| 1. |
- Rosén, Anna, 1975-
(författare)
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Mass screening for celiac disease in 12-year-olds : Finding them and then what?
- 2012
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background Mass screening for celiac disease (CD) as a public health intervention is controversial. Before implementation, a suitable screening strategy should be outlined, and the acceptability of the screening scrutinized. Also, the benefits of early detection and possible negative consequences should be explored and compared. The overall aim of this thesis was to evaluate different strategies for finding 12-year-olds with undiagnosed CD in the general population, and to explore the experiences of those receiving the diagnosis in a mass screening.Methods A school-based CD screening of 12-year-olds was conducted in five study sites across Sweden. Out of 10041 children who were invited, 7208 had a blood sample analyzed for CD-marker tissue transglutaminase of isotype IgA (tTG-IgA) and 7161 for total serum IgA (s-IgA). If the s-IgA value was low, tTG-IgG was also measured. Additional analysis of endomysial antibodies (EMA) was performed if borderline values of tTG were found. In total, 192 had elevated CD-markers, 184 underwent a small intestinal biopsy and 153 eventually had CD diagnosed. Before receiving knowledge about their CD status, children and their parents filled in questionnaires regarding symptoms and CD-associated conditions. Questionnaires were returned by 7054 children (98%) and 6294 parents (88%). Later, all adolescents who had been diagnosed with CD more than one year ago (n=145), and their parents, were invited to a mixed-method follow-up study in which they shared their experiences in questionnaires, written narratives and focus group discussions. In total, we have information on 117 (81%) of these adolescents, either from the adolescents themselves (n=101) and/or from their parent/s (n=125). Data were analyzed using a combination of descriptive and analytical quantitative and qualitative methodologies.Results We found that information on symptoms and CD-associated conditions were poor predictors for finding undiagnosed CD in the study population. Questionnaire-based case-finding by asking for CD-associated symptoms and conditions would have identified 52 cases (38% of all cases) at a cost of blood-sampling 2282 children (37% of the study population). The tTG-IgA test had an excellent diagnostic accuracy with the area under the receiver operating characteristic curve of 0.988. If using the recommended cut-off for tTG-IgA (>5 U/mL) 151 had fulfilled biopsy criteria and 134 CD cases had been identified. The strategy of lowering the cut-off to tTG-IgA>4 U/mL, and adding the EMA analysis in those with tTG-IgA between 2-4 U/mL, identified another 17 cases (a 12% increase) at the cost of performing 32 additional biopsies. Measuring total s-IgA in 7161 children discovered only two additional cases at the cost of performing 5 additional biopsies. The positive predictive value of our screening strategy was 80%. Results from the follow-up study of the screening-detected CD cases illustrated that 54% reported health improvement after initiated treatment, but also that these health benefits had to be balanced against social sacrifices. We also found that although the screening-detected diagnosis was met with surprise and anxiety, the adolescents and their parents were grateful for being made aware of the diagnosis. A majority of parents (92%) welcomed a future screening, but both adolescents and parents suggested that it should be conducted earlier in life.Conclusion Obtaining information on symptoms and CD-associated conditions was not a useful step in finding undiagnosed CD cases in a general population. The serological marker tTG-IgA, however, had excellent diagnostic accuracy also when lowering the cut-off. The diagnosis had varying impact on adolescents’ quality of life, and their perceived change in health had to be balanced against the social sacrifices resulting from the diagnosis. Overall, CD mass screening seemed acceptable to most of those who were diagnosed and their parents.
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| 2. |
- Khatami, Alireza, 1970-
(författare)
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It is on my skin, on my soul, and on my life : development of a disease-specific quality of life instrument for adult patients with acute cutaneous leishmaniasis in Iran
- 2018
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background: Cutaneous leishmaniasis (CL), is the most common form of a group of diseases known as leishmaniases. They are caused by obligatory intracellular protozoa from the genus Leishmania and transmitted by sandflies. Over 350 million people are at risk of getting leishmaniasis and 1,000,000 to 1,200,000 individual get CL each year, the majority of them are living in developing countries. CL may affect a patient’s physical and mental health, and social relations impairing his/her quality of life (QoL).Aim: The aim of this thesis was to develop a disease-specific instrument for measuring QoL in adult patients suffering from the acute form of CL in Iran according to a needs-based approach.Methods: This thesis used a mixed-method approach and was based on two quantitative studies and one qualitative study. The first study was a systematic review on the randomized controlled clinical trials (RCTs) conducted on acute CL in the Old World. The second one was a qualitative content analysis study conducted through interviews with patients with CL in Iran. The third study was a psychometric evaluation of an instrument that was developed according to the results of the second study. For making a QoL instrument with fundamental measurement properties, the Rasch method was used.Results: The findings of the first paper demonstrated that the majority of the 50 reviewed RCTs were of poor quality of conduct and report. An important finding was that none of those studies included a patient-reported outcome in their primary, secondary, or even tertiary outcome assessments. To obtain the patients’ lived experience and perspectives on their disease, 12 individual in-depth interviews were conducted with patients with CL. Four themes were developed: "Fearing an agonizing disease" reflects patients' experiences of disease development resulting in sadness and depression, "struggling to cope" and "taking on the blame" both illustrate how patients experience living with the disease, which included both felt and enacted stigma as major social concerns. "Longing for being seen and heard" refers to patients' experiences with healthcare as well as their expectations and demands from communities and healthcare system to be involved in closing the knowledge and awareness gap. The third study was conducted as a survey on 107 patients with acute CL answering 50 questions with four response categories focusing different aspects of QoL, named “P-CL-QoL”, an acronym for Preliminary Cutaneous Leishmaniasis Quality of Life instrument. The Rasch fitness criteria for the original 50- item questionnaire indicated that it was not optimal for fundamental measurement of the QoL in CL patients. Two more Rasch models were developed by merging the last two response categories and making a 3-point Likert scale, and the three last response categories, making a dichotomized “Yes” and “No” response choices to each item. The final 34-item instrument with dichotomous responses showed improved measurement properties including very good targeting and item-separation index, internal consistency (Chronbach’s α=0.94), and a log-likelihood Chi square=2242.50 (degree of freedom=2640, and P=1.000) indicating excellent fitting to a Rasch model. This version was named Cutaneous Leishmaniasis Quality of Life instrument (CL-QoL). According our findings, the mean (±standard deviation) of raw scores and 0-34 scaled measures of the participants were 15.9 (±9.2) and 16.8 (±6.9), respectively. The impact of CL on the QoL of the patients was none to minimal in 17.0 %, mild in 25.0 %, moderate in 31.8 %, high in 12.5 %, and very high in 13.7 % of the participants. QoL impairment was not related to the sex and age of the individuals, geographic location where CL was caught, duration of the disease, and its severity (P>0.05).Conclusion: This thesis demonstrated that there is a lack of patients’ reported outcomes in clinical trials on CL, and that mental and social dimensions of CL are complex and adversely affect patients' lives by causing psychological burden and limiting their social interactions. The health authorities have to plan programs to increase the disease awareness in communities and among healthcare professionals to prevent the existing stigma and improve patients' social condition and medical care. While we could suggest a diseases-specific QoL measurement instrument through our third study, we acknowledge that the developed instrument may not be optimal and has to be validated in other populations, preferably using the Rasch method.
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| 3. |
- Bergström, Ulrica, 1970-
(författare)
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Fragility fractures in fragile people : epidemiology of the age quake
- 2009
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Osteoporosis-related fracture is already today a major public health problem and the number of hip fractures is expected to double to 2030. Sweden has one of the highest hip fracture incidences worldwide. This may be explained by several factors: e.g. age, genetic, climatologic, geographic and a relative vitamin D deficiency, secondary to the limited sunlight exposure especially during winter months. Intrinsic and extrinsic factors contribute to a fracture, although a prior low energy fracture is one of the strongest predictors for a subsequent one and this should be a target for secondary fracture prevention in an orthopaedic setting. Since 1993 all injured patients admitted to the emergency floor and all in-hospital fractures at Umeå University Hospital, Sweden, were registered according to the Injury Data Base, former EHLASS. There were 31,173 fracture events (one or more fractures at the same time), of which 13,931 were in patients’ ≥ 50 years old. The fracture database was co analyzed with the Northern Sweden Health and Disease Study cohort in a nested case-control study for investigations of associations between osteoporotic fracture and serum markers, lifestyle data, nutrition etc. We found that there were differences in fracture pattern depending on age and sex. Both injury mechanism and fracture site were strongly dependent of age. The most severe fragility fracture, hip fracture, had a decreasing incidence. However, the incidence curve was right-shifting leading to an increase, both in numbers and in incidence of hip fractures among the oldest female. To identify people at high risk for fractures, re-fracture patients are useful. No less than 21% of the fracture patients had suffered more than one fracture event, accounting for 38% of all fracture events. The total risk ratio for a subsequent fracture was 2.2 (2.1-2.3 95% CI). In males the highest risk for re fracture was in the age cohort 70-79 years (RR 2.7, 2.3-3.2 95% CI), in females > 90 years (RR 3.9, 3.2-4.8 95% CI). Another possible risk factor in this subarctic population is the lack of sunlight, leading to a vitamin D deficit. The overall adjusted risk of sustaining a hip fracture in this population was 2.7 (95%CI:1.3-5.4) in subjects with a serum 25 hydroxyvitamin D below 50 nmol/l. The association was, however, different according to age at baseline. Thus in subjects aged 60 years and above at baseline, the adjusted odds ratio of sustaining a hip fracture was 6.2 (1.2-32.5 95%CI) for the group of individuals with a serum 25OHD below 50 nmol/l, whereas no significant association was found in the youngest age group. In the next 30 years the ongoing demographic changes will accelerate. The World War II baby boomers will cause an age quake. We can already see signs heralding a new fracture pattern: an increasing cohort of mobile but fragile elderly, with considerable co-morbidity is now at risk for fragility fractures. In fracture patients, clinical information is sufficient to pinpoint patients with a high risk for re-fractures. It is therefore clinically important to use the information provided by the fracture event. We suggest that trauma units and primary care units should screen for risk factors and inform patients about the treatment options, and to organize fracture liaison services. This seems to be especially cost-efficient for our oldest and frailest patients. Secondary prophylaxis and follow-up treatment after cardiovascular disorders are now a matter of course worldwide, but the screening for risk factors, in order to prevent a second fracture, is often neglected. This is one of the most important issues of fracture care in the future in order to improve general health.
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| 4. |
- Myléus, Anna, 1978-
(författare)
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Towards explaining the Swedish epidemic of celiac disease : an epidemiological approach
- 2012
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background: Celiac disease occurs worldwide in approximately 1% of the population, whereof the majority of cases are undiagnosed. Sweden experienced an epidemic (1984-1996) of clinically detected celiac disease in children below 2 years of age, partly attributed to changes in infant feeding. Whether the epidemic constituted a change in disease occurrence and/or a shift in the proportion of diagnosed cases remains unknown. Moreover, the cause of the epidemic is not fully understood.Objective: To increase the knowledge regarding the occurrence of celiac disease in Sweden, with focus on the epidemic period and thereafter, as well as the etiology of celiac disease in general, by investigating the Swedish epidemic and its potential causes.Methods: We performed a two-phased cross-sectional multicenter screening study investigating the total prevalence, including both clinically- and screening-detected cases, of celiac disease in 2 birth cohorts of 12-year-olds (n=13 279): 1 of the epidemic period (1993) and 1 of the post-epidemic period (1997). The screening strategy entailed serological markers analyses, with subsequent small intestinal biopsy when values were positive. Diagnosis was ascertained in clinical cases detected prior to screening. Infant feeding practices in the cohorts were ascertained via questionnaires. An ecological approach combined with an incident case-referent study (475 cases, 950 referents) performed during the epidemic were used for investigating environmental- and lifestyle factors other than infant feeding. Exposure information was obtained via register data, a questionnaire, and child health clinic records. All studies utilized the National Swedish Childhood Celiac Disease Register.Results: The total prevalences of celiac disease were 2.9% and 2.2% for the 1993 and 1997 cohorts, respectively, with 2/3 cases unrecognized prior to screening. Children born in 1997 had a significantly lower celiac disease prevalence compared to those born in 1993 (prevalence ratio, 0.75; 95% confidence interval [CI], 0.60-0.93). The cohorts differed in infant feeding; more specifically in the proportion of infants introduced to dietary gluten in small amounts during ongoing breastfeeding. Of the environmental and lifestyle factors investigated, no additional changes over time coincided with the epidemic. Early vaccinations within the Swedish program were not risk factors for celiac disease. Early infections (≥3 parental-reported episodes) were associated with increased risk for celiac disease (adjusted odds ratio [OR] 1.5; 95% CI, 1.1-2.0), a risk that increased synergistically if, in addition to having ≥3 infectious episodes, the child was introduced to gluten in large amounts, compared to small or medium amounts, after breastfeeding was discontinued (OR 5.6; 95% CI, 3.1-10). Early infections probably made a minor contribution to the Swedish epidemic through the synergistic effect with gluten, which changed concurrently. In total, approximately 48% of the epidemic could be explained by infant feeding and early infections.Conclusion: Celiac disease is both unexpectedly prevalent and mainly undiagnosed in Swedish children. Although the cause of the epidemic is still not fully understood, the significant difference in prevalence between the 2 cohorts indicates that the epidemic constituted a change in disease occurrence, and importantly, corroborates that celiac disease can be avoided in some children, at least up to 12 years of age. Our findings suggest that infant feeding and early infections, but not early vaccinations, have a causal role in the celiac disease etiology and that the infant feeding practice – gradually introducing gluten-containing foods from 4 months of age, preferably during ongoing breastfeeding – is favorable.
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| 5. |
- Ng, Nawi, 1974-
(författare)
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Chronic disease risk factors in a transitional country : the case of rural Indonesia
- 2006
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background: The epidemic of chronic diseases is largely neglected. Although a threatening burden of chronic diseases is emerging, developing public health efforts for their prevention and control is not yet a priority for trans-national and national health policy makers. Understanding the population burden of risk factors which predict chronic diseases is an important step in reducing the impact of the diseases themselves. Objective: This thesis responds to the increasing burden of chronic diseases worldwide, and aims to illustrate the gap in chronic disease risk factor research in developing countries. The thesis describes and analyses the distribution of chronic disease risk factors in a rural setting in Indonesia. It also describes how smoking, one of the most common risk factors, is viewed by rural Javanese boys. Ultimately, therefore, this thesis aims to contribute to policy and programme recommendations for community interventions in a rural setting in Indonesia Methods: The studies were conducted in Purworejo District, where a Demographic Surveillance System (DSS) has been running since 1994. The Purworejo DSS is part of the INDEPTH network (International Network of field sites for continuous Demographic Evaluation of Populations and Their Health in developing countries). Two representative cross-sectional studies (in 2001 and 2005) were conducted to assess the chronic disease risk factors (including smoking, elevated blood pressure, and overweight and obesity). The first cross-sectional study was followed up in 2002 and 2004. In each study, a total of 3 250 participants (approximately 250 individuals in each sex and age group among 15–74 year olds stratified into 10-year intervals) were randomly selected from the surveillance database from each enumeration area in the surveillance area. Instruments were adopted from the WHO STEPS survey and adapted to local setting. Since many Indonesians start to smoke at an earlier age, a qualitative study using a focus group discussion approach was conducted among school boys aged 13-17 years old to describe and explore beliefs, norms, and values about smoking in a rural setting in Java. Result: Both the rural and urban populations in Purworejo face an unequal distribution of risk factors for chronic diseases. The burden among the most well-off group in the rural area has already reached a level similar to that found in the urban area. Most of the risk factors increased in all age, sex and socioeconomic groups during the period of 2001 to 2005. However, women and the poorest group experienced the greatest increase in risk factor prevalence. The qualitative study showed that cultural resistance against women smoking in Indonesia remains strong. Smoking is being viewed as a culturally internalised habit that signifies transition into maturity and adulthood for boys. Smoking is utilised as a means for socialisation and signifies better socioeconomic status. The use of tobacco in the construction of masculinity underlines the importance of gender specific interventions. National tobacco control policy should emphasise a smoking free society as the norm, especially among boys and men, and regulations regarding the banning of smoking should be enforced at all levels and areas of the community. Within the demographic surveillance setting, it is possible to assess the population and health dynamics. Utilisation of a standardised methodology across sites in INDEPTH will produce comparable population-based data in developing countries. Such comparisons are important in global health. A comparison of smoking transition patterns between a Vietnamese DSS and an Indonesian DSS shows that Indonesian men started smoking regularly earlier and ceased less than Vietnamese men. Compared with Vietnam, which has already signed and ratified the Framework Convention on Tobacco Control, tobacco control activities in Indonesia are still deficient. Conclusion: The thesis concludes that the rural population is not spared from the emerging burden of chronic disease risk factors. The patterning of risks across different socioeconomic groups provides a macro picture of the vicious cycle between poverty and chronic diseases. Understanding of risk factors in a local context through a qualitative study provides insight into cultural aspects relating to risk factor adoption, and will allow the fostering and tailoring of culturally appropriate interventions. Combining data from demographic surveillance sites with the WHO STEP approach to chronic disease risk factor Surveillance addresses basic epidemiological questions on chronic diseases. The use of such data is a powerful advocacy tool in public health decision-making for chronic disease prevention in developing countries. With substantial existing evidence on the effectiveness of chronic disease prevention and intervention programmes, it is vital that Indonesia to starts planning intervention programmes to control the impending chronic disease epidemic, and most importantly, to translate all this evidence into public health action. Keywords: chronic disease, risk factor, demographic surveillance system, smoking, elevated blood pressure, overweight and obesity, population-based intervention
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| 6. |
- Sorensen, Julie, 1968-
(författare)
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Social marketing for injury prevention : changing risk perceptions and safety-related behaviors among New York farmers
- 2009
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- In the U.S., work-related death is an all too familiar occurrence on farms. Tractor overturns continue to be the most frequent cause of these fatalities. Efforts to alter farming’s ranking as one of the most deadly occupations in the country must provide proven strategies for the elimination of these preventable deaths. In the past, efforts to decrease the rate of overturn fatalities and injuries have largely focused onincreasing the proportion of tractors with a rollover protective structure (ROPS). These devices, in combination with seatbelts, are 99% effective in protecting the tractor operator from death or injury. Unfortunately, only 59% of U.S. tractors are currently equipped with ROPS. Due to the relative lack of political willpower to legislate ROPS installation and the less than encouraging response to education and awareness programs to date, it appeared necessary to explore alternative intervention strategies. The over-arching purpose of this thesis project has been to assess the utility of social marketing as a framework for developing effective health and safety interventions in the farm community. However, our specific objectives included; a more thorough understanding of the perceived barriers and motivators that influence farmer’s safety decisions, the design and evaluation of social marketing incentives developed to encourage safe behaviors and the evaluation of a social marketing campaign designed to positively impact farmer’s intentions and readiness to retrofit unsafe tractors. The research was by and large conducted in New York State and supported by grants from the National Institutes of Occupational Safety and Health (NIOSH). Previous research conducted in the New York farm community had indicated that small crop and livestock farmers would be an ideal intervention target for a social marketing tractor overturn intervention as their farms accounted for close to 85% of New York farms which lack or have only one ROPS protected tractor. A qualitative assessment of perceived barriers and motivators regarding retrofitting behaviors was performed with representatives of the small crop and livestock community. Grounded theory analysis of these in-depth interviews revealed several key categories which include: 1) risk becomes “normal”, 2) risk becomes part of a “farming identity”, and 3) risk becomes “cost-effective”. This information was used to design potential intervention incentives, such as toll-free assistance finding and purchasing ROPS, financial rebates, and campaign messages designed to address farmer’s stated concerns. Subsequent research included testing and revising messages and evaluating the effect of the different campaign incentives in a prospective quasirandomized controlled trial conducted in different regions of New York and Pennsylvania. The results indicate that social marketing offers a promising framework for the development of injury or fatality prevention programs in farm communities. Farmers in the social marketing region demonstrated the most significant changes in both behavioral intention and readiness to retrofit compared to farmers from other regions. Data also indicated that social norms strongly influence farmer’s decisions to work safely, as demonstrated by the strong correlations between behavioral intention measures and measures of social norms. As well as providing an assessment of the utility of social marketing as an intervention framework, the thesis provides a cogent example of how behavioral theories can be used in the design and evaluation of intervention programs. Both stages of change theory and the theory of planned behavior proved to be valuable for measuring dispositional and behavioral changes and for finetuning future interventions.
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