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The network: a strategy to describe the relationship between quality of life and disease activity. The case of inflammatory bowel disease
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.
1999 (English)In: European Journal of Gastroenterology and Hepathology, ISSN 0954-691X, E-ISSN 1473-5687, Vol. 11, no 10, 1099-1104 p.Article in journal (Refereed) Published
Abstract [en]

OBJECTIVE:

Health is a complex and multi-dimensional entity and is neither easily determined nor easily conveyed to others. Publications have often combined various variables of disease activity and health-related quality of life (HRQoL), used the variables interchangeably or utilized summation indices to compare health assessment. The aim of this study is to investigate the relationship between measurements of disease activity and HRQoL.

STUDY:

design Cross-sectional evaluation of disease activity and HRQoL.

STUDY POPULATION:

Two hundred and eleven consecutive patients with ulcerative colitis.

SETTING:

The catchment area of Linköping University Hospital.

MEASUREMENTS:

HRQoL was measured using two questionnaires, the Sickness Impact Profile (SIP) and the Rating Form of IBD Patient Concerns (RFIPC). Patients were also asked if they were 'feeling fit and well', as a measurement of general health perception. Disease activity was measured by means of symptom cards, laboratory tests and sigmoidoscopy.

RESULTS:

The correlations (Spearman's r (r5)) between variables of disease activity and HRQoL were low. 'Feeling fit and well' was best correlated to worries and concerns (the RFIPC, rs 0.32, P < 0.05), while there was a decreasing association with subjective functional status (the SIP, rs 0.31, P < 0.05), symptoms (stools per day, rs 0.15, not significant) and biological variables (endoscopy score, rs 0.04, not significant).

CONCLUSION:

The correlations between traditional measurements of disease activity and various measures of HRQoL are low. We therefore propose a system whereby the process is conceptualized using a 'network strategy', ordering the measurements of disease activity and HRQoL into five dimensions: biological variables, symptoms, functional status, worries and concerns, and health perceptions. We feel that this method of interpretation more accurately reflects the overall health of a group of patients with IBD than more traditional summation indices.

Place, publisher, year, edition, pages
1999. Vol. 11, no 10, 1099-1104 p.
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:liu:diva-25760PubMedID: 10524638Local ID: 10194OAI: oai:DiVA.org:liu-25760DiVA: diva2:246308
Available from: 2009-10-08 Created: 2009-10-08 Last updated: 2017-12-13Bibliographically 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, HenrikAlmer, SvenStröm, Magnus

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