by means of NorAQ in seven Nordic gynaecology and one Swedish population sample.MethodsIn the validation study, data were collected in two steps. (I) NorAQ was sent to a random sample of 1923 women in Östergötland. (2) A subsample of 64 women filled in the NorAQ for a second time and were interviewed. The interview had open questions about abuse and was considered our gold standard. In the prevalence studies, NorAQ was sent to 6729 women visiting seven departments of gynaecology in Denmark (1), Finland (1), Iceland (1), Norway (1) and Sweden (3). The main outcome measures were prevalence rates of emotional, physical, and sexual abuse and abuse in the health care system, current suffering from abuse and cmmmmication of a history of abuse to the gynaecologist.FindingsThe 13 questions in NorAQ concerning experiences of abuse had satisfactory validity and reliability. The response rate was 67-85% at the clinics and 61% in the Swedish population sample. In general the participants did not feel uncomfortable when answering NorAQ. We found differences in lifetime prevalence of the four kinds of abuse as defined by NorAQ among the Nordic cmmtries: emotional abuse 19-37%; physical abuse 38-66%; sexual abuse 17-33%; abuse in the health care system 13-28%. In Sweden, the lifetime prevalence of abuse was in clinical and population samples: emotional abuse 17-21 %; physical abuse 32-38%; sexual abuse 16-17%; abuse in the health care system 14-20%. There were generally no differences in prevalence rates of abuse among the four Swedish samples, except for abuse in the health care system, which was more commonly reported in the clinical sample of Linköping than in the population sample of Östergötland. Not all abused women reported current suffering from the abusive experience. To estimate prevalence of such abuse that causes current suffering is a new approach. Childhood experiences of emotional, physical and/or sexual abuse were associated with adult experiences of abuse in the health care system. Yet two thirds of women who felt abused in the health care system as adult had no history of earlier abuse. Most women had not talked to the gynaecologist about their experiences of abuse at their latest visit to the clinic.ConclusionThe questions about abuse in NorAQ had good validity and reliability. We found high prevalences of all four kinds of abuse. Prevalence estimates are highly sensitive to methodology issues and must be related to a specified definition of abuse. Prevalence of abuse causing current suffering was considerably lower than the mere occurrence rates for all fom kinds of abuse. In general, women had not discussed a background of abuse with the gynaecologist at their latest visit to the clinic. Experiences of emotional, physical and/or sexual abuse in childhood were associated with adult abuse in the health care system. Yet the majority of our cases were not victims of childhood abuse. Both findings call for attention and further exploration.
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| 6. |
- Wanby, Pär
(författare)
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On certain genetic and metabolic risk factors for carotid stenosis and stroke
- 2006
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The present study evaluated genetic and metabolic factors influencing the risk of acute cerebrovascular disease (CVD) and internal carotid artery stenosis (ICA stenosis) in a Swedish community. The threonine (T) containing protein of the FABP2 A54T gene polymorphism has a greater affinity for long chain fatty acids (FFAs) than the alanine (A) containing protein. This altered affinity for FFAs has been shown to affect the intestinal absorption of fatty acids and consequently the fatty acid composition of serum lipids, in particularly postprandially. Endothelium derived NO is a potent vasodilator and antiatherogenic agent. Asymmetric dimethyl arginine (ADMA) is an endogenous competitive inhibitor of endothelial nitric oxide synthase (eNOS). ADMA has been shown to be involved in the pathogenesis of atherosclerotic disease, and ADMA inhibits eNOS by displacement of L-arginine from the enzyme, which in turn is believed to affect the amount of NO available within the endothelium.The FABP2 A54T gene polymorphism was analyzed in 407 patients with acute CVD and also in a subset of these patients whose carotids had been evaluated with ultrasound. Both the FABP2 polymorphism and a common polymorphism of the eNOS gene, Glu298Asp, were analyzed in a different population consisting of 54 matched pairs of patients with ICA stenosis and controls. ADMA levels were measured in both study populations.We found that the T54 allele was more frequent in patients with transient ischaemic attacks (TIA), and that the TT genotype was more prevalent in young, non-smoking patients with CVD than in controls.Increased concentrations of ADMA were observed in cardio-embolic infarction and TIA, but not significantly in non-cardio-embolic infarction nor in haemorrhagic stroke. In multivariate logistic regression models, CVD increased across quartiles of ADMA in all subgroups, but this association was only significant in the TIA group. A decreased arginine/ADMA ratio, a measure of NO availability was associated with CVD in the entire study population. Patients with severe carotid stenosis had significantly higher ADMA levels than the controls. Allele and genotype frequencies of the FABP2 and eNOS polymorphisms did not differ between patients with ICA stenosis and controls.Our results indicate that ADMA is a strong marker for TIA and severe ICA stenosis, and that relative defiency of arginine, measured as L-arginine/ADMA, is present in acute CVD.We also conclude that a common polymorphism of the FABP2 gene increases susceptibility to ischaemic stroke and TIA.
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