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Development and validation of a quality of life questionnaire for household-members of patients with inflammatory bowel disease
April 2000
AGAA123
764
766
QUOTE-ffiD: THE PATIENTS' OPINION IS NECESSARY IN QUALITY OF CARE.
DEVELOPMENT AND VALIDATION OF A QUALITY OF LIFE QUESTIONNAIRE FOR HOUSEHOLD-MEMBERS OF PATIENTS WITH INFLAMMATORY BOWEL DISEASE.
Ingrid van der Eijk, Herman J. Sixma, Fernando Tavarela Veloso, Selwyn Odes, Sean Montague, Giovanni Fornaciari, Bjorn Moum, Reinhold W. Stockbrugger, Maurice G. Russel, Univ Hosp Maastricht, Maastricht, Netherlands; Netherlands Institute of Primary Health Care, Utrecht, Netherlands; Hosp S Joao, Porto, Portugal; Soroka Univ Hosp, Beer Sheva, Israel; Meath Hosp, Dublin, Ireland; Hosp S Maria Nuova, Reggio Emilia, Italy; Hosp 0stfold Fredrikstad, Fredrikstad, Norway. As Inflammatory Bowel Disease (IBD) is chronic and has an early onset in life, IBD patients are exposed to health care for many years. Since there is no instrument available to measure quality of health care (QoC) in IBD, the aim of this study was to develop a questionnaire for this purpose. In seven European countries a total of 254 IBD patients responded to our request to mention all aspects of QoC that were important to them. In all countries similar aspects were mentioned, in total 54. To structure these aspects, 30 Dutch IBD patients were invited to the University Hospital in Maastricht to assign the various aspects to the care dimensions known from literature, e.g. information. Cluster analysis of the generated dimensions and factor analysis of ratings of importance, indicated which items per dimension needed to be included in a questionnaire. The final questionnaire consists of 22 questions, 10 generic and 12 disease-specific. This instrument measures QoC from the IBD patients' perspective and is named QUOTE-IBD. The score is the product of the patient's opinion of the importance of care and the doctor's performance. It ranges from 0 to 10 (best). The questionnaire is now available in 8 languages (Norwegian, Danish, Dutch, English, Portuguese, Italian, Greek, and Hebrew). The first testing in 326 IBD patients from four countries showed that III patients had not received specialist care during the last year. Results, based on the remaining 215 IBD patients (123 with ulcerative colitis, 69 females, 54 males, median age 45.5 yrs, age range 22-84 yrs; and 92 Crohns disease, 54 females, 38 males, median age 40.5 yrs, age range 21-83 yrs) indicate that IBD patients need more information concerning prescribed medication, extraintestinal complaints, and appropriate diet. Also, it was observed that females generally rated quality of care lower than males. It can be concluded that, in Europe, the QUOTE-IBD is suitable to measure QoC, and to identify aspects that need to be changed. It is expected that the organization of health care diverges widely among different European countries. Only after mapping of the differences in health care and the patient-related consequences, guidelines can be provided to improve health care for IBD patients.
765 IMPACT FACTOR VERSUS PSYCHOMETRIC METHOD FOR DEVELOPMENT OF A QUALITY OF LIFE QUESTIONNAIRE FOR HOUSEHOLD MEMBERS OF PATIENTS WITH INFLAMMATORY BOWEL DISEASE. Mercedes Vergara, Francese CaseIlas, Xavier. Badia, Juan-R Malagelada, Digest System Research Unit Hosp Gen Vall d'Hebron, Barcelona, Spain; Inst de Salut Public de Catalunya, Barcelona, Spain; Digest DISEASE UNIT Hosp VALL D' HEBRON, Barcelona, Spain. There are two methods to construct quality of life questionnaires: the Impact Factor Method (IFM) selects items that are most frequently perceived as important by subjects whereas the Psychometric Method (PM) selects items by factor analysis based on their interrelationships. We have constructed two questionnaires, one with each method, to measure quality of life of household members of patients with inflammatory bowel disease (IBD) and compared their measurement properties in the same population. An initial pool of 67 items was obtained interviewing a group of household members. By the IFM method we obtained a final questionnaire with 22 items that were distributed in four dimensions: daily life activities (8 items), mental health (6 items), socio-economic concerns (3 items) and emotional burden (5 items). By the PM method we obtained a final questionnaire with 14 items distributed in two dimensions: daily life activities (8 items) and mental health (6 items). Both questionnaires were administered to a group of 88 subjects with a mean age of 40 ::': 16 years. They were 21 mothers, 16 fathers, 33 relationships, to son/daughter and 10 brother/sister of IBD patients. Two additional generic quality of life questionnaires (the Psychological General Well-Being and the EuroQol) were administered to the same individuals for measuring convergent validity. Twenty-five household members of clinically stable patients repeated both questionnaires one month later to determine the reliability test-retest, determinated by Spearman's correlation and intraclass correlation coefficient. Internal consistency was measured by Cronbach C/ coefficient. RESULTS: The correlation between IFM questionnaire and PWB and EuroQol was r=0.60 and r=0.51 respectively (p :s 0.01). The correlation between PM questionnaire and PWB and Euroquol was similar (r=0.60 and r=0.51, p
Mercedes Vergara, Francese Casellas, X. Badia, JUAN-R. Malagelada, Digest System Research Unit Hosp Gen Vall d'Hebron, Barcelona, Spain; Hosp Vall d'Hebron, Barcelona, Spain; Inst de Salut Public de Catalunya, Barcelona, Spain. The effect of inflammatory bowel disease (IBD) on the quality of life (QoL) of household members (HHQoL-IBD) of affected patients has not been evaluated because appropriate measurement instruments are unavailable. Our aim was to develop and validate a specific instrument. Questionnaire development consisted of various sequential phases: item generation, item reduction by using the Impact Factor Method and comprehension of items, that produced the final questionnaire. To assess the convergent validity of the questionnaire, participants also completed two generic questionnaires (the Psychological General Well Being Index -PGWBI- and the EuroQuol). Internal consistency was assessed by the Cronbach 's alpha coefficient. Test-retest reliability was measured in household members of clinically stable patients by intraclass correlation coefficient and Spearman's correlation between responses to the HHQoL-IBD completed twice one month apart. RESULTS: subjects (mean age of 43 ::': 15 years) participated in the development phase of the questionnaire: 7 were interviewed extensively for item pool generation, 82 completed the item reduction questionnaire according to the frequency and importance of each item and 7 were interviewed for the comprehension phase. The final questionnaire consisted of 22 items distributed in four dimensions by factor analysis: daily life activities, mental health, socio-economic concerns and emotional burden. To validate the final questionnaire, it was administered to another group of 88 household members of IBD patients (21 mothers, 16 fathers, 33 relationships, 8 son, and ,10 brothers or sisters)(mean age 40 ::': 15 years). Correlations among scores of HHQoL-IBD, EuroQol and PGWBI were positive and statistically significant (r=0.51 and r=0.60, p
767 THE PREDICTORS OF HOSPITAL CLINIC VISITS IN PATIENTS WITH ULCERATIVE COLITIS: AN EXAMINATION OF DISEASE VARIABLES, QUALITY OF LIFE AND ILLNESS PERCEPTION. Seong-Won Han, Elaine McColl, 1. Nick Steen, John R. Barton, Peter James, Mark R. Welfare, Univ of Newcastle, Newcastle, United Kingdom; Ctr for Health Service Research, Newcastle. Introduction: Little is known about the factors which influence clinic attendance rates in patients with ulcerative colitis. However, experience from other long-term conditions suggests that disease severity is not the only factor that affects the use of health care resources, including hospital visits. Aims: We wished to examine whether the patients perceived quality of life or their cognitive representation of disease affected the number of clinic attendances. We also wished to determine whether these variables were independent of other demographic and disease-related variables. Methods: 87 subjects completed the IBDQ, the SF-36, the illness perception questionnaire (IPQ), a symptom activity index (CAl) an questions on socio-economic status, smoking, medication and co-morbidity. Information on disease extent was extracted from the medical notes. The subjects self-reported the number of clinic visits during the subsequent 12 months. Pearson correlations were calculated between the number of clinic visits and all baseline variables. Multiple regression modelling identified those factors which best predicted the number of clinic visits. Two models were used: model #1 used only the demographic, socio-economic and disease variables as independent factors; model #2 included all baseline variables. Results: In univariate analysis, moderate correlations were found between 4 baseline variables and the number of clinic visits. These were the IBDQ Emotional and Social domains, the SF-36 Role Limitation - Physical domain, and the IPQ Consequences domain. Disease activity and extent, age and gender were no more than weakly correlated with number of relapses (r values all <004). Using regression model #1, the only factor identified that predicted clinic visits was the symptom activity at baseline (R2 = 0.08). Using regression model #2, 2 factors were identified that predicted subsequent clinic attendances: SF-36 Role limitation - physical domain and IPQ Consequences domain (R2 = 0.31). Summary: This study adds to the growing evidence that patient-related variables rather than disease-related variables are the major determinants of the use of healthcare resources. Role limitation due to physical problems and perceived seriousness of consequences of the disease at baseline explained 31% of the variance of the number of clinic visits. Can we devise strategies that address these factors and reduce the use of health care resources?
AGAA123
764
766
QUOTE-ffiD: THE PATIENTS' OPINION IS NECESSARY IN QUALITY OF CARE.
DEVELOPMENT AND VALIDATION OF A QUALITY OF LIFE QUESTIONNAIRE FOR HOUSEHOLD-MEMBERS OF PATIENTS WITH INFLAMMATORY BOWEL DISEASE.
Ingrid van der Eijk, Herman J. Sixma, Fernando Tavarela Veloso, Selwyn Odes, Sean Montague, Giovanni Fornaciari, Bjorn Moum, Reinhold W. Stockbrugger, Maurice G. Russel, Univ Hosp Maastricht, Maastricht, Netherlands; Netherlands Institute of Primary Health Care, Utrecht, Netherlands; Hosp S Joao, Porto, Portugal; Soroka Univ Hosp, Beer Sheva, Israel; Meath Hosp, Dublin, Ireland; Hosp S Maria Nuova, Reggio Emilia, Italy; Hosp 0stfold Fredrikstad, Fredrikstad, Norway. As Inflammatory Bowel Disease (IBD) is chronic and has an early onset in life, IBD patients are exposed to health care for many years. Since there is no instrument available to measure quality of health care (QoC) in IBD, the aim of this study was to develop a questionnaire for this purpose. In seven European countries a total of 254 IBD patients responded to our request to mention all aspects of QoC that were important to them. In all countries similar aspects were mentioned, in total 54. To structure these aspects, 30 Dutch IBD patients were invited to the University Hospital in Maastricht to assign the various aspects to the care dimensions known from literature, e.g. information. Cluster analysis of the generated dimensions and factor analysis of ratings of importance, indicated which items per dimension needed to be included in a questionnaire. The final questionnaire consists of 22 questions, 10 generic and 12 disease-specific. This instrument measures QoC from the IBD patients' perspective and is named QUOTE-IBD. The score is the product of the patient's opinion of the importance of care and the doctor's performance. It ranges from 0 to 10 (best). The questionnaire is now available in 8 languages (Norwegian, Danish, Dutch, English, Portuguese, Italian, Greek, and Hebrew). The first testing in 326 IBD patients from four countries showed that III patients had not received specialist care during the last year. Results, based on the remaining 215 IBD patients (123 with ulcerative colitis, 69 females, 54 males, median age 45.5 yrs, age range 22-84 yrs; and 92 Crohns disease, 54 females, 38 males, median age 40.5 yrs, age range 21-83 yrs) indicate that IBD patients need more information concerning prescribed medication, extraintestinal complaints, and appropriate diet. Also, it was observed that females generally rated quality of care lower than males. It can be concluded that, in Europe, the QUOTE-IBD is suitable to measure QoC, and to identify aspects that need to be changed. It is expected that the organization of health care diverges widely among different European countries. Only after mapping of the differences in health care and the patient-related consequences, guidelines can be provided to improve health care for IBD patients.
765 IMPACT FACTOR VERSUS PSYCHOMETRIC METHOD FOR DEVELOPMENT OF A QUALITY OF LIFE QUESTIONNAIRE FOR HOUSEHOLD MEMBERS OF PATIENTS WITH INFLAMMATORY BOWEL DISEASE. Mercedes Vergara, Francese CaseIlas, Xavier. Badia, Juan-R Malagelada, Digest System Research Unit Hosp Gen Vall d'Hebron, Barcelona, Spain; Inst de Salut Public de Catalunya, Barcelona, Spain; Digest DISEASE UNIT Hosp VALL D' HEBRON, Barcelona, Spain. There are two methods to construct quality of life questionnaires: the Impact Factor Method (IFM) selects items that are most frequently perceived as important by subjects whereas the Psychometric Method (PM) selects items by factor analysis based on their interrelationships. We have constructed two questionnaires, one with each method, to measure quality of life of household members of patients with inflammatory bowel disease (IBD) and compared their measurement properties in the same population. An initial pool of 67 items was obtained interviewing a group of household members. By the IFM method we obtained a final questionnaire with 22 items that were distributed in four dimensions: daily life activities (8 items), mental health (6 items), socio-economic concerns (3 items) and emotional burden (5 items). By the PM method we obtained a final questionnaire with 14 items distributed in two dimensions: daily life activities (8 items) and mental health (6 items). Both questionnaires were administered to a group of 88 subjects with a mean age of 40 ::': 16 years. They were 21 mothers, 16 fathers, 33 relationships, to son/daughter and 10 brother/sister of IBD patients. Two additional generic quality of life questionnaires (the Psychological General Well-Being and the EuroQol) were administered to the same individuals for measuring convergent validity. Twenty-five household members of clinically stable patients repeated both questionnaires one month later to determine the reliability test-retest, determinated by Spearman's correlation and intraclass correlation coefficient. Internal consistency was measured by Cronbach C/ coefficient. RESULTS: The correlation between IFM questionnaire and PWB and EuroQol was r=0.60 and r=0.51 respectively (p :s 0.01). The correlation between PM questionnaire and PWB and Euroquol was similar (r=0.60 and r=0.51, p
Mercedes Vergara, Francese Casellas, X. Badia, JUAN-R. Malagelada, Digest System Research Unit Hosp Gen Vall d'Hebron, Barcelona, Spain; Hosp Vall d'Hebron, Barcelona, Spain; Inst de Salut Public de Catalunya, Barcelona, Spain. The effect of inflammatory bowel disease (IBD) on the quality of life (QoL) of household members (HHQoL-IBD) of affected patients has not been evaluated because appropriate measurement instruments are unavailable. Our aim was to develop and validate a specific instrument. Questionnaire development consisted of various sequential phases: item generation, item reduction by using the Impact Factor Method and comprehension of items, that produced the final questionnaire. To assess the convergent validity of the questionnaire, participants also completed two generic questionnaires (the Psychological General Well Being Index -PGWBI- and the EuroQuol). Internal consistency was assessed by the Cronbach 's alpha coefficient. Test-retest reliability was measured in household members of clinically stable patients by intraclass correlation coefficient and Spearman's correlation between responses to the HHQoL-IBD completed twice one month apart. RESULTS: subjects (mean age of 43 ::': 15 years) participated in the development phase of the questionnaire: 7 were interviewed extensively for item pool generation, 82 completed the item reduction questionnaire according to the frequency and importance of each item and 7 were interviewed for the comprehension phase. The final questionnaire consisted of 22 items distributed in four dimensions by factor analysis: daily life activities, mental health, socio-economic concerns and emotional burden. To validate the final questionnaire, it was administered to another group of 88 household members of IBD patients (21 mothers, 16 fathers, 33 relationships, 8 son, and ,10 brothers or sisters)(mean age 40 ::': 15 years). Correlations among scores of HHQoL-IBD, EuroQol and PGWBI were positive and statistically significant (r=0.51 and r=0.60, p
767 THE PREDICTORS OF HOSPITAL CLINIC VISITS IN PATIENTS WITH ULCERATIVE COLITIS: AN EXAMINATION OF DISEASE VARIABLES, QUALITY OF LIFE AND ILLNESS PERCEPTION. Seong-Won Han, Elaine McColl, 1. Nick Steen, John R. Barton, Peter James, Mark R. Welfare, Univ of Newcastle, Newcastle, United Kingdom; Ctr for Health Service Research, Newcastle. Introduction: Little is known about the factors which influence clinic attendance rates in patients with ulcerative colitis. However, experience from other long-term conditions suggests that disease severity is not the only factor that affects the use of health care resources, including hospital visits. Aims: We wished to examine whether the patients perceived quality of life or their cognitive representation of disease affected the number of clinic attendances. We also wished to determine whether these variables were independent of other demographic and disease-related variables. Methods: 87 subjects completed the IBDQ, the SF-36, the illness perception questionnaire (IPQ), a symptom activity index (CAl) an questions on socio-economic status, smoking, medication and co-morbidity. Information on disease extent was extracted from the medical notes. The subjects self-reported the number of clinic visits during the subsequent 12 months. Pearson correlations were calculated between the number of clinic visits and all baseline variables. Multiple regression modelling identified those factors which best predicted the number of clinic visits. Two models were used: model #1 used only the demographic, socio-economic and disease variables as independent factors; model #2 included all baseline variables. Results: In univariate analysis, moderate correlations were found between 4 baseline variables and the number of clinic visits. These were the IBDQ Emotional and Social domains, the SF-36 Role Limitation - Physical domain, and the IPQ Consequences domain. Disease activity and extent, age and gender were no more than weakly correlated with number of relapses (r values all <004). Using regression model #1, the only factor identified that predicted clinic visits was the symptom activity at baseline (R2 = 0.08). Using regression model #2, 2 factors were identified that predicted subsequent clinic attendances: SF-36 Role limitation - physical domain and IPQ Consequences domain (R2 = 0.31). Summary: This study adds to the growing evidence that patient-related variables rather than disease-related variables are the major determinants of the use of healthcare resources. Role limitation due to physical problems and perceived seriousness of consequences of the disease at baseline explained 31% of the variance of the number of clinic visits. Can we devise strategies that address these factors and reduce the use of health care resources?