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Nordyke, Katrina
Publications (10 of 12) Show all publications
Johansson, K., Norström, F., Nordyke, K. & Myléus, A. (2019). Celiac Dietary Adherence Test simplifies Determining Adherence to a Gluten-Free Diet in Swedish Adolescents. Journal of Pediatric Gastroenterology and Nutrition - JPGN
Open this publication in new window or tab >>Celiac Dietary Adherence Test simplifies Determining Adherence to a Gluten-Free Diet in Swedish Adolescents
2019 (English)In: Journal of Pediatric Gastroenterology and Nutrition - JPGN, ISSN 0277-2116, E-ISSN 1536-4801Article in journal (Refereed) Epub ahead of print
Abstract [en]

Objectives: The aims of the study were to ascertain whether the Celiac Dietary Adherence Test (CDAT) could contribute in determining adherence to a gluten-free diet in celiac disease patients and to evaluate the diet adherence and well-being of a study population five years after a celiac disease screening known as “Exploring the Iceberg of Celiacs in Sweden”.

Methods: Through the screening, 90 adolescents (born 1997) were diagnosed with biopsy-proven celiac disease at twelve-years of age. Of them, 70 (78%) came to a five-year follow-up where anti–tissue transglutaminase antibodies 2 (TG2-IgA) was tested and a questionnaire was filled in, including CDAT, which consists of seven questions related to adherence. Non-parametrical tests were utilized to determine associations between adherence measures.

Results: Among the adolescents, 86% were adherent to a gluten-free diet five years after screening, 38% reported their general well-being as excellent, 50% very well, and 12% well. Statistically significant associations were seen between TG2-IgA and the CDAT score (p=0.033), and the self-reported adherence question and the CDAT score (p < 0.001).

Conclusions: The screening-detected adolescents reported a high level of well-being and adherence to a gluten-free diet five years after screening. We conclude that the CDAT can be used in clinical practice as an estimation of adherence to a gluten-free diet. It would be most suitable to use in conjunction with currently used adherence measures, but can also be used as a stand-alone method when others are not accessible.

Place, publisher, year, edition, pages
Wolters Kluwer, 2019
National Category
Public Health, Global Health, Social Medicine and Epidemiology
Identifiers
urn:nbn:se:umu:diva-162417 (URN)10.1097/MPG.0000000000002451 (DOI)
Available from: 2019-08-20 Created: 2019-08-20 Last updated: 2019-08-22
Norström, F., Ivarsson, A., Nordyke, K., Sandström, O., Carlsson, A., Hammarroth, S., . . . Lindholm, L. (2015). The Cost-Effectiveness of a Screening for Celiac Disease. Paper presented at 20th IEA World Congress of Epidemiology (WCE), AUG 17-21, 2014, Anchorage, AK. International Journal of Epidemiology, 44, 250-250
Open this publication in new window or tab >>The Cost-Effectiveness of a Screening for Celiac Disease
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2015 (English)In: International Journal of Epidemiology, ISSN 0300-5771, E-ISSN 1464-3685, Vol. 44, p. 250-250Article in journal, Meeting abstract (Other academic) Published
National Category
Public Health, Global Health, Social Medicine and Epidemiology
Identifiers
urn:nbn:se:umu:diva-122598 (URN)000376659900652 ()
External cooperation:
Conference
20th IEA World Congress of Epidemiology (WCE), AUG 17-21, 2014, Anchorage, AK
Note

Supplement 1, Meeting Abstract 3663

Available from: 2016-09-07 Created: 2016-06-20 Last updated: 2018-06-07Bibliographically approved
Nordyke, K., Rosén, A., Emmelin, M. & Ivarsson, A. (2014). Internalizing the threat of risk: a qualitative study about adolescents' experience living with screening-detected celiac disease 5 years after diagnosis. Health and Quality of Life Outcomes, 12, Article ID 91.
Open this publication in new window or tab >>Internalizing the threat of risk: a qualitative study about adolescents' experience living with screening-detected celiac disease 5 years after diagnosis
2014 (English)In: Health and Quality of Life Outcomes, ISSN 1477-7525, E-ISSN 1477-7525, Vol. 12, article id 91Article in journal (Other academic) Published
Abstract [en]

BACKGROUND: Mass screening could identify those with unrecognized celiac disease (CD), but the experience of being detected through screening and living with screening-detected CD should be explored before considering this as acceptable intervention. For this study we invited screening-detected adolescents to describe their experience living with screening-detected CD five years after diagnosis with the aim to explore how their perceptions, practices, and beliefs evolved.

METHODS: Adolescents who were diagnosed through a population-based CD screening were invited to write narratives after being diagnosed. Of 153 adolescents who were eventually diagnosed through the screening, 91 wrote narratives one year after diagnosis and 72 five years after diagnosis. A qualitative content analysis resulted in a theme and categories that describe the experience living with screening-detected CD five years after diagnosis.

RESULTS: The overall theme - "Internalizing the threat of risk" - illustrates that being detected through screening and the internalized threat of future health complications have impacted how these adolescents felt about the diagnosis, coped with the gluten-free diet (GFD), and thought about CD screening. This theme is supported by four categories: maintaining an imposed disease identity describes how they continued to define their diagnosis in relation to the screening. They also expressed moving from forced food changes to adapted diet routines by describing habits, routines, coping strategies, and the financial burden of the GFD. They had enduring beliefs of being spared negative consequences, however, even after five years, some doubted they had CD and worried that being detected and eating a GFD might not be beneficial, i.e. "continuing to fear it is "all in vain".

CONCLUSIONS: There was maintenance and evolution in the perceptions, practices, and beliefs of the adolescents after five years. Some have adjusted to the disease and adapted new habits and coping strategies to deal with the GFD, while others still doubt they have CD or that being detected was beneficial. The transition to adapting to the disease and GFD is ongoing, illustrating the importance of providing ongoing support for those with screening-detected CD as they adjust to this chronic disease and the GFD.

Place, publisher, year, edition, pages
BioMed Central, 2014
Keywords
Adolescents, Celiac disease, Gluten-free diet, Narratives, Qualitative research, Screening
National Category
Public Health, Global Health, Social Medicine and Epidemiology Health Care Service and Management, Health Policy and Services and Health Economy
Research subject
Public health
Identifiers
urn:nbn:se:umu:diva-81688 (URN)10.1186/1477-7525-12-91 (DOI)000338314500001 ()24915870 (PubMedID)
Note

Originally included in thesis in manuscript form.

Available from: 2013-10-21 Created: 2013-10-21 Last updated: 2018-06-25Bibliographically approved
Forsner, M., Norström, F., Nordyke, K., Ivarsson, A. & Lindh, V. (2014). Relaxation and guided imagery used with 12-year-olds during venipuncture in a school-based screening study. Journal of Child Health Care, 18(3), 241-252
Open this publication in new window or tab >>Relaxation and guided imagery used with 12-year-olds during venipuncture in a school-based screening study
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2014 (English)In: Journal of Child Health Care, ISSN 1367-4935, E-ISSN 1741-2889, Vol. 18, no 3, p. 241-252Article in journal (Refereed) Published
Abstract [en]

Needle-related procedures are reported to be problematic for children. In a school-based celiac disease screening, 12-year-olds' experiences with relaxation and guided imagery (R-GI) during venipuncture were investigated. One group tried nurse-led R-GI (n = 60) and another group received standard care (SC; n = 49). A mixed method design was applied using short written narratives, facial affective scale (FAS), and visual analog scale (VAS) for pain intensity. Qualitative content analysis highlighted that diversity and contradictions when facing blood tests. FAS scores were significantly lower in the SC group before (p = 0.01), during (p = 0.01), and after (p = 0.01) venipuncture. VAS scores did not differ between the groups. The blood test was mostly experienced as unproblematic, and GI during venipuncture did not decrease pain or affect. However, the fact that a number of children scored high FAS indicates a need for effective methods to help children cope with needle-related school-based procedures.

Place, publisher, year, edition, pages
Sage Publications, 2014
Keywords
Intervention, narrative, pain, procedural pain, school health
National Category
Public Health, Global Health, Social Medicine and Epidemiology
Identifiers
urn:nbn:se:umu:diva-78416 (URN)10.1177/1367493513486963 (DOI)000341504500005 ()23818144 (PubMedID)
Available from: 2013-07-19 Created: 2013-07-19 Last updated: 2018-06-08Bibliographically approved
Nordyke, K., Norström, F., Lindholm, L., Stenlund, H., Rosén, A. & Ivarsson, A. (2013). Health-related quality of life in adolescents with screening-detected celiac disease, before and one year after diagnosis and initiation of gluten-free diet, a prospective nested case-referent study. BMC Public Health, 13, Article ID 142.
Open this publication in new window or tab >>Health-related quality of life in adolescents with screening-detected celiac disease, before and one year after diagnosis and initiation of gluten-free diet, a prospective nested case-referent study
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2013 (English)In: BMC Public Health, ISSN 1471-2458, E-ISSN 1471-2458, Vol. 13, article id 142Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: Celiac disease (CD) is a chronic disorder in genetically predisposed individuals in which a small intestinal immune-mediated enteropathy is precipitated by dietary gluten. It can be difficult to diagnose because signs and symptoms may be absent, subtle, or not recognized as CD related and therefore not prompt testing within routine clinical practice. Thus, most people with CD are undiagnosed and a public health intervention, which involves screening the general population, is an option to find those with unrecognized CD. However, how these screening-detected individuals experience the diagnosis and treatment (gluten-free diet) is not fully understood. The aim of this study is to investigate the health-related quality of life (HRQoL) of adolescents with screening-detected CD before and one year after diagnosis and treatment.

METHODS: A prospective nested case-referent study was done involving Swedish adolescents who had participated in a CD screening study when they were in the sixth grade and about 12 years old. Screening-detected adolescents (n = 103) and referents without CD who participated in the same screening (n = 483) answered questionnaires at the time of the screening and approximately one year after the screening-detected adolescents had received their diagnosis that included the EQ-5D instrument used to measure health status and report HRQoL.

RESULTS: The HRQoL for the adolescents with screening-detected CD is similar to the referents, both before and one year after diagnosis and initiation of the gluten-free diet, except in the dimension of pain at follow-up. In the pain dimension at follow-up, fewer cases reported problems than referents (12.6% and 21.9% respectively, Adjusted OR 0.50, 95% CI 0.27-0.94). However, a sex stratified analysis revealed that the significant difference was for boys at follow-up, where fewer screening-detected boys reported problems (4.3%) compared to referent boys (18.8%) (Adjusted OR 0.17, 95% CI 0.04-0.73).

CONCLUSIONS: The findings of this study suggest that adolescents with unrecognized CD experience similar HRQoL as their peers without CD, both before and one year after diagnosis and initiation of gluten-free diet, except for boys in the dimension of pain at follow-up.

Place, publisher, year, edition, pages
BioMed Central, 2013
Keywords
Adolescents, Celiac disease, EQ-5D, Health-related quality of life, Screening, Screening-detected celiac disease
National Category
Public Health, Global Health, Social Medicine and Epidemiology
Identifiers
urn:nbn:se:umu:diva-66872 (URN)10.1186/1471-2458-13-142 (DOI)000315452300001 ()23414483 (PubMedID)
Available from: 2013-03-06 Created: 2013-03-06 Last updated: 2018-06-08Bibliographically approved
Nordyke, K. (2013). Mass screening for celiac disease: a public health intervention from the participant perspective. (Doctoral dissertation). Umeå: Umeå University
Open this publication in new window or tab >>Mass screening for celiac disease: a public health intervention from the participant perspective
2013 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

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.

Place, publisher, year, edition, pages
Umeå: Umeå University, 2013. p. 89
Series
Umeå University medical dissertations, ISSN 0346-6612 ; 1597
Keywords
adolescents, celiac disease, children, EQ-5D, intervention, public health, narrative, screening, screening-detected
National Category
Public Health, Global Health, Social Medicine and Epidemiology
Research subject
Public health
Identifiers
urn:nbn:se:umu:diva-81689 (URN)978-91-7459-726-4 (ISBN)
Public defence
2013-11-15, Aulan, Care of Science Building (Vårdvetarhuset), Norrlands University Hospital (NUS), Umeå, 09:00 (English)
Opponent
Supervisors
Available from: 2013-10-24 Created: 2013-10-21 Last updated: 2018-06-08Bibliographically approved
Rosén, A., Ivarsson, A., Nordyke, K., Karlsson, E., Carlsson, A., Danielsson, L., . . . Emmelin, M. (2011). Balancing health benefits and social sacrifices: a qualitative study of how screening-detected celiac disease impacts adolescents' quality of life. BMC Pediatrics, 11, 32
Open this publication in new window or tab >>Balancing health benefits and social sacrifices: a qualitative study of how screening-detected celiac disease impacts adolescents' quality of life
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2011 (English)In: BMC Pediatrics, ISSN 1471-2431, E-ISSN 1471-2431, Vol. 11, p. 32-Article in journal (Refereed) Published
Abstract [en]

Background

Celiac disease often goes undiagnosed. Mass screening might be an option to reduce the public health burden of untreated celiac disease. However, mass screening is still controversial since it is uncertain whether the benefits of early detection outweigh the possible negative consequences. Before implementation of screening programs, the experiences of those being identified as cases should be considered. The aim of our study was to explore how screening-detected celiac disease impacts adolescents' quality of life, as perceived by themselves and their parents.

Methods

All adolescents (n = 145) with screening-detected celiac disease found in a Swedish screening study, and their parents, were invited to share their experiences in a qualitative follow-up study. In total, we have information on 117 (81%) of the adolescents, either from the adolescents themselves (n = 101) and/or from their parent/s (n = 125). Written narratives were submitted by 91 adolescents and 105 parents. In addition, 14 focus group discussions involving 31 adolescents and 43 parents were conducted. Data was transcribed verbatim and analyzed based on a Grounded Theory framework.

Results

The screening-detected celiac disease diagnosis had varying impact on quality of life that related both to changes in perceived health and to the adolescents' experiences of living with celiac disease in terms of social sacrifices. Changes in perceived health varied from "healthy as anyone else with no positive change" to "something was wrong and then changed to the better", whereas experiences of living with celiac disease ranged from "not a big deal" to "treatment not worth the price". Perceptions about living with celiac disease and related coping strategies were influenced by contextual factors, such as perceived support from significant others and availability of gluten-free products, and were developed without a direct relation to experiencing changes in perceived health.

Conclusions

Screening-detected celiac disease has varying impact on adolescents' quality of life, where their perceived change in health has to be balanced against the social sacrifices the diagnosis may cause. This needs to be taken into account in any future suggestion of celiac disease mass screening and in the management of these patients.

Place, publisher, year, edition, pages
BioMed Central, 2011
National Category
Public Health, Global Health, Social Medicine and Epidemiology
Research subject
Public health
Identifiers
urn:nbn:se:umu:diva-45722 (URN)10.1186/1471-2431-11-32 (DOI)21569235 (PubMedID)
Note

This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Available from: 2012-10-31 Created: 2011-08-15 Last updated: 2018-06-08Bibliographically approved
Norström, F., Lindholm, L., Sandstrom, O., Nordyke, K. & Ivarsson, A. (2011). Delay to celiac disease diagnosis and its implications for health-related quality of life. BMC Gastroenterology, 11(1), 118
Open this publication in new window or tab >>Delay to celiac disease diagnosis and its implications for health-related quality of life
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2011 (English)In: BMC Gastroenterology, ISSN 1471-230X, E-ISSN 1471-230X, Vol. 11, no 1, p. 118-Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: To determine how the delay in diagnosing celiac disease (CD) has developed during recent decades and how this affects the burden of disease in terms of health-related quality of life (HRQoL), and also to consider differences with respect to sex and age.

METHODS: In collaboration with the Swedish Society for Coeliacs, a questionnaire was sent to 1,560 randomly selected members, divided in equal-sized age- and sex strata, and 1,031 (66%) responded. HRQoL was measured with the EQ-5D descriptive system and was then translated to quality-adjusted life year (QALY) scores. A general population survey was used as comparison.

RESULTS: The mean delay to diagnosis from the first symptoms was 9.7 years, and from the first doctor visit it was 5.8 years. The delay has been reduced over time for some age groups, but is still quite long. The mean QALY score during the year prior to initiated treatment was 0.66; it improved after diagnosis and treatment to 0.86, and was then better than that of a general population (0.79).

CONCLUSIONS: The delay from first symptoms to CD diagnosis is unacceptably long for many persons. Untreated CD results in poor HRQoL, which improves to the level of the general population if diagnosed and treated. By shortening the diagnostic delay it is possible to reduce this unnecessary burden of disease. Increased awareness of CD as a common health problem is needed, and active case finding should be intensified. Mass screening for CD might be an option in the future.

Place, publisher, year, edition, pages
London: BioMed Central, 2011
National Category
Gastroenterology and Hepatology
Identifiers
urn:nbn:se:umu:diva-50446 (URN)10.1186/1471-230X-11-118 (DOI)22060243 (PubMedID)
Available from: 2011-12-09 Created: 2011-12-09 Last updated: 2018-06-08Bibliographically approved
Nordyke, K., Norström, F., Lindholm, L., Carlsson, A., Danielsson, L., Emmelin, M., . . . Ivarsson, A. (2011). Health-related quality-of-life in children with coeliac disease, measured prior to receiving their diagnosis through screening. Journal of Medical Screening, 18(4), 187-192
Open this publication in new window or tab >>Health-related quality-of-life in children with coeliac disease, measured prior to receiving their diagnosis through screening
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2011 (English)In: Journal of Medical Screening, ISSN 0969-1413, E-ISSN 1475-5793, Vol. 18, no 4, p. 187-192Article in journal (Refereed) Published
Abstract [en]

OBJECTIVE: To compare the health-related quality-of-life (HRQoL) of children with screening-detected coeliac disease (CD), before they learned of their diagnosis, with that of children without CD and in those previously diagnosed with CD.

METHODS: In a cross-sectional CD screening study ('ETICS': Exploring the Iceberg of Coeliacs in Sweden), of 10,041 Swedish 12-year-olds invited, 7567 (75%) consented to participate, and 7208 (72%) children without previously diagnosed CD had serological markers analysed. Before the screening results were known, 7218 children (72%) and 6524 of their parents (65%) answered questionnaires. Questionnaires included the Swedish child-friendly pilot version of the EQ-5D instrument and proxy version of the EQ-5D instrument, which are generic tools used to describe HRQoL.

RESULTS: We found no significant difference in HRQoL between the groups of children with screening-detected CD, without CD, and those previously diagnosed with CD.

CONCLUSION: The HRQoL reported by 12-year-olds with screening-detected CD, before they learned of their diagnosis, was not worse than that of the children without CD or those previously diagnosed with CD. Thus, mass screening for CD should not be justified on the basis that children with unrecognized CD have a poor HRQoL. However, because these children rated their HRQoL before diagnosis and treatment, they may not have recognized or perceived symptoms as severe enough to seek medical attention which demonstrates how difficult clinical/active case finding can be. Mass screening may still, therefore, be considered if the aim is early detection and prevention of future complications.

Place, publisher, year, edition, pages
Royal Society of Medicine Press, 2011
National Category
Public Health, Global Health, Social Medicine and Epidemiology
Identifiers
urn:nbn:se:umu:diva-54066 (URN)10.1258/jms.2011.011081 (DOI)22106434 (PubMedID)
Available from: 2012-04-13 Created: 2012-04-13 Last updated: 2018-06-08Bibliographically approved
Nordyke, K., Olsson, C., Hernell, O. & Ivarsson, A. (2010). Epidemiological research drives a paradigm shift in complementary feeding: the celiac disease story and lessons learnt. In: Koletzko B, Koletzko S, Rümmele F (Ed.), Koletzko B,Koletzko S,Ruemmele F (Ed.), Drivers of Innovation in Pediatric Nutrition: . Paper presented at 66th Nestlé Nutrition Institute Workshop, Pediatric Program, Sanya, November 2009 (pp. 65-79). S. Karger
Open this publication in new window or tab >>Epidemiological research drives a paradigm shift in complementary feeding: the celiac disease story and lessons learnt
2010 (English)In: Drivers of Innovation in Pediatric Nutrition / [ed] Koletzko B,Koletzko S,Ruemmele F, S. Karger, 2010, p. 65-79Conference paper, Published paper (Other academic)
Abstract [en]

Breast milk is the initial natural food for infants, but already during the second half year complementary feeding is essential. Epidemiological research, first on celiac disease and later on atopic diseases, has driven a paradigm shift with respect to most favorable age to introduce complementary feeding. Simplified, this implies a shift from later to earlier introduction, which is now taken into account in recommendations on infant feeding. Complementary feeding, including all foods, should not be initiated for any infant before 4 months of age, and not later than around 6 months, including infants with elevated disease risk (e.g. for celiac disease or atopic diseases). Motivating reasons could be that ongoing breastfeeding provides an 'immunological umbrella' and/ or a different age interval gives a 'window of opportunity' for developing oral tolerance towards gluten and other food antigens. This will for some infants be in conflict with recent WHO recommendations on exclusive breastfeeding for 6 months. Epidemiology has evolved over time and could, if increasingly used, contribute even more to innovations in pediatric nutrition and other phenomena related to population health.

Place, publisher, year, edition, pages
S. Karger, 2010
Series
Nestlé nutrition institute workshop series: pediatric program, ISSN 1661-6677, 1662-3878 (e-ISSN) ; 66
Keywords
prospective birth cohort, solid food introduction, espghan committee, interventions, infants, prevention, nutrition, children, quality, eczema
National Category
Nutrition and Dietetics Pediatrics
Identifiers
urn:nbn:se:umu:diva-34521 (URN)10.1159/000318949 (DOI)000281663400006 ()978-3-8055-9454-7 (ISBN)978-3-8055-9455-4 (ISBN)
Conference
66th Nestlé Nutrition Institute Workshop, Pediatric Program, Sanya, November 2009
Available from: 2010-06-08 Created: 2010-06-08 Last updated: 2018-06-08Bibliographically approved
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