| 1. |
- Frumence, Gasto, 1965-
(författare)
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The role of social capital in HIV prevention: experiences from the Kagera region of Tanzania
- 2011
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background The role of social capital for promoting health has been extensively studied in recent years but there are few attempts to investigate the possible influence of social capital on HIV prevention,particularly in developing countries. The overall aims of this thesis are to investigate the links between social capital and HIV infection and to contribute to the theoretical framework of the role of social capital for HIV prevention. Methods Key informant interviews with leaders of organizations, networks, social groups and communities and focus group discussions with members and non-members of the social groups and networks were conducted to map out and characterize various forms of social capital that may influenceHIV prevention. A quantitative community survey was carried out in three case communities toestimate the influence of social capital on HIV risk behaviors. A cross-sectional survey was conducted to estimate the HIV prevalence in the urban district representing a high HIV prevalence zone to determine the association between social capital and HIV infection. Main findings In early 1990’s many of the social groups in Kagera region were formed because of poverty and many AIDS related deaths. This formation of groups enhanced people’s social and economic support to group members during bereavement and celebrations as well as provided loans that empowered members economically. The social groups also put in place strict rules of conduct, which helped to create new norms, values and trust, which influenced sexual health andthereby enhanced HIV prevention. Formal organizations worked together with social groups and facilitated networking and provided avenues for exchange of information including healtheducation on HIV/AIDS. Individuals who had access to high levels of structural and cognitive social capital were more likely to use condoms with their casual sex partners compared to individuals with access to low levels. Women with access to high levels of structural social capital were more likely to use condoms with casual sex partners compared to those with low levels. Individuals with access to low levels of structural social capital were less likely to be tested for HIV compared to those with access to high levels. However, there was no association between access to cognitive social capital and being tested for HIV. Individuals who had access to low levels of both structural and cognitive social capital were more likely to be HIV positive compared to individuals who had access to high levels with a similar pattern among men and women. Conclusion This thesis indicates that social capital in its structural and cognitive forms is protective to HIV infection and has played an important role in the observed decline in HIV trends in the Kagera region. Structural and cognitive social capital has enabled community members to decrease number of sexual partners, delay sexual debut for the young generation, reduce opportunities for casual sex and empower community members to demand or use condoms. It is recommended that policy makers and programme managers consider involving grassroots’ social groups and networks in the design and delivery of interventions strategies to reduce HIV transmission.
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| 2. |
- Hayati, Elli Nur, 1966-
(författare)
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Domestic violence against women in rural Indonesia : searching for multilevel prevention
- 2013
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background: Domestic violence has been recognized globally as one of the most important Public Health concerns with severe negative health consequences for the exposed women. Through UN bodies several international milestones have successfully pushed attention towards worldwide improvements in the life situations of women. Since the ratification of the Convention on Elimination of All Forms of Discrimination against Women (CEDAW) in 1984, significant positive changes towards equality between men and women in Indonesia have been initiated, one being the enactment of the Domestic Violence Act in 2004. However, there is still a need to improve the knowledge about what preventive measures that are feasible and work in different settings. This thesis aims to contribute to a better understanding of appropriate prevention strategies against domestic violence in rural Indonesia by exploring: i) risk factors for domestic violence; ii) women’s ways of coping with exposure to violence; iii) men’s views on masculinity and violence within marriage; and iv) challenges faced by local service agency in managing services for women survivors of domestic violence.Methods: Data from a cross sectional population based study was used to analyze risk factors for physical and sexual abuse among a cohort of pregnant women in Purworejo district. Further, a qualitative phenomenological interview study was conducted to reveal the dynamics of coping among women survivors of domestic violence in the same district. A Grounded Theory study based on focus group discussions with men formed the basis for a situational analysis of the linkage between masculinity and the use of violence within marriage. Finally, a qualitative case study was performed to explore the management practices of a local service agency in the district, to understand the challenges faced in their efforts to address domestic violence.Results: Sexual violence was associated with husbands’ demographic characteristics (age and low educated) and women’s economic independence. Exposure to physical violence among women was strongly associated with husbands’ personal characteristics. The attitudes and norms expressed by women confirmed unequal gender relationships. Experiencing violence led women to using an elastic band coping strategy, moving between actively opposing the violence and surrendering or tolerating the situation. The national gender equality policies were shown to have played a crucial role in transforming gender power relations among men and women (the gender order) in the Indonesian society. Three different positions of masculinity were identified, the traditionalist, the egalitarian, and the progressive, with different beliefs about men’s role within marriage and with various levels of accepting the use of violence. Long term structural preventive efforts and individual interventions targeted to the conflicting couples were preferred over reporting the abuser to the authorities. The major challenges faced by the local service agency were the low priority given by the authorities, mirrored also in low involvement in the daily service by the assigned volunteers. The local agency also stammered in translating the current law and policies into a society that held on to traditional and religious norms regulating the relationships between men and women.Conclusion: Overall, this thesis illustrates that sociocultural traditions and religious teaching still viscously influence people’s attitudes and beliefs about the use of violence within relationships. Domestic violence has not been accepted as a criminal act but is still to a large extent seen as a private family affair. Culturally sensitive programs aimed to bridging the gap between the current laws and policies and the socio-cultural traditions need to be further developed to protect women from domestic violence and increase gender equity in the Indonesian setting.
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| 3. |
- Kasenga, Fyson, 1963-
(författare)
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Making it happen : prevention of mother to child transmission of HIV in rural Malawi
- 2009
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The devastating consequences of HIV/AIDS have caused untold harm and human suffering globally. Over 33 million people worldwide are estimated to be living with HIV and AIDS and a majority of these are in sub-Saharan Africa. Women and children are more infected particularly in sub-Saharan countries. Globally, an estimated number of 370 000 children were newly infected in 2007, mainly through mother to child transmission (MTCT). Implementation of prevention of mother to child transmission (PMTCT) programmes has been introduced in many sub-Saharan countries during the last years. Operational research was conducted to study the demand and adherence of key components within a PMTCT Programme among women in rural Malawi. This study was carried out at Malamulo SDA Hospital in rural Malawi and employed a mixture of both quantitative and qualitative approaches. Data sources included antenatal care (ANC), PMTCT and delivery registers, structured questionnaires, in-depth interviews with HIV positive women in the programme and focus group discussions with community members, health care workers and traditional birth attendants. Over the three year period of the study (January 2005 to December 2007), three interventions were introduced in the antenatal care (ANC) at the hospital at different times. These were HIV testing integrated in the ANC clinic in March 2005, opt-out testing in January 2006 and free maternal services in October 2006. A steady increase of the service uptake as interventions were being introduced was observed over time. HIV testing was generally accepted by the community and women within the programme. However, positive HIV tests among pregnant women were also experienced to cause conflicts and fear within the family. Although hospital deliveries were recognised to be safe and clean, home deliveries were common. Lack of transport, spouse support and negative attitudes among staff were some of the underlying factors. Further study on the quality of care offered in the presence of increased service uptake is required. Community sensitisation on free maternal care and male involvement should be strengthened to enable full utilisation of services. Additionally, service providers at facility and community levels, policy makers at all levels and the communities should see themselves as co-workers in development to reduce preventable maternal and infant mortality including MTCT of HIV.
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| 4. |
- 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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| 5. |
- Kisanga, Felix, 1953-
(författare)
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Child sexual abuse in urban Tanzania : possibilities and barriers for prevention
- 2012
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background: Child sexual abuse is a global public health and human rights concern. Despite beinga crime in most countries, and with well-known physical and mental health consequences, the majority of sexual offences are not reported. Child sexual abuse is a maltreatment form characterized by contact or non-contact acts perpetrated by adults or older children toward younger children who have little power to resist. This thesis aims to understand the social context of child sexualabuse, and the perceived roles of parents, community, and key professionals in handling such incidents in urban Tanzania.Methods: A combination of qualitative and quantitative research designs were applied to four sub-studies performed in Temeke district, Dar es Salaam. Qualititative content analysis was conducted on 23 in-depth interviews to describe the perceptions of key professionals and their experiencesof handling cases of child sexual abuse, in addition, eight in-depth interviews with parents to capture their experiences of legal reporting of child sexual abuse incidents. Grounded theory was used to analyse 13 focus group discussions held with male and female community members to explore norm systems and community awareness related to child sexual abuse. Findings from these exploratory sub-studies paved the way for a school survey among 1359 students from 23 randomly selected secondary schools. Using descriptive statistics and multivariate regression analyses, prevalence, risk factors, and health consequences of child sexual abuse were estimated.Results: Lack of working tools and financial support were perceived as major problems among the key professionals. Corruption at community and institutional levels was seen as jeopardizing justice. Community passivity and lack of knowledge about laws regulating sexual offences were identifiedas additional challenges for conducting fair investigations. The community perspective illustrated that children’s rights were challenged by lack of agency. Community awareness about child sexual abuse was clear but there was also a lack of trust in that the healthcare and legal systems were capable of handling such cases. Myths and cultural beliefs justified abuse. Disclosure of abuse was threatened by fear of stigma and discrimination. Parental interviews identified four types of sexual abuse incidents. The type most strongly associated with a determination to seek justice was one with an innocent child. The youth who was forced into sex elicited feelings of parental betrayal. The consenting, curious youth created uncertainty in how to proceed, while the transactional sex youth evoked feelings of parental powerlessness. Shame and stigma, but also fear of perpetrator retaliation and breach of confidentiality, were seen as challenges for disclosure. The school survey showed that 28% (boys=30%, girls=26%) of the students were exposed to child sexual abuse, with boys more often affected than girls. Twenty-six per cent of boys and 19% of girls reported being forced to look at pornography. Forced sexual intercourse was experienced by 9.8% of boys and 8.7% of girls. Abuse increased with age and diminished self-rated health. Perpetrators were most often neighbours, teachers and peers. In contrast, survivor confidants were most often teachers, family members and friends. Most survivors did not want any action taken for the abuse. Proportions of students who perceived having fair/poor health increased with severity of abuse comparing the none-abused (7.0% and 6.3% of boys and girls respectively) with the ever abused (26% and 41% of boys and girls respectively) and those reporting penetrative sex (35% and 53% of boys and girls respectively). Likewise, suicidal ideation and attempts increased with severity of abuse when compared with those not abused.Conclusions and recommendations: Sexual abuse of children poses a devastating social, and public health challenge. In Tanzania neither the community nor the health or legal institutions are adequately prepared to handle these cases. Educating the community, economically empowering women and strengthening the medico-legal system are needed to increase the opportunity for human,legal and fair investigations and reactions. A national child protection system is needed to address the complexities of abuse at different levels and to safeguard the rights of children in Tanzania.
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| 6. |
- Laisser, Rose Mjawa, 1956-
(författare)
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Prevention of intimate partner violence : community and healthcare workers´ perceptions in urban Tanzania
- 2011
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background: Intimate partner violence (IPV) against women is public health and human rights concern. The studies forming this thesis seek to understand healthcare worker and community attitudes and perceptions about IPV; their role in support, care and prevention of IPV, and the feasibility of introducing routine screening for IPV among women attending healthcare. Methods: Four interrelated studies were conducted in Temeke District, Dar es Salaam, Tanzania: 1) a content analysis of 16 in-depth interviews with healthcare workers about their experiences of meeting IPV clients, 2) a grounded theory analysis of seven focus group discussions that explore community perceptions, 3) a cross sectional study of 657 healthcare workers and students to understand their attitudes and perceptions about IPV and future roles in care and support, and 4) evaluation of a pilot intervention that introduces routine screening in an outpatient department. The pilot intervention included screening of 102 women, ten observations of healthcare worker interactions with women clients, three focus group discussions, and five narratives written by healthcare workers about their experiences with the screening tools. Results: Gender inequalities, attitudes, and poverty intersect in the explanation of IPV. Healthcare workers view low economic status among women, rigid gender norms, and stigma that influences women to stay in violent relationships. Alcohol abuse, multiple sexual partners and low levels of income among men were cited as triggers for IPV episodes. Between 20-67% of healthcare workers and students report meeting IPV clients at work. More than 9o% observed clients with unexplained feelings of sadness and/or loss of confidence. Resource and training limitations, heavy workloads and low salaries constrain services. A strong desire to make a difference in the care and support of IPV clients was present, but violence as a hidden agenda with a client resistance to disclosure was a challenge. The community study shows a transition in gender norms is making violence against women less acceptable. Conclusions and suggestions: Healthcare workers and the community strongly wish and are committed to support IPV prevention. Both groups understood the meaning, provocative factors and some IPV effects. This awareness contributes to their desire to be part of a change. At the central level, prevention of IPV should be on the governments’ policy agenda and should be prioritised. Education about gender-based violence must be incorporated into the curricula of healthcare workers. At community level, advocacy is necessary for changing harmful gender norms and measures to combat women’s poverty. Men should be engaged at all levels. Provision of information on the human rights perspectives of IPV should be strengthened and related to other types of violence.
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| 7. |
- Nordyke, Katrina, 1975-
(författare)
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Mass screening for celiac disease : a public health intervention from the participant perspective
- 2013
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background Celiac disease (CD) is a chronic disorder in genetically predisposed individuals in which damage to the small intestine is caused by eating foods containing gluten. The prevalence has been shown to vary from around 1-3%, but most people with CD are undiagnosed. An option for finding those with unrecognized CD would include screening the general population, i.e., mass screening. However, screening identifies a pre-disease or disease condition in people who are presumed healthy and have not sought help. Therefore, the impacts of the screening process and being diagnosed through screening should be explored before such a public health intervention is considered. A population-based CD screening study involving 12-year-olds was undertaken in Sweden and provided an opportunity to explore these issues related to CD screening.Aims To make inferences about the potential impacts mass screening for CD can have on participants by exploring experiences and outcomes for participants involved in CD screening study.Methods and Subjects Both qualitative (short written narratives) and quantitative (questionnaires with EQ-5D instrument) methods were used. Children who participated in the CD screening study were invited to write narratives at the time of the screening, before screening results were known, describing their experience with the screening (n=240). The EQ-5D instrument was used to measure and compare health-related quality of life reported by participants at the time of the screening and one year after the screening-detected participants received their diagnosis (screening-detected n=103, referents n=483). Those with screening-detected CD were also invited to write narratives one and five years after their diagnosis. In these narratives the adolescents described how it felt to be diagnosed with CD, how it felt to live with CD, and if they thought all children should be screened (one-year follow-up n=91, five-year follow-up n=72). Results Even though some children experienced fear and anxiety during the screening, overall they had, or were provided with, tools that allowed them to cope well with the screening. The health-related quality of life reported by those with screening-detected CD was similar before and one year after diagnosis (and similar to that of the referents). We also found that after five years of living with the diagnosis there had been maintenance and evolution in the beliefs and practices of these adolescents. Being detected through screening and the threat of complications impacted how they felt about the diagnosis, coped with the gluten-free diet, and what they thought about CD screening. Five years after the screening-detected diagnosis the adolescents have adjusted to the disease and adapted new habits and coping strategies to deal with the gluten-free diet. However, there are still those who doubt the accuracy and benefit of the diagnosis. Conclusions Our findings suggest that it is possible for participants to avoid excess anxiety during CD screening. However, there was not consensus among participants that being detected and treated had improved their health-related quality of life or that the immediate benefits outweighed the harm caused by being detected in this way. When considering mass screening, the affect on the participants is important to take into account and our findings shed light on some of the potential impacts a CD mass screening could have on participants.
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| 8. |
- Petersen, Zainonisa, 1976-
(författare)
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Smoking cessation during pregnancy : a person-centred approach among disadvantaged women in South Africa
- 2011
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Smoking remains a leading cause of premature, preventable death in South Africa killing 44 000 South Africans each year. Through the introduction of comprehensive tobacco control policies, the South African government has tried to reduce the death toll and a significant reduction in tobacco use has been recorded since its peak in the 1990’s. Smoking among women, however have remained unchanged, which calls for actions. Pregnant mothers are specifically vulnerable as their smoking detrimentally affects their own health as well as the health of their babies. This thesis gives an account of the role the antenatal care system could play in reducing the burden caused by cigarette smoking. The overall aim was to contribute to an understanding of how a person-centred approach to smoking cessation among disadvantaged pregnant women with high smoking rates may influence smoking behaviour. The specific objectives were to confirm the high smoking rates of the target population, assess their readiness to quit, explore existing barriers and promoting factors towards smoking cessation efforts within the public antenatal health care system, and to qualitatively assess the attitudes and perceptions of disadvantaged pregnant women regarding a personcentred smoking cessation intervention. The high smoking rates of the target population was confirmed based on a cross-sectional study at antenatal clinics in four main cities of South Africa. It focused on the prevalence of smoking during pregnancy and used the stages of change theory to identify their readiness to quit. Additional questions concerned pregnancy related disease experiences, socio-economic determinants of continued smoking as well as attitudes towards the existing clinic services and its possible role in smoking cessation. A qualitative interview study analyzed more in-depth barriers for two-way communication between pregnant mothers and midwives. Both these studies informed the design and development of a person-centred smoking cessation intervention delivered at four public sector antenatal clinics in Cape Town. The intervention was subjected to a comprehensive evaluation based on a combination of quantitative and qualitative measures. This thesis utilizes data from the qualitative process assessment part, comprising individual interviews and focus group discussions with pregnant women during the implementation period of the intervention. The survey results pointed out a high prevalence of smoking of 46% amongst disadvantaged pregnant women, with varying readiness for behaviour change. Most women were in the contemplation stage of behaviour change and thus ready to quit. Many of the women felt positive about the role of the midwife as an antenatal care provider, but they did not have confidence in midwives concerning encouraging or supporting women to change addictive behaviour be it smoking, alcohol or other illegal substances. The qualitative research highlighted the need for revised curricula for health education and counselling. The analysis illustrated how the current situation created tension between clinic staff and pregnant women making women feel unworthy and thus leaving little room for changing behaviour. The in-depth interviews and the focus group discussions provided an analytical account of how the person-centred approach in this population was perceived by the women themselves. It illustrated that a multifaceted intervention programme, using peer counselors and educational material designed specifically for a given target population, can successfully bring about behaviour change. The intervention succeeded in shifting women’s perceptions of hopelessness into feelings of being empowered to face their addictions and competent to make a change. Though the intervention meant greater rapport with the midwives, involving peer counsellors was rated highly by the participating women. The women reported having used the educational material and attached a great value to the appropriateness of the material to their life situations, and the effectiveness of having it combined with counselling from a peer counsellor. This qualitative evaluation showed the importance of a multifaceted intervention approach, in helping women identify with their behaviour change. The thesis highlights the importance of designing smoking cessation interventions that are specific to the needs of target populations. When smoking cessation efforts are included into routine antenatal services it is important that the target group inform the nature and specific components of the intervention.
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| 9. |
- 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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