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A strategy for health assessment: the case of ulcerative colitis
Linköping University, Department of Molecular and Clinical Medicine, Gastroenterology and Hepatology. Linköping University, Faculty of Health Sciences.
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: urn:nbn:se:liu:diva-26654Local ID: 11219ISBN: 91-7373-524-8 (print)OAI: oai:DiVA.org:liu-26654DiVA: diva2:247203
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
List of papers
1. The network: a strategy to describe the relationship between quality of life and disease activity. The case of inflammatory bowel disease
Open this publication in new window or tab >>The network: a strategy to describe the relationship between quality of life and disease activity. The case of inflammatory bowel disease
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.

National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-25760 (URN)10524638 (PubMedID)10194 (Local ID)10194 (Archive number)10194 (OAI)
Available from: 2009-10-08 Created: 2009-10-08 Last updated: 2017-12-13Bibliographically approved
2. Evaluation of the RFIPC, a disease-specific health-related quality of life questionnaire, in Swedish patients with ulcerative colitis
Open this publication in new window or tab >>Evaluation of the RFIPC, a disease-specific health-related quality of life questionnaire, in Swedish patients with ulcerative colitis
1997 (English)In: Scandinavian Journal of Gastroenterology, ISSN 0036-5521, E-ISSN 1502-7708, Vol. 32, no 12, 1235-1240 p.Article in journal (Refereed) Published
Abstract [en]

Background: We wanted to characterize a Swedish version of the Rating Form of Inflammatory Bowel Disease Patient Concerns (RFIPC) with regard to validity, reliability, and responsiveness.

Methods: Two hundred and three consecutive patients with ulcerative colitis were studied. Health-related quality of life (HRQOL) was measured with the disease-specific questionnaire, the RFIPC, and a general questionnaire, the Sickness Impact Profile (SIP). Concerns about general well-being were also reported. Disease activity was measured by means of symptom cards, laboratory tests, and two clinical indices for disease activity.

Results: Test-retest reliability using Spearman's r (rs) was 0.79, and internal consistency measured with Cronbach's alpha was 0.95. RFIPC had a fair correlation with concerns about general well-being (rs = 0.69, P < 0.001). There was also a stronger correlation with another measure of HRQOL, the overall SIP score (rs = 0.43), than with measures of disease activity such as stool frequency (rs = 0.28) and sigmoidoscopic grading (NS). The group of patients in relapse had a higher RFIPC sum score than patients in remission (P = 0.001). Measures of HRQOL had a low correlation with disease activity and did not respond to changes in disease activity.

Conclusion: The Swedish version of the RFIPC is a valid and reliable measure of HRQOL. The SIP and the RFIPC have a good discriminative ability between groups of patients in remission and in relapse. However, they do not seem to be useful in predicting the disease activity or change in disease activity over time in the individual patient.

Keyword
Disease-related concerns, functional status, health-related quality of life, inflammatory bowel disease, ulcerative colitis
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-81916 (URN)10.3109/00365529709028153 (DOI)
Available from: 2012-09-25 Created: 2012-09-25 Last updated: 2017-12-07Bibliographically approved
3. Validation of the inflammatory bowel disease questionnaire in Swedish patients with ulcerative colitis
Open this publication in new window or tab >>Validation of the inflammatory bowel disease questionnaire in Swedish patients with ulcerative colitis
Show others...
2001 (English)In: Scandinavian Journal of Gastroenterology, ISSN 0036-5521, E-ISSN 1502-7708, Vol. 36, no 1, 77-85 p.Article in journal (Refereed) Published
Abstract [en]

Background: The Inflammatory Bowel Disease Questionnaire (IBDQ) is a disease-specific health-related quality of life (HRQOL) questionnaire including four dimensions and a sum score. The aim of this study was to assess the internal and external validity, reliability, and sensitivity of a Swedish version of the IBDQ.

Methods: Three hundred consecutive patients with ulcerative colitis completed the IBDQ and three other health-related quality of life questionnaires (the Rating Form of IBD Patient Concerns (RFIPC), the Short Form-36 (SF-36) and the Psychological General Well-Being (PGWB) index). Disease activity was evaluated using a 1-week symptom diary, blood tests and rigid sigmoidoscopy. One hundred and fourteen patients filled in the questionnaire a second time, of whom 75 had been in stable remission for over 6 months and 39 had a significant clinical change in disease activity.

Results: Factor analysis of the 32 IBDQ items did not support the four dimensional scores. The dimensional scores had sufficient convergent validity, but low discriminative validity and homogeneity. The homogeneity was also low for the sum score. The inter-dimensional correlations were high. The concurrent validity was supported by correlations between the dimensional scores and other measures of disease activity and HRQOL. Patients in relapse scored significantly less on the sum score and the four dimensions compared to patients in remission. The test-retest correlations for the dimensional scores were 0.40-0.76. Patients with a change in disease activity during the 6-month follow-up period had a significant change in IBDQ scores not found in those who remained in remission.

Conclusions: The Swedish version of the IBDQ had external validity and was shown to be a reliable and sensitive measure of HRQOL in ulcerative colitis, though there are some concerns regarding the internal validity. The use of a sum score was not supported and the questionnaire may benefit from a redivision of items into dimensions with better homogeneity and discriminative validity.

Keyword
Health, Health-related quality of life, Inflammatory bowel disease, Quality of life
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-47469 (URN)10.1080/00365520150218093 (DOI)
Available from: 2009-10-11 Created: 2009-10-11 Last updated: 2017-12-13Bibliographically approved
4. Health-related quality of life in Swedish patients with ulcerative colitis
Open this publication in new window or tab >>Health-related quality of life in Swedish patients with ulcerative colitis
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.

National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-81918 (URN)10.1111/j.1572-0241.1998.00537.x (DOI)
Available from: 2012-09-25 Created: 2012-09-25 Last updated: 2017-12-07Bibliographically approved
5. The influence of demographic and disease-related factors on health-related quality of life in patients with ulcerative colitis
Open this publication in new window or tab >>The influence of demographic and disease-related factors on health-related quality of life in patients with ulcerative colitis
Show others...
2003 (English)In: European Journal of Gastroenterology and Hepathology, ISSN 0954-691X, E-ISSN 1473-5687, Vol. 15, no 9, 1011-1020 p.Article in journal (Refereed) Published
Abstract [en]

Objective: The aims of this study were to analyse the health-related quality of life of patients with ulcerative colitis and to assess in what way demographic and disease-related factors influence patients' experiences of this, in order to interpret the results of health-related quality of life assessment more correctly.

Patients and methods: We carried out a cross-sectional evaluation of 300 consecutive patients with ulcerative colitis from the catchment areas of Linköping University Hospital and Örebro University Hospital in Sweden. Health-related quality of life was measured using four questionnaires: the IBDQ, the RFIPC, the SF-36 and the PGWB. Disease activity was evaluated using a one-week symptom diary, blood tests and rigid sigmoidoscopy. Demographic factors (gender, age, civil status, educational level), disease-related factors (disease duration, disease extent, disease activity) and presence of co-morbidity were obtained.

Results: Health-related quality of life was mainly impaired in the psychological and social areas and to a much lesser degree in physical areas. Patients with relapse had significantly more disease-related worries and concerns (the RFIPC), more impaired social functioning (the IBDQ and SF-36), and a lower feeling of well being (the IBDQ, the SF-36 and the PGWB). However, their physical function (SF-36) was no worse than patients in remission. Besides the symptom burden of the current disease, co-morbidity and female gender were associated with a lower health-related quality of life.

Conclusion: To correctly interpret health-related quality of life assessments, it is necessary to consider co-morbidity and gender distribution in addition to the symptom burden of the disease studied.

National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-26358 (URN)10.1097/00042737-200309000-00012 (DOI)10892 (Local ID)10892 (Archive number)10892 (OAI)
Available from: 2009-10-08 Created: 2009-10-08 Last updated: 2017-12-13Bibliographically approved
6. The Short Health Scale: a valid measure of subjective health in ulcerative colitis
Open this publication in new window or tab >>The Short Health Scale: a valid measure of subjective health in ulcerative colitis
Show others...
2006 (English)In: Scandinavian Journal of Gastroenterology, ISSN 0036-5521, E-ISSN 1502-7708, Vol. 41, no 10, 1196-1203 p.Article in journal (Refereed) Published
Abstract [en]

Objective. Assessment of health-related quality of life (HRQOL) is important in both clinical practice and clinical trials, and several multi-item questionnaires are currently in use. We have devised and evaluated a simplified four-item questionnaire, the Short Health Scale (SHS), representing each of four health dimensions: (a) symptom burden, (b) social function, (c) disease-related worry and (d) general well-being.

Material and methods. Three hundred patients with ulcerative colitis completed the SHS and three other HRQOL questionnaires (IBDQ, RFIPC and PGWB). Half of the patients repeated the questionnaires after 6 months – or earlier if disease activity changed. Test–retest reliability was derived from measurements of the SHS questions, 2 weeks apart, on 18 patients in remission.

Results. Patients in relapse scored higher on each of the four SHS questions than patients in remission (p < 0.001). Each of the four SHS scores were associated with results of their corresponding health dimension obtained with the other three questionnaires (rs=0.57–0.78, p < 0.001) (validity). The results of the SHS proved stable on repeated measurement with a 2-week interval in patients in remission (rs=0.71–0.91, p < 0.01) (test–retest reliability). Patients with a change in disease activity had a significant change in their SHS scores (p < 0.05) (responsiveness).

Conclusions. The SHS is a valid, reliable and responsive measure of subjective health in patients with ulcerative colitis. It is simple to administer, quickly completed and the results do not need further calculations. The SHS can be used in clinical trials and in clinical practice to identify the patient's main problems affecting health.

Keyword
Health, Health-related quality of life, IBD, Inflammatory bowel disease, Quality of life, Well-being
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-50112 (URN)10.1080/00365520600610618 (DOI)
Available from: 2009-10-11 Created: 2009-10-11 Last updated: 2017-12-12Bibliographically approved

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