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Living with coeliac disease beyond the diagnosis
Linköping University, Department of Social and Welfare Studies, Health, Activity, Care. Linköping University, Faculty of Health Sciences.
2011 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Introduction: Studies show that women living in Sweden treated for coeliac disease have lower subjective health than other women. After showing signs of remission, adults who have coeliac disease and follow a gluten-free diet, are expected to handle the treatment without any further planned follow-up by health care.

Aim: The overall aim of this thesis was to study aspects of living with coeliac disease in adults in the years beyond the diagnosis.

Methods: Quantitative methods were used in Studies I, II and III. A qualitative content analysis was performed in Study IV.

Results: The results show that women with coeliac disease have a lower level of well-being than men with coeliac disease. The women who have coeliac disease reported a high rate of gastrointestinal symptoms, although they followed a gluten-free diet, and they visited health care services more frequently than women who did not have coeliac disease. A low rate of gastrointestinal symptoms, a positive self-image and few comorbidity emerged as factors that positively affected well-being. Worries also seemed to be a companion of women diagnosed with coeliac disease in adulthood, typically evident when socializing with others.

Conclusion: This thesis may provide evidence questioning the validity of declaring all women with coeliac disease showing a normalized intestinal mucosa to be in remission, and thus leaving them to self-management.

Clinical implications: Health care professionals need to be aware of that the transition to a gluten-free life may vary for individuals. It does not seem enough to follow a gluten-free diet to reach a state of good well-being for all women. A major task for health care providers is therefore to support women with CD in reaching better subjective treatment outcomes. The results may also contribute to that health care system develops routines in order to optimise the care and treatment of these patients.

Place, publisher, year, edition, pages
Linköping: Linköping University Electronic Press , 2011. , 85 p.
Series
Linköping University Medical Dissertations, ISSN 0345-0082 ; 1278
Keyword [en]
Chronic illness, Coeliac disease, Comorbidity, Gastrointestinal complaints, Health care use, Self-image, Well-being
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:liu:diva-71898ISBN: 978-91-7393-019-2 (print)OAI: oai:DiVA.org:liu-71898DiVA: diva2:455248
Public defence
2011-12-08, Aulan K1, Kåkenhus, Campus Norrköping, Linköpings universitet, Norrköping, 13:00 (English)
Opponent
Supervisors
Available from: 2011-11-09 Created: 2011-11-09 Last updated: 2011-12-12Bibliographically approved
List of papers
1. Psychological well-being of adult coeliac patients treated for 10 years
Open this publication in new window or tab >>Psychological well-being of adult coeliac patients treated for 10 years
2006 (English)In: Digestive and Liver Disease, ISSN 1590-8658, E-ISSN 1878-3562, Vol. 38, no 3, 177-180 p.Article in journal (Refereed) Published
Abstract [en]

Background

Adults with longstanding coeliac disease generally report reduced quality of life. Uncertainty remains whether this is a sign of depression, thought to be a feature of the disorder.

Aim

To assess the psychological well-being in adults with long-treated coeliac disease.

Patients and methods

Fifty-one coeliac disease adults (59% women) aged 45–64 years diagnosed in 1984–1988 and showing evidence of remission 8–12 years later were examined by the Psychological General Well-being index. One hundred and eighty-two (57% women) adults of same age served as population controls.

Results

The coeliac disease patients showed no more signs of anxiety, depressed mood or distress than the controls as assessed by the Psychological General Well-being index, 103 (95% confidence interval (95% CI) = 99–107) versus 103 (95% CI = 100–106). However, unlike controls, the coeliac disease women showed a significantly lower Psychological General Well-being index than the coeliac disease men, 97 (95% CI = 91–103) versus 111 (95% CI = 106–117) (P < 0.003).

Conclusion

Long-treated adult coeliac disease patients showed no difference in psychological well-being to population controls, suggesting that signs of depressed mood is no feature of well-treated coeliac disease. The observation that coeliac disease women living in Sweden experience poorer outcome of treatment than coeliac disease men is a cause of concern and calls for further studies.

Keyword
Coeliac disease
National Category
Gastroenterology and Hepatology
Identifiers
urn:nbn:se:liu:diva-18345 (URN)10.1016/j.dld.2006.01.004 (DOI)
Available from: 2009-05-19 Created: 2009-05-19 Last updated: 2017-12-13Bibliographically approved
2. Swedish women with coeliac disease in remission use more health care services than other women: a controlled study
Open this publication in new window or tab >>Swedish women with coeliac disease in remission use more health care services than other women: a controlled study
2011 (English)In: Scandinavian Journal of Gastroenterology, ISSN 0036-5521, E-ISSN 1502-7708, Vol. 46, no 1, 13-19 p.Article in journal (Refereed) Published
Abstract [en]

Objective. To examine whether the perceived poor outcome of dietary treatment makes Swedish women with coeliac disease (CD) prone to use more health care services than other women. Material and methods. The health care consumption over 36 consecutive months was examined for 137 Swedish women aged 20-80 years with CD in remission after living on a gluten-free diet for a median of 4 years (range 1-8 years). Comparisons were made with the health care consumption of 411 women in the general population matched for age and residence. Results. The results show that women with CD use health care services annually a median of 5.0 times (range 0-76) that is more than female controls 3.6 (0-311) (p andlt; 0.05) mainly in primary care and for complaints related to mental and behavioral disorders (ICD F), diseases of the digestive system (ICD K) and diseases of the musculoskeletal system and connective tissue (ICD M). Conclusions. Women with CD used health care services in keeping with studies indicating reduced health-related quality of life of people with this condition. The results provide evidence that women with CD in remission suffer from co-morbidities that may signal a need for a multidisciplinary follow-up of subjects with CD in Sweden.

Place, publisher, year, edition, pages
Informa Healthcare, 2011
Keyword
Adults, coeliac disease, gluten-free diet, health care consumption, Sweden
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-65712 (URN)10.3109/00365521.2010.516448 (DOI)000286124300003 ()
Available from: 2011-02-18 Created: 2011-02-18 Last updated: 2017-12-11Bibliographically approved
3. Bowel symptoms, self-image and comorbidity impact on well-being of women with coeliac disease
Open this publication in new window or tab >>Bowel symptoms, self-image and comorbidity impact on well-being of women with coeliac disease
Show others...
2011 (English)In: Journal of Nursing and Healthcare of Chronic Illness, ISSN 1752-9816, E-ISSN 1752-9824, Vol. 3, no 3, 302-309 p.Article in journal (Refereed) Published
Abstract [en]

Aim. To explore if gastrointestinal (GI) symptoms, self-image and comorbidity are related to well-being in women with coeliac disease (CD) and whether a history of CD in childhood impacts on well-being in adulthood.

Background. Women in Sweden living with CD show a reduced level of well-being and report a high rate of GI complaints for unclear reasons. The self-image of these women is unknown.

Design. A cross-sectional survey of 231 Swedish women with CD on long-term treatment (≥5 years) with a gluten-free diet (GFD) was conducted in 2010.

Results.  The study showed that well-being is related to a high rate GI symptoms (OR 16·9, 95% CI 5·6-50·7), a negative self-image (OR 8·9, 95% CI 3·5-22·9) and comorbidity (OR 3·3, 95% CI 1·7-6·4). There was no impact of childhood symptoms on well-being, GI symptoms, self-image or comorbidity in adulthood. Half of the study population showed reduced well-being compared with norms. Practically all women (97%) declared that they were always or usually following a GFD and 62% reported at least one disease besides CD.

Conclusion. The study demonstrated that the well-being of women living with CD is affected by GI complaints, self-image and a high rate of comorbidity whereas a history of signs and symptoms of CD in childhood not seems to impact on the well-being in adulthood.

Relevance to clinical practice. Gastrointestinal symptoms, self-image and comorbidity are factors contributing to a low level of well-being of CD women living on a GFD. Launching a multi-disciplinary team for follow-up would represent a novel approach to support these women and may prove valuable in improving their subjective health.

Place, publisher, year, edition, pages
Oxford: Wiley-Blackwell, 2011
Keyword
adults;comorbidity;gastrointestinal symptoms;nursing;self-image;well-being
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-71428 (URN)10.1111/j.1752-9824.2011.01104.x (DOI)
Available from: 2011-10-17 Created: 2011-10-17 Last updated: 2017-12-08Bibliographically approved
4. The Worried well: Women living with Coeliac disease in Sweden
Open this publication in new window or tab >>The Worried well: Women living with Coeliac disease in Sweden
(English)Manuscript (preprint) (Other academic)
Abstract [en]

Aims and objectives: To explore how women with coeliac disease (CD) experience everyday life and their outlook on their future.

Background: Women who are diagnosed with CD and who are recommended to eat a gluten-free diet for life is likely to undergo a transition. It is therefore important that health professionals have insight into what it is like to live with a chronic illness and the factors that affect the lives of women who have CD.

Design: A qualitative approach with interviews was used. The inclusion criteria were: woman aged 20 years or more, CD diagnosed at least 2 years prior to inclusion, following a gluten-free diet and speaking Swedish fluently.

Method: A conventional content analysis was used for the subjective interpretation of the data content.

Results: Three main themes emerged in the analysis: illness trajectory and treatment, socializing with others and feelings of loneliness and worries. The findings indicate that living with CD affects the person’s entire life from the past, in the present, and into the future, especially when daily routines must be altered.

Conclusions: The women expressed a sense of loneliness and invisibility and are constantly worried about their health, which extended to the management of their diet when socializing with others. The diet is viewed as a friend, an enemy, an obstacle and an opportunity to enjoy a good life.

Relevance to clinical practice: Supporting women diagnosed with CD as adults during successful adaptation to their chronic illness appears to be a major task for health care professionals. Health care needs to address these women’s symptoms, worries and sense of invisibility.

Keyword
coeliac disease, gluten-free diet, self-management, transition, women
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-71897 (URN)
Available from: 2011-11-09 Created: 2011-11-09 Last updated: 2012-02-29Bibliographically approved

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