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Health-related quality of life in Swedish patients with ulcerative colitis
Linköping University, Department of Molecular and Clinical Medicine, Gastroenterology and Hepatology. Linköping University, Faculty of Health Sciences.
Linköping University, Department of Molecular and Clinical Medicine, Gastroenterology and Hepatology. Linköping University, Faculty of Health Sciences.
Linköping University, Department of Molecular and Clinical Medicine, Gastroenterology and Hepatology. Linköping University, Faculty of Health Sciences.
1998 (English)In: American Journal of Gastroenterology, ISSN 0002-9270, E-ISSN 1572-0241, Vol. 9,, no 00, 2203-2211 p.Article in journal (Refereed) Published
Abstract [en]

Objective:  The aim of this study was to characterize the health-related quality of life (HRQOL) in a Swedish population of patients with ulcerative colitis.

Methods:  A total of 211 patients with ulcerative colitis were studied. Demographic and disease-related factors were noted. HRQOL was measured by one disease specific questionnaire, the Rating Form of IBD Patient Concerns (RFIPC) and one generic, The Sickness Impact Profile (SIP). Additional questions regarding information needs, medication, and well-being were asked. Disease activity was measured by symptom cards, laboratory samples, endoscopy, and two indices of disease activity. The influence of additional concomitant disease was also evaluated.

Results:  Functional impairment as measured by the SIP was primarily in psychological and social areas and to a lesser extent in the physical areas. The highest scores for individual items of the RFIPC were those related to potential complications, e.g., needing an ostomy appliance, needing surgery, developing cancer, losing bowel control, and uncertainty about the disease and effects of medication. Patients with active disease scored higher on both SIP and RFIPC when compared to patients in remission. Presence of coexisting disease weighted heavily on HRQOL.

Conclusion:  Ulcerative colitis has a negative influence on the subjective functional status and seems to cause many worries and concerns. Patients in relapse had greater concerns, more impairment of functional status, and a reduced subjective sense of well-being than patients in clinical remission. Nevertheless, the patients in this Swedish study scored a much better HRQOL than has previously been reported using these questionnaires in patients with ulcerative colitis from the US, France, and Austria.

Place, publisher, year, edition, pages
1998. Vol. 9,, no 00, 2203-2211 p.
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:liu:diva-81918DOI: 10.1111/j.1572-0241.1998.00537.xOAI: oai:DiVA.org:liu-81918DiVA: diva2:556482
Available from: 2012-09-25 Created: 2012-09-25 Last updated: 2017-12-07Bibliographically approved
In thesis
1. A strategy for health assessment: the case of ulcerative colitis
Open this publication in new window or tab >>A strategy for health assessment: the case of ulcerative colitis
2003 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

The importance of a patient's experience of disease impact on daily life and well-being (health-related quality of life (HRQOL)) is broadly acknowledged. Scepticism still remains about how HRQOL should be measured and the usefulness of standardised HRQOL questionnaires in medical research and everyday clinical practice. The lack of definitions, and the unclear relationship between disease activity and HRQOL makes it difficult to interpret results.

The main purpose of this thesis was to determine a strategy for health assessment that is useful in daily practise and meaningful for clinicians and patients. The results are based on measurements of HRQOL and disease activity in a total of 511 patients with ulcerative colitis.

The first aim of this thesis was to identify the major health dimensions and study their relationship in order to determine a strategy for health assessment. Based on theoretical reasoning and the pattern of association between measures of different areas of health status, the health concept was arranged into two categories, disease activity and HRQOL. Disease activity was further divided into biological variables and symptoms, and HRQOL into fimction, disease-related worry, and general well being. There was a poor association between these health dimensions. Measurement of health status is therefore better understood if it is divided into and interpreted as separate dimensions. It is then possible to see which dimensions are impaired and changes that have occurred.

The second aim was to evaluate two disease-specific HRQOL questionnaires, the RFIPC and the IBDQ in Swedish patients with ulcerative colitis. The RFIPC was found to be a valid, reliable and responsive measure of disease-related worry and concern. The IBDQ had external validity and was shown to be a reliable and responsive measure of HRQOL. There are however some concerns regarding the internal validity of the IBDQ. The use of an overall sum score was not supported and the original four IBDQ dimensions showed considerable overlap.

The third aim was to study HRQOL in patients with ulcerative colitis and analyse the influence of disease-related and demographic factors. Patients in remission reported a health-related quality of life similar to that of a Swedish background population. Patients with an ongoing relapse showed a considerable impairment in all health dimensions except physical function compared to patients in remission. Besides the current disease activity, co-existing disease and female gender was found to weigh heavily on the HRQOL. These factors must therefore be taken into account when interpreting and comparing HRQOL results.

The fourth aim was to develop and evaluate a new abbreviated measure of subjective health status. The construction of this new measure was based on a previously developed strategy where the health concept is divided into five main dimensions. Each of the dimensions for symptoms, fimction, disease-related worry and general well-being were covered by one item. This new four-item questionnaire, the Short Health Scale (SHS) was shown to be a valid and sensitive measure of subjective health status in ulcerative colitis.

Place, publisher, year, edition, pages
Linköping: Linköpings universitet, 2003. 72 p.
Series
Linköping University Medical Dissertations, ISSN 0345-0082 ; 767
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-26654 (URN)11219 (Local ID)91-7373-524-8 (ISBN)11219 (Archive number)11219 (OAI)
Public defence
2003-01-17, Berzeliussalen, Hälsouniversitetet, Linköping, 13:00 (Swedish)
Opponent
Available from: 2009-10-08 Created: 2009-10-08 Last updated: 2012-09-25Bibliographically approved

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Hjortswang, HenrikStröm, MagnusAlmer, Sven

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