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Impact of an Active Patient Education Programme on GastrointestinalSymptoms in Women with Celiac Disease Following a Gluten-free Diet: Randomized Controlled Trial
Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences.
Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Department of LAH/Linnéa.ORCID iD: 0000-0002-9606-3238
Linköping University, Department of Medical and Health Sciences, Social Medicine and Public Health Science. Linköping University, Faculty of Health Sciences.
Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Department of Internal Medicine in Norrköping.
2012 (English)In: Gastroenterology Nursing, ISSN 1042-895X, E-ISSN 1538-9766, Vol. 35, no 3, p. 200-206Article in journal (Refereed) Published
Abstract [en]

Despite living with a gluten-free diet Swedish women with celiac disease report a higher rate of gastrointestinal symptoms than women without the disease. This study was designed to assess the impact of active patient education on gastrointestinal symptoms in women with a gluten-free diet. A total of 106 Swedish women, > 20 years, with celiac disease on a gluten free diet for minimum five years took part in a randomized, controlled trial. The intervention group (n=54) underwent a ten-session educational program “Celiac School”, based on problem-based learning. Controls (n=52) were sent information regarding celiac disease at home. Outcome measure was gastrointestinal symptoms at ten weeks and six months after intervention, assessed with the Gastrointestinal Symptom Rating Scale. After ten weeks “Celiac school” (p=0.013) the participating women reported significant improvements that remained six months later (p=0.029). The controls did not improve significantly. A comparison of the development of scores, from baseline to 10 weeks, could not demonstrate a significant difference in the overall index between the two groups but showed a significant improvement concerning one of its components, namely the index reflecting Abdominal Pain (p= 0.007). Intervention methods should be refined in order to reach an even more pronounced effect.

Place, publisher, year, edition, pages
United States: Lippincott Williams & Wilkins, 2012. Vol. 35, no 3, p. 200-206
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:liu:diva-72453DOI: 10.1097/SGA.0b013e318255fe3aISI: 000304758000005OAI: oai:DiVA.org:liu-72453DiVA, id: diva2:459725
Note

On the day of the defence day the status of this article was: Manuscript

Available from: 2011-11-28 Created: 2011-11-28 Last updated: 2019-11-15Bibliographically approved
In thesis
1. Daily life experiences, symptoms and well being in women with coeliac disease: A patient education intervention
Open this publication in new window or tab >>Daily life experiences, symptoms and well being in women with coeliac disease: A patient education intervention
2011 (English)Licentiate thesis, comprehensive summary (Other academic)
Abstract [en]

Background and aims: Despite living with a gluten-free diet (GFD) Swedish women with coeliac disease (CD) report a lower level of well-being than women without the disease and than men with the disease. The aims of this thesis were to describe the life experience of being a woman living with CD (I) and to assess the effects of patient education (PE) with problem based learning (PBL) on psychological well-being (II) and gastrointestinal symptoms (III).

Subjects and methods: In total 106 women, > 20 years, with confirmed CD, who had been treated with a GFD for a minimum of five years were randomized (II&III) to one of two groups: either to the intervention group (n=54) that underwent a ten-session educational program, called ‘Coeliac School’, with PBL, or to a control group (n=52) that received information regarding CD, which was sent to their home on a regular basis.

Assessments: Well-being (II & III) (the Psychological General Well-Being index and the Gastrointestinal Symptom Rating Scale) was assessed at baseline and after 10 weeks in all patients and after 6 months in the intervention group. Individual interviews (I) were carried out with purposefully selected women (n=15) before the start of the‘Coeliac School’.

Result: The qualitative study showed that CD can influence women’s lives in different ways. A desire for a normalised life-world was described. Three conditions necessary to achieve a normalised life-world were described as: being secure, being in control and being seen and included. After ten weeks of education, participants in the “Coeliac school” reported a significant improvement in psychological well-being (p=0.001) and gastrointestinal symptoms (p=0.013). The controls did not improve significantly. However, at baseline the controls, for reasons which were not apparent, and despite randomization, expressed significantly better psychological well-being and fewer gastrointestinal symptoms than women in the intervention group. Six months after completion of the PE program some of its positive effect had decreased.

Conclusions: A PE with PBL can help women with CD to benefit from a greater degree of well-being. It is important to offer PE to those women who fail to achieve a normalised lifeworld. However, intervention methods need to be refined in order to provide a more pronounced long-term effect.

Place, publisher, year, edition, pages
Linköping: Linköping University Electronic Press, 2011. p. 47
Series
Linköping Studies in Health Sciences. Thesis, ISSN 1100-6013 ; 119
Keywords
Chronic disease, illness experience, phenomenology, well‐being, Patient education, PBL
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-72454 (URN)9789173930093 (ISBN)
Presentation
2011-12-06, K52, Kåkenhus, Campus Norrköping, Linköpings universitet, Norrköping, 13:00 (English)
Supervisors
Available from: 2011-11-28 Created: 2011-11-28 Last updated: 2019-10-12Bibliographically approved
2. Perspectives on living with coeliac disease in remission: Daily life experiences, symptoms and well-being
Open this publication in new window or tab >>Perspectives on living with coeliac disease in remission: Daily life experiences, symptoms and well-being
2015 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Background and aims: Despite living with a gluten-free diet (GFD) Swedish women with coeliac disease (CD) report a lower level of well-being than women without the disease and men with the disease. The all-embracing aim of the thesis was to study experiences of living with coeliac disease in remission and to discover whether a patient education intervention can influence the perceived health and daily life of women with coeliac disease.

Methods: Studies I-IV were based on the same sample, a total population of 106 women, > 20 years old, with confirmed CD, who had been treated with a GFD for a minimum of five years. From the total population of 106, 15 and 14 purposefully selected women were included in studies I and IV respectively, which had a phenomenological approach by which data was collected through recorded personal narrative interviews. The participants in studies II & III, comprising the total sample of 106 women, were randomized to one of two groups: either to the intervention group (n=54) that underwent a ten-session patient education (PE) program with problem based learning (PBL), or to a control group (n=52) that received information regarding CD, which was sent to their home on a regular basis. Data was collected by self-administered questionnaires. Study V included 22 purposefully selected people (11 women and 11 men) with confirmed CD that had experienced any kind of residual discomfort despite treatment for at least five years with a GFD. Data was collected by recorded semistructured interviews.

Well-being (II-III) was assessed at baseline and after 10 weeks in all patients and after six months in the intervention group using the Psychological General Well-Being index and the Gastrointestinal Symptom Rating Scale. The interviews (I & IV), which were carried out before the start of the PE (I) and within two weeks of completion of the PE program and about three months after the first interview (IV), were analysed with descriptive phenomenology. The data from study V was analysed by content analysis.

Results: In the results, the experience of living with CD in remission was described by participants as a constant quest for a normal life (I, V). Three constituents representing conditions necessary to achieve a normalised lifeworld were described (I) as: being secure, being in control, and being seen and included. The balance of thoughts in relation to these constituents proved to be crucial for the individual woman’s ability to experience a normal life, despite the disease. Participants described (V) conditions facilitating the opportunities to live a normal life, but also various barriers to reaching this goal.

The results from the PE based on PBL (II-III) showed that the PE improved psychological well-being (II) and GI (III) in women with CD to some extent, but not sufficiently as the improvement reached normative values for women only at 10 weeks regarding PGWB mean total index, and at no point in time regarding GSRS mean total index. The effect had waned at the follow-up six months after the intervention was completed as regards the women’s psychological well-being. In coping with CD, it seems essential for women to interact with others with the same disease (IV). The interaction made women feel individually strengthened, and provided them with a broader perspective on life with CD. As a result, this strengthened their sense of self in relation to the disease. Knowledge given by other participants and experts could result in both relief and anxiety.

The results from the PE based on PBL (II-III) showed that the PE improved psychological well-being (II) and GI (III) in women with CD to some extent, but not sufficiently as the improvement reached normative values for women only at 10 weeks regarding PGWB mean total index, and at no point in time regarding GSRS mean total index. The effect had waned at the follow-up six months after the intervention was completed as regards the women’s psychological well-being. In coping with CD, it seems essential for women to interact with others with the same disease (IV). The interaction made women feel individually strengthened, and provided them with a broader perspective on life with CD. As a result, this strengthened their sense of self in relation to the disease. Knowledge given by other participants and experts could result in both relief and anxiety.

Place, publisher, year, edition, pages
Linköping: Linköping University Electronic Press, 2015. p. 104
Series
Linköping University Medical Dissertations, ISSN 0345-0082 ; 1474
Keywords
Chronic disease, illness experience, patient education, PBL, phenomenology, residual discomfort, well-being.
National Category
Clinical Medicine Gastroenterology and Hepatology Public Health, Global Health, Social Medicine and Epidemiology
Identifiers
urn:nbn:se:liu:diva-122382 (URN)10.3384/diss.diva-122382 (DOI)978-91-7685-975-9 (ISBN)
Public defence
2015-11-27, K3, Kåkenhus, Campus Norrköping, Norrköping, 13:00 (Swedish)
Opponent
Supervisors
Available from: 2015-10-30 Created: 2015-10-30 Last updated: 2019-11-15Bibliographically approved

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Ring Jacobsson, LisaFriedrichsen, MariaGöransson, AnneHallert, Claes

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Division of Health, Activity and CareFaculty of Health SciencesDepartment of LAH/LinnéaSocial Medicine and Public Health ScienceDepartment of Internal Medicine in Norrköping
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