Arthritis Centre Twente

Our mission is to improve the health status of patients suffering from rheumatic conditions. We try to achieve this goal by exploring the health^[1] status of patients with rheumatic disease and by analyzing and improving assessment methods. Where medicine is trying to improve health by treating diseases a good health status is pending not on the absence of disease alone. Our department developed, translated and validated instruments for the assessment of Quality of life^[2].

Healthcare is aiming to keep patients alive in optimal wellbeing by treating the patient’s disease. So goals of healthcare are: firstly survival and secondly qualitative: to keep our patients as healthy as possible: in good wellbeing, by either curing diseases or by controlling diseases by reducing disease activity and preventing physical or psychological damage.

In rheumatology^[3] only some disease can be cured. The majority of rheumatic diseases can neither be cured nor are an immediate threat to life. The disease can be controlled and the patient’s wellbeing should always be kept in mind and be improved whenever possible. However, up to present measuring health and wellbeing is insufficiently developed. Presently measuring Quality of Life is the best effort to reflect health and wellbeing so far.

The concept Quality of Life arose in the 1980’s when treatments to save patients suffering from malignancies became increasingly intensive leading to both increased survival and side effects (decreased wellbeing). Many patients preferred a shorter life in good quality over a longer life hindered by complications and unwell being. Although many instruments especially questionnaires were developed to measure quality of life, they were rarely used in clinical trials and hardly anywhere implemented in clinical practice. The major reason is probably that these instruments are laborious for both patients as healthcare professionals and repeated questionnaires lead to recall bias and bored patients.

Assessment of Quality of Life should be improved. Instruments should pinpoint on the problems of each individual patient; avoid recall bias and be available instantaneously. Pending on the purpose of the assessment the instrument can be either disease specific or generic. In rheumatology many disease specific instruments are developed. We were involved in the development of the AIMS (Arthritis Impact Measurement Scale). On the other hand generic instruments have the advantage to compare (impact) of disease. We performed studies on the psychometric properties of the SF36 (short form 36). In collaboration with the Department of Research Methodology, Measurement and Data Analysis of our University chaired by Prof dr C.A.W. Glas we aim to develop a well calibrated item bank feeding a Computer Adaptive Test^[4] system. To achieve this goal an extensive database on patient reported outcome (PRO^[5]) measures in built using the Dream network^[6]. Using Item Response Theory^[7] based statistics analysis resulting in calibrated questions will result^[8],[9]. In order to support each other we are collaborating with the promiss project (among others Prof.dr J. Fries, Stanford University and NIH, USA) and Qualitymetrics (prof .dr. J Ware, Lincoln, USA).

To collect the clinical and PRO data as mentioned earlier, computer technology is developed within our University. A web based data acquisition system (rheumatoid arthritis ROMA), extremely friendly to patients, using touchscreens is tailor made. This system will be improved and new technological interfaces between computer and patients will bestudied in collaboration with our department for Human Media Interaction (HMI) chaired by prof dr A Nijholt.

With the increasing budget impact of healthcare the field of Health economics is becoming more important. Not the cost per disease cured but the costs per life saved or the costs per regained quality year is relevant to compare costs and decide on differentiation on spending. Therefore the concept quality adjusted life years is developed. Based upon generic Quality of Life questionnaires, time integrated normalized scores results in a QUALY (quality adjusted life year) score where 1 qualy is one patient year in excellent health and 0 qualy is one patient year without any quality. This field is desperately in need of improved instruments to balance health and costs. Quality of Life or Health can only be measured by assessing the patient.

The communication between patients and Healthcare is rapidly changing due to the possibilities of internet and computer technology. From the perspective of medicine and behavior science we study these developments and develop new communication and education tools. The centre for e-healh research is developed for this purpose.

Structure:

Within the University Twente: Rheumatolgy @ University Twente is part of the department for Psychology Communication Heath and Risk (PCGR) of the faculty of behavior science of the University Twente.

Our collaboration with ArtritisCentre Twente (Reumacentrum Twente)

and the teaching hospital Medisch Spectrum Twente are the basement of our research activities.

Staff

Prof.dr. Mart A.F.J. van de Laar, rheumatologist

Dr. Erik Taal, associate professor

Dr. Christina Bode, assistant professor

Dr. Annemarie Braakman, assistant professor

Dr. Stans Drossaert, assistant professor

Dr. Peter ten Klooster, assitant professor

Dr. Harald Vonkeman, rheumatologist

Dr. Ina Kuper, rheumatologist

All publications

2004-2008

All finished PhD projects

Ongoing and planned PhD projects

^[1] In 1948, the World Health Assembly defined Health as “a state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity.” ^[1]^[2] In 1986 the World Health Organization in the Ottawa Charter for Health Promotion said health is “a resource for everyday life, not the objective of living. Health is a positive concept emphasizing social and personal resources, as well as physical capacities.” Classification systems such as the WHO Family of International Classifications (WHO-FIC) (composed of the International Classification of Functioning, Disability, and Health (ICF) and the International Classification of Diseases (ICD)) also define health.

^[2] Quality of life is the degree of well-being felt by an individual or group of people. Unlike standard of living, quality of life is not a tangible thing, and so cannot be measured directly. It consists of two components: physical and psychological. The physical aspect includes things such as health, diet, and protection against pain and disease. The psychological aspect includes stress, worry, pleasure and other positive or negative emotional states.

^[3] Rheumatology is a sub-specialty in internal medicine and pediatrics, devoted to the diagnosis and therapy of rheumatic diseases. Rheumatologists mainly deal with clinical problems involving joints, soft tissues and allied conditions of connective tissues. The term rheumatology originates from the Greek word rheuma, meaning "that which flows as a river or stream" and the suffix -ology, meaning "the study of."

^[4] CAT successively selects questions so as to maximize the precision of the test based on what is known from previous questions.^[1] From the patient's perspective, the questions seems to tailor itself to his or her level of ability. For example, if a patients performs well on an item of intermediate difficulty, he will then be presented with a more difficult question. Or, if he performed poorly, he would be presented with a simpler question. Compared to static multiple choice tests that nearly everyone has experienced, with a fixed set of items administered to patients, computer-adaptive tests require fewer test items to arrive at equally accurate scores.^[1]

^[5] A patient-reported outcome or PRO is an instrument used in a clinical trial or a clinical setting, where the responses are collected directly from the patient. PRO is an umbrella term that covers a whole range of potential types of measurement but is used specifically to refer to questionnaires completed by the patient. PRO data may be collected via self-administered questionnaires completed by the patient or via interviewer-administered questionnaires. The latter will only qualify as a PRO where the interviewer is gaining the patient’s views, not where the interviewer uses patient responses to make a professional assessment or judgment of the impact of the patient’s condition. Thus, PROs are a means of gathering patient rather than clinical or other views on the content covered by the questionnaire.

^[6] The DREAM network is founded in the collaboration between the department for rheumatology of Radboud University Medical Centre in Nijmegen and our department. Eleven departments for rheumatology in the Eastern part of the Netherlands collect clinical as well as patient reported outcome (PRO)data on a three monthly basis. The data are on the one hand used to study and improve daily clinical care in rheumatology but are also used to understand the psychometric properties of PRO’s and to improve the instruments.

^[7] In psychometrics, item response theory (IRT: also known as latent trait theory, strong true score theory, or modern mental test theory) is a body of theory describing the application of mathematical models to data from questionnaires and tests as a basis for measuring abilities, attitudes, or other variables. It is used for statistical analysis and development of assessments, often for high stakes tests such as the Graduate Record Examination. At its most basic level, it is based on the idea that the probability of getting an item correct is a function of a latent trait or ability. For example, a person with higher intelligence would be more likely to correctly respond to a given item on an intelligence test.

^[8]Glas, C. A. W. (1988). The derivation of some tests

for the Rasch model from the multinomial distribution.

Psychometrika, 53, 525-546.

^[9] Glas, C. A. W. (1999). Modification indices for the

2-pl and the nominal response model. Psychometrika,

64, 273-294.

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<< GW Home Actueel Samenwerkingsverbanden Onderwijs Onderzoeksprojecten Proefschriften Zoeken	Arthritis Centre Twente Our mission is to improve the health status of patients suffering from rheumatic conditions. We try to achieve this goal by exploring the health^[1] status of patients with rheumatic disease and by analyzing and improving assessment methods. Where medicine is trying to improve health by treating diseases a good health status is pending not on the absence of disease alone. Our department developed, translated and validated instruments for the assessment of Quality of life^[2]. Healthcare is aiming to keep patients alive in optimal wellbeing by treating the patient’s disease. So goals of healthcare are: firstly survival and secondly qualitative: to keep our patients as healthy as possible: in good wellbeing, by either curing diseases or by controlling diseases by reducing disease activity and preventing physical or psychological damage. In rheumatology^[3] only some disease can be cured. The majority of rheumatic diseases can neither be cured nor are an immediate threat to life. The disease can be controlled and the patient’s wellbeing should always be kept in mind and be improved whenever possible. However, up to present measuring health and wellbeing is insufficiently developed. Presently measuring Quality of Life is the best effort to reflect health and wellbeing so far. The concept Quality of Life arose in the 1980’s when treatments to save patients suffering from malignancies became increasingly intensive leading to both increased survival and side effects (decreased wellbeing). Many patients preferred a shorter life in good quality over a longer life hindered by complications and unwell being. Although many instruments especially questionnaires were developed to measure quality of life, they were rarely used in clinical trials and hardly anywhere implemented in clinical practice. The major reason is probably that these instruments are laborious for both patients as healthcare professionals and repeated questionnaires lead to recall bias and bored patients. Assessment of Quality of Life should be improved. Instruments should pinpoint on the problems of each individual patient; avoid recall bias and be available instantaneously. Pending on the purpose of the assessment the instrument can be either disease specific or generic. In rheumatology many disease specific instruments are developed. We were involved in the development of the AIMS (Arthritis Impact Measurement Scale). On the other hand generic instruments have the advantage to compare (impact) of disease. We performed studies on the psychometric properties of the SF36 (short form 36). In collaboration with the Department of Research Methodology, Measurement and Data Analysis of our University chaired by Prof dr C.A.W. Glas we aim to develop a well calibrated item bank feeding a Computer Adaptive Test^[4] system. To achieve this goal an extensive database on patient reported outcome (PRO^[5]) measures in built using the Dream network^[6]. Using Item Response Theory^[7] based statistics analysis resulting in calibrated questions will result^[8],[9]. In order to support each other we are collaborating with the promiss project (among others Prof.dr J. Fries, Stanford University and NIH, USA) and Qualitymetrics (prof .dr. J Ware, Lincoln, USA). To collect the clinical and PRO data as mentioned earlier, computer technology is developed within our University. A web based data acquisition system (rheumatoid arthritis ROMA), extremely friendly to patients, using touchscreens is tailor made. This system will be improved and new technological interfaces between computer and patients will bestudied in collaboration with our department for Human Media Interaction (HMI) chaired by prof dr A Nijholt. With the increasing budget impact of healthcare the field of Health economics is becoming more important. Not the cost per disease cured but the costs per life saved or the costs per regained quality year is relevant to compare costs and decide on differentiation on spending. Therefore the concept quality adjusted life years is developed. Based upon generic Quality of Life questionnaires, time integrated normalized scores results in a QUALY (quality adjusted life year) score where 1 qualy is one patient year in excellent health and 0 qualy is one patient year without any quality. This field is desperately in need of improved instruments to balance health and costs. Quality of Life or Health can only be measured by assessing the patient. The communication between patients and Healthcare is rapidly changing due to the possibilities of internet and computer technology. From the perspective of medicine and behavior science we study these developments and develop new communication and education tools. The centre for e-healh research is developed for this purpose. Structure: Within the University Twente: Rheumatolgy @ University Twente is part of the department for Psychology Communication Heath and Risk (PCGR) of the faculty of behavior science of the University Twente. Our collaboration with ArtritisCentre Twente (Reumacentrum Twente) and the teaching hospital Medisch Spectrum Twente are the basement of our research activities. Staff Prof.dr. Mart A.F.J. van de Laar, rheumatologist Dr. Erik Taal, associate professor Dr. Christina Bode, assistant professor Dr. Annemarie Braakman, assistant professor Dr. Stans Drossaert, assistant professor Dr. Peter ten Klooster, assitant professor Dr. Harald Vonkeman, rheumatologist Dr. Ina Kuper, rheumatologist All publications 2004-2008 All finished PhD projects Ongoing and planned PhD projects *^[1]* In 1948, the World Health Assembly defined H*ealth* as “a state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity.” ^[1]^[2] In 1986 the World Health Organization in the Ottawa Charter for Health Promotion said health is “a resource for everyday life, not the objective of living. Health is a positive concept emphasizing social and personal resources, as well as physical capacities.” Classification systems such as the WHO Family of International Classifications (WHO-FIC) (composed of the International Classification of Functioning, Disability, and Health (ICF) and the International Classification of Diseases (ICD)) also define health. *^[2]* *Quality of life* is the degree of *well-being* felt by an individual or group of people. Unlike standard of living, quality of life is not a tangible thing, and so cannot be measured directly. It consists of two components: physical and psychological. The physical aspect includes things such as health, diet, and protection against pain and disease. The psychological aspect includes stress, worry, pleasure and other positive or negative emotional states. *^[3]* *Rheumatology* is a sub-specialty in internal medicine and pediatrics, devoted to the diagnosis and therapy of rheumatic diseases. Rheumatologists mainly deal with clinical problems involving joints, soft tissues and allied conditions of connective tissues. The term rheumatology originates from the Greek word rheuma, meaning "that which flows as a river or stream" and the suffix -ology, meaning "the study of." *^[4]* *CAT* successively selects questions so as to maximize the precision of the test based on what is known from previous questions.^[1] From the patient's perspective, the questions seems to tailor itself to his or her level of ability. For example, if a patients performs well on an item of intermediate difficulty, he will then be presented with a more difficult question. Or, if he performed poorly, he would be presented with a simpler question. Compared to static multiple choice tests that nearly everyone has experienced, with a fixed set of items administered to patients, computer-adaptive tests require fewer test items to arrive at equally accurate scores.^[1] *^[5]* A *patient-reported outcome* or PRO is an instrument used in a clinical trial or a clinical setting, where the responses are collected directly from the patient. PRO is an umbrella term that covers a whole range of potential types of measurement but is used specifically to refer to questionnaires completed by the patient. PRO data may be collected via self-administered questionnaires completed by the patient or via interviewer-administered questionnaires. The latter will only qualify as a PRO where the interviewer is gaining the patient’s views, not where the interviewer uses patient responses to make a professional assessment or judgment of the impact of the patient’s condition. Thus, PROs are a means of gathering patient rather than clinical or other views on the content covered by the questionnaire. *^[6]* The *DREAM network* is founded in the collaboration between the department for rheumatology of Radboud University Medical Centre in Nijmegen and our department. Eleven departments for rheumatology in the Eastern part of the Netherlands collect clinical as well as patient reported outcome (PRO)data on a three monthly basis. The data are on the one hand used to study and improve daily clinical care in rheumatology but are also used to understand the psychometric properties of PRO’s and to improve the instruments. *^[7]* In psychometrics, *item response theory* (IRT: also known as latent trait theory, strong true score theory, or modern mental test theory) is a body of theory describing the application of mathematical models to data from questionnaires and tests as a basis for measuring abilities, attitudes, or other variables. It is used for statistical analysis and development of assessments, often for high stakes tests such as the Graduate Record Examination. At its most basic level, it is based on the idea that the probability of getting an item correct is a function of a latent trait or ability. For example, a person with higher intelligence would be more likely to correctly respond to a given item on an intelligence test. *^[8]*Glas, C. A. W. (1988). The derivation of some tests for the Rasch model from the multinomial distribution. Psychometrika, 53, 525-546. *^[9]* Glas, C. A. W. (1999). Modification indices for the 2-pl and the nominal response model. Psychometrika, 64, 273-294.